Little Hearts, Big Miracles

The Marker

2009-04-19T20:06:00.007-05:00

The woman called me late Friday afternoon while I was driving in the car, not far from home, Good Friday before Easter. She was excited to reach me and tell me the news - "It's in! The guys just installed your marker." She was glad to tell me because I had talked to her a few times the past several days, trying to track down the status of Johnny's grave marker with the hope of moving up the priority list. After that last post, I was highly motivated to make some calls and try and get things moving on the placement of his marker. Originally I wanted to have it done by his birthday, but then it took on more meaning to get it done by the Easter weekend. I was really glad to hear the news.

Christmas will forever be associated with Johnny and the news that he would not make it full term. He did of course make it and then some. For some reason I got this idea that I wanted something really meaningful to do on Easter and seeing his marker in place for the first time became the meaningful event I was looking for.

I got off the phone and changed course to head to the cemetery. I had to see it, and immediately started thinking of when I could go there with Lea, but thought I should see it first, in case something wasn't right. What if the name or date is wrong? Hopefully it would be okay.

It was a beautiful afternoon, warm and sunny, no clouds. A beautiful spring day. A drove into the cemetery and headed to where Johnny is. There were a lot of people around, I guess because it was Good Friday. I pulled off and parked the car and could see the stone in place, without making out any of the details because of the angle of the surface flat with the ground and how far away I was. But it was definitely there. I got out and walked over.

I've been to Johnny's grave many times since last August, but seeing his marker in the ground, for the first time, immediately brought back a flood of memories and emotions that I was not ready for. For a moment, it nearly knocked me down. It's difficult to put into words what it means to see your child's grave marker for the first time. We live with the reality of his death every day, but for me I think the permanence and finality of seeing that marker for the first time added another dimension to the whole experience. Another dose of reality that this really is part of our lives.

The marker turned out to be just how we wanted it. We were glad we searched so long for the right design, verse, inscription, and stone.

I stood there in the sunshine, gazing down at the marker for a long time. It was wet, they must have poured some water on and around the marker after disturbing the grass. I watched the stone change from dark to light as the moisture evaporated quickly off the granite in the sun. The retreating water left a film of sandy haze on the polished granite border so I went to the car and got an old towel out of the trunk and returned to the marker to wipe and polish the border to a shiny appearance. I picked some sticks and leaves out of the grass in front of the marker, where Johnny is. If you know where to look, you can still see the faint outline of the edges where they cut the sod for his burial.

Good Friday, and there I was, looking at the grave marker of my son, for the first time. I thought of God, seeing the tomb of Jesus, His Son. Both laid to rest, One long ago, one recently, now both in heaven. Johnny with Jesus. We know Johnny is in a better place, but we miss him... It challenges our faith daily....

We were going to go to a special church service with some friends that night. I went home and told Lea we needed to take advantage of the baby sitter we had arranged for Juliana to go somewhere just the two of us. She later told me that she immediately knew where I wanted to take her and that the marker must have been installed.

Lea and I spent some time there together that evening. It was good. The kind of good that's difficult but good, that we know all too well these days. Tomorrow is his birthday. We will be together. Difficult but good.

Particular Parents

2009-04-07T20:52:00.000-05:00

Sometimes Lea and I don’t agree on certain things…imagine that. For many decisions, there is a lot of back and forth discussion before we arrive at something we can both live with. We’re both particular about many things and we can have strong opinions. It doesn’t make things easy and decisions that should not be so difficult become a long and drawn out processes of compromise. Sometimes we go back and forth long enough on an issue that we talk each other into seeing a different point of view only to realize that we have switched sides are still on opposite ends of the spectrum.

The decisions about Johnny’s grave marker are a good example of this. Arriving at a final decision required significant discussion and multiple designs. I’m sure the person we were working with thought we were strange at times. By the time we finally agreed on a design and stone, and placed the order, it was going to be too late in the year last year to install the marker. Winter was setting in, and the frost was already in the ground. This was kind of a disappointment - that we didn’t get this done before winter, but we just felt like it was important that the marker was something we both could agree upon and feel really good about together and individually. And so it required a lot of time. Multiple designs of the layout, the artwork to include, the layout, and finally the stone. We finally agreed on a stone that comes from a quarry in India. Yes, as in India on the other side of the world, not Indiana.

Now that spring is here, I called the monument company to check on the status. The stone is made and is somewhere in Wisconsin, ready for delivery to the cemetery any day now. It’s just a matter of time now and the need for good weather so things dry out. We will both be glad when the marker is in. It’s always felt like unfinished business to me, so we will be glad to have that done. A permanent marker to honor Johnny’s life.

Right after Johnny was born, I was talking to his cardiologist and she described him as “surprisingly complex”. I always liked that. Johnny’s heart was complex, and so are his parents, and the whole process of choosing a marker for him illustrates the point. But we are who we are and hopefully our particulars and complexities strengthen us more than they create challenges for us.

As we have started to talk about the next few weeks and what they mean to us, we are again keenly aware of our differences. We will need different things, space to move through these comings days how we need to, so they are meaningful, healing, and that whatever the path we take we will come through united in our commitments to each other and our family. People continue to tell us they are praying for us and we are thankful for that. God hears those prayers and continues to sustain us daily. Thank you.

Thinking of Johnny

2009-03-27T21:32:00.000-05:00

I was traveling on business a few weeks ago and was going through some final preparations before presenting to a large group of people at an industry conference. One of my colleagues that was with me asked if I was getting nervous as the room was filling with people. He was going to introduce me before I gave the presentation. I speak publically all the time for my work so presentations to large groups of people are routine. I looked at him and said, “No.” Clearly he was the one that was nervous.

Before speaking publically in front of a group of any size, my mind often drifts to the same place…..to Johnny’s funeral. I spoke that day about Johnny, our brief time together with him, what he meant to us, our grief, and our sadness. I shared about the excitement of his birth, the joy of seeing his big sister love him and play with him, and the emptiness of our loss. I doubt I will ever speak in front of a group of people again that is as significant as that day. That’s what I think about every time now before I speak before a group of people. Compared to that day, whatever I am going to present at the moment seems much less significant.

And so it goes for us. Johnny’s life and death and all the events in between remain a central focal point and backdrop for everything in life. In many ways, all the joy, emotion, and intensity of that period of time is what the experience of today is weighed against. Our four months with him after his birth was both wonderful, especially when we had him home, and incredibly intense and difficult at times, when he was in the hospital and during his surgeries. To this day, despite some of the hard times, I still believe it brought out some of the best in us. After his death, we felt somewhat lost for awhile. What do you do when the person that creates so much intensity and emotion in your life, in addition to the fact that you love them so dearly, is suddenly gone? Even now after the time that has passed I often find myself pausing with the thought that something so significant is missing from our lives. It’s easy to figure out what that feeling is. It’s Johnny.

I finished my presentation that day just fine. Everything went well. My colleague was relieved. I’ve developed some good skills to function well at the task at hand, even with Johnny on my mind. Like most things, my enthusiasm and ability on the outside anyway probably doesn’t appear any different during many everyday tasks. But inside, my thoughts and perspective are often much different then they were just a year ago.

It’s been 7 months since we said goodbye. Next month is Johnny’s birthday. He remains in our thoughts in all that we do, and we wouldn’t want it any other way.

A new year

2009-01-27T20:38:00.001-06:00

All of a sudden, the new year was upon us. Christmas was over and we would soon be in a new year. December 31st was tough. The idea that everything with Johnny would soon be referred to in a time frame of “last year” was hard. It just seemed to put so much distance between us and our life with Johnny, that all the time we had with him was “last year”. Like so often is the case, we didn’t see that coming. The theme is the same, though. Needing to move forward, and live life with each other and with Juliana, but not wanting to place distance between our life with Johnny. It’s inevitable. Here we are, almost through January.

Juliana is doing well. She still talks about Johnny all the time. All the excitement and emotions of seeing so many family members and saying goodbye to them as the holidays concluded really brought back some thoughts of Johnny for Juliana. That “saying goodbye” piece for her triggers something, and reminds her of saying goodbye to Johnny for the last time. We had a lot of questions from her about where Johnny is, and if the same family members she said goodbye to are with Johnny, or if she will ever see them again. Some things still break your heart. Like the time her big stuffed animal dog friend named Lucy was sad, as Juliana told me. She came walking in, holding Lucy tight, comforting her, just like I do for Juliana when something is wrong. I asked why Lucy was sad, and Juliana said in her sweet little quiet voice, “She’s sad because her baby died….something was wrong with his heart.” I scooped them both up on my lap. We talked about it for awhile. I held Lucy and Juliana both together, offering comfort while we talked. When things like that happen, I am taken back to the questions of why this has happened to our family. As I have said, I have seen many beautiful things happen to our family because we knew Johnny and had him with us even for a short time, but I can’t help think sometimes of all the great and wonderful things that would be possible if he was still with us. We still miss him very much.

This month has been a tough one for Lea. “The Days” as I think of them, from the 18th through the 29th of each month, continue to have much significance. That has been especially true for Lea this month. Christmas was so full of activity, although it was hard at times, I think we were too busy to really be taken back to the memories as we often are during a quieter month.

But it’s not all sadness. Sometimes I think I write too much about the hard times, the difficult questions from Juliana, and the grief and sadness. There is plenty of joy and love in our house, and we are thankful to God for that. I don’t have much concern anymore that what has happened will tear our family apart, as can sometimes happen we have been told. We are doing okay and moving forward together, by the grace of God, which is what is important. Now and then people continue to send notes of encouragement and thoughts toward us that truly amazes me - that people still think of us. If you do and if you still pray for us, thank you.

What will this new year bring for us and for our family? Only time will tell us…one day at a time.

Tricuspid Atresia

2009-01-17T20:33:00.000-06:00

The entry below is from my other blog, from January 17, 2008. On that day we learned for the first time that Johnny had a challenged heart, Functional Tricuspid Atresia.

January 17

Our spirits had really been lifted from the appointment the previous week. We were optimistic. They had expressed some concern about our baby’s heart last week, now that they had a good chance to look at it since the fluid in his chest had dissipated so well. But it really didn’t seem that serious, just some words like “we can’t tell much for sure, so we will have a specialist take a look, it’s probably fine”. The woman that did the ultrasound at the last appointment was really kind and enthusiastic. Lea remembered her from our appointment when she was pregnant with Juliana. Her name was Patty. She would say things about our baby boy like “Oh, there’s his beautiful face” and “look at those beautiful feet and legs”.

It was easy to think our baby is making a comeback! Thanks be to God, a miracle! What we have been praying for! How could there now be a problem with his heart, after he had overcome so much. So we didn’t think too much about it.

The pediatric cardiologist came in and with another woman working the ultrasound, the exam began. They talked a lot during the exam, in hushed tones, working quickly when the baby was in good position for them to view what they needed to see. The doctor saying move there, over here, need to see this, and that. Then the words started to emerge, we couldn’t understand everything they were saying but words like “defect” and “missing” and “undersized chamber” began to be part of the whispered conversation. At one point I asked if everything was okay and the doctor said something about needing to work quickly, while they had a good view. So I sat down next to the bed Lea was on, and my heart began to sink. How could it be? After all this, how could there be a problem with his heart?

It seemed like the exam took over an hour. As I sat looking up at the monitor, I wondered how bad the news would be. Would he live? What were his chances? I couldn’t take my eyes off the monitor, even though it really didn’t mean much to me. It was a close-up of his heart, beating away, full of life and energy. It seemed beautiful to me.

The doctor left and they had Lea sit up. She said she would come back for us in a few minutes. We talked to the woman doing the ultrasound, she said everything else looked great and commented how well the baby was doing compared to the chart from a few weeks ago. We didn’t talk much about the heart.

The doctor came back and led us down the hall. As we were walking down the hall I became filled with dread. I knew where we were going. As you enter the hall from the reception area, there is a room off to the left, first door on the left down the hall, with a sign on the wall that says “Family Room”. Inside the room is a small loveseat sofa and chair. The furniture looks terrible. It looks like what you would find in the lobby of a Motel 6. There are two end tables that are beat up and some old lamps. There is a TV in the corner with an old VCR machine. There is only one video, it’s always there on the table – “Hoosiers”. There is a kleenex dispenser on the wall. The room seems depressing. Somehow we had avoided this room, despite the bad news back before Christmas.

She led us in the room and closed the door. Here we go, I thought. Take a deep breath. I sat on the loveseat by Lea. I said to the doctor that “it can’t be good that we are in here”. She didn’t smile. She produced a drawing of a heart. She began to tell us about our son’s heart condition. He has a condition called Tricuspid Atresia with several variations, a rare congenital heart defect. On a scale of 1 to 10, it ranks a 9 for seriousness. He will need surgery, the first one right after birth. It will be a long road. The final surgery, when he is around 2 years old, is the most complicated and serious (Fontan procedure). Some kids don’t survive one of the surgeries. Some have neurological problems from the anesthesia and having surgery when they are so young. Some kinds do quite well. If he survives, he will get tired when he is active. He will probably be limited from participating in competitive sports. He may not live past his 40’s or 50’s, although there are unknowns because the techniques of the surgery and treatment options continue to evolve.

The obvious question – is this related to the fluid problem he had on his chest? She said no, that the defect forms at 8 weeks of age, when the heart is formed. The heart defect probably occurred before the fluid problem occurred.

Lea took the news hard. At one point she said “Dave does triathlons and runs, our son will want to do those things with him.” This really broke my heart. I was thinking the same thing, but to hear Lea concerned about it was really tough.

From hear on out, they want to see us twice a week. The critical issue now is that he must go full term. Before, the plan was that if the fluid returned, they would deliver him early with chances increasing each week that he remains in the womb. Now if he were to deliver early, he would be too small to survive the first surgery he needs to live. The doctor had an ominous tone to her voice when we talked about this. She talked of the decision being a tough one that only the parents could make. God, please spare us from having to make this decision. I really can’t imagine. The fluid returns, and two difficult choices. Deliver him early to reduce the fluid but put our son at high risk to save his life through the surgery he desperately needs, or allow him to remain in the womb, knowing if the fluid does not reverse again, he will probably die of heart failure before delivery. God, please let him go full term!

The appointment ended. It’s unbelievable to me how with many of the appointments we seem to leave on an extreme high or low. There appears to be no middle ground. We were there for about 4 hours again. Always a long appointment. We left somewhat in shock. Another ice cold day outside, around zero F, to fit my mood. Mom and Dad were home taking care of Juliana. We got home and I brought them into another room to tell them the news, so Juliana would not hear it. It was tough. The news was still sinking in even as I shared the news. I just got off the internet, learning more about the heart problem our baby boy has. It’s tough to read this info and think about what our future holds. The journey down this long road continues.

Remaining Hopeful

2008-12-21T21:20:00.004-06:00

Johnny would have been 8 months old yesterday.

We will soon pass by a day when the time since he died will be longer than the 4 months of life he had when he was with us. It will be more time without him then the time we had with him.

We see babies all the time that are 7-8 months old and we can't help but wonder what Johnny would be doing now. What sounds would he be making? Would he be trying to say a few words? Would he smile regularly for us now? Would he be crawling yet? Crawling...that's incredible to think about. Johnny....crawling across the floor. Lea said something yesterday that is so true. We were spending some time together looking at some of his photos. She said, "He's stuck at 4 months old." And she's right, at least in our photos. One of the greatest things about being a parent is watching your kids learn and grow and discover and do new things. We experienced that with Juliana and it really was special, with each milestone she accomplished. I can remember cheering wildly when she crawled across the floor for the first time. She just happened to do it for the first time on my birthday. With babies and toddlers it's particularly amazing because the changes happen rapidly and frequently. With Johnny, we are left to our imagination.

Yesterday, I visited the cemetery where Johnny is buried. I actually ran there, which I do most of the time when I visit him. The cemetery is along one of my most common running routes. I cross the road when the landmarks tell me it's the right place, I duck through a small gap in the lilac bushes, then a little run up a slight hill, and I'm right there. I ran there yesterday during a raging winter storm. It was snowing hard, blowing and cold. After I got there I brushed the snow away from the ground to get down to the grass. Lea had previously brought a wreath to place there that is on display on a stand, standing as a monument of the location as the ground gets buried in snow. I lingered there for awhile, in the cold, thinking about Johnny, and what he might be like at 8 months. The snow swirled around me, the wind blew against my face. But I was alone with my thoughts and barely noticed. It felt good to be there.

Today, December 21st, marks the one year anniversary of the ultrasound appointment when the doctors told us there was no hope, and that Johnny wouldn't live beyond 2-4 more weeks in the womb. I remember that day so well, and all the emotions that descended upon us. Even before that December 21st ultrasound appointment, the news was not so good for Johnny. My journal from a year ago on December 20th includes the following:

Today a woman from the hospital called to talk to us about scheduling an appointment to consider and plan a memorial service. It’s difficult to continue to seek a miracle when those trying to assist are asking you to plan for the worst outcome. At the same time, I have come to understand they are trying to prepare us for something so we are ready and will not regret being unprepared when the brief time has come and gone.

Even before the doctors told us there was no hope, and that Johnny wouldn't make it, others were already telling us to prepare for the worst.

But Johnny did make it. Miracles happened, not quite all the miracles we wanted but wonderful things happened for Johnny, God spared him from what the doctors said would be certain death and he went full term, born April 20th. And he was with us about 4 months. We are forever changed and full of thankfulness for the time we had with him.

At the cemetery, some sudden chills brought me back to the present. My running clothes were a little wet from the distance I had already run and the inactivity of standing in the cold and blowing wind in wet clothes was starting to chill me. I turned and started to walk away and then started to run. Like almost everytime I am there and then I leave, I had the same feeling of something incomplete. I think it will always be that way. Something is incomplete. Johnny isn't with us.

I turned back and walked to where I had stood just moments before. I knelt down on the frozen ground and placed my hand on the grassy place I had brushed off that was already almost lost in white from the heavy snow. My dark gloved hand was in stark contrast to the white ground. I told Johnny I loved him, that we missed him so much, and that we would never forget him.

A year ago we tried to remain hopeful for Johnny, despite all the indications that things looked grim. Many joined us in praying for a miracle and God granted that miracle. There was hope, and that hope turned to life. God was good to us, and was faithful to give us a son. Today the hope is that we will not forget Johnny and all the lessons we have learned and the blessings we have received. I want my life to forever be different because we loved and knew Johnny. We were truly blessed to care for Johnny for four months. God remains faithful to us. It's almost Christmas. There is hope.

Meeting Johnny

2008-12-07T22:43:00.003-06:00

December 7 marks the one year anniversary from the date that I count as the date we met Johnny. Last year, December 7, 2007, was our 20-week ultrasound. We arrived at the clinic in the morning. I think the appointment was around 10:00 am. It was a Friday. I remember being really excited. We were going to find out if our baby was a boy or a girl.

December 7 this year was on a Sunday. So on the previous Friday, I went down to the clinic where we had the ultrasound. I walked into the reception area and sat down, just taking it all in. The sights, the sounds….in many ways, nothing had changed. The woman at the reception area was the same. After the complications of Johnny’s pregnancy were known, we were at that clinic on a regular basis, sometimes twice a week, for almost the next 5 months. The “r” in the word “Perinatal” is still broken on the sign by the door that you walk into. There are comfortable reclining chairs in the waiting room with signs that indicate those chairs are reserved for pregnant women. Everything was the same. There were several pregnant women in the waiting area, most looking uncomfortable, some with partners, some alone. Nothing had changed.

I sat there and remembered the events of that day, one year ago. It was all coming back to me. We had never experienced anything like the shock we experienced that day of learning that there were complications with the development of our 20-week old baby. We wouldn’t learn about Johnny’s heart condition until weeks later. On December 7, in many ways, the prognosis was much worse and the question was if the baby would live or not.

I have another blog with a variety of subjects. It’s never been made public. I recorded some of the thoughts, hopes, and fears of Johnny’s pregnancy while we were walking that path. Some entries are full of exhilaration and hope. Others are heavy with doubt and fear. There is anger, there is joy. Here is an excerpt from what I wrote on December 7, 2007:

Sometimes you can just feel the difficulty creeping into your life. We went in for our 20 week ultrasound. As the technician viewed the first images of our unborn baby, the air in the room seemed to grow thick and the silence was more than just words unspoken. Our baby was not well. Other doctors arrived, discussion about what they were seeing. Then down the hall to a counsellor. More discussion based primarily on statistics. Suggestions for testing. Procedures. I was holding it together okay until I called my parents. I would then learn that one of the most difficult parts of this journey would be sharing the news with others, especially the ones you love.

In all the consultations, exams, discussions, and the waiting that day, we left there without knowing if our baby was a boy or a girl. That information just wasn’t that important at the time. The health of our baby was the only focus. A few days later we learned our baby was a boy.

As I sat there at the clinic, I overhead a couple sitting a few chairs away from me. They were talking in the hushed tones you use in a clinic waiting room, but it was quiet, and I was close to them, so I could hear a few words now and then. They had the excited voices of a couple expecting a new baby. At one point, she asked her husband or partner, “Do you have any secret hopes for a boy or a girl?” She didn’t look very pregnant. I guessed they were in for a 20-week ultrasound exam, and they were going to find out what they were having. He complained that they had been waiting a long time. She said she was hungry and got out a breakfast bar to eat. He told her to make sure she was drinking plenty of water. I sat there and listened to them. Lea and I were those two people a year ago.

The memories kept coming back. It was good to be there. At the clinic, nothing has changed. For us, everything has changed. We keep moving forward, talking, growing, grieving and healing....and remembering.

Brothers, Sisters, and Cousins

2008-12-05T07:57:00.002-06:00

The night after Thanksgiving, Juliana and her cousins were having a great time playing together. Her cousins are all boys, and they are all older than her (ages 4-8), but they are really nice to her and include her in their little group. We had been there a few days, so Juliana was really comfortable with them and was having a great time. She was laughing and having so much fun, it was hard to end the fun and tell her it was time to get ready for bed.

When Lea was putting Juliana to bed, she started talking to Lea a lot about Johnny. Juliana said, “I want to tell Johnny something.” Lea asked her what it was and she said, “I want to tell Johnny that I love him.” Lea told her they would tell Johnny during prayer time, which she did. Later, Juliana said, “I have something else that I want to tell Johnny.” This time it was, “I want to tell Johnny that I think he is sweet.” Later, Juliana again said she had something to tell Johnny, this time it was “that she really missed him”. Lea said that she missed Johnny, too. Juliana added that she wanted to also tell Johnny that Daddy missed him, too.

Since we have returned home, Juliana has been talking a lot more about Johnny. She never completely stopped talking about him, but there is really a lot of conversation about Johnny now, much more then before our Thanksgiving trip. She also brings up wanting a little sister on a frequent basis. It’s never a little brother…it’s always a little sister.

It seems like something happened with Jules spending so much time with her cousins. Some understanding that they are brothers and have a great time with each other, she had a great time with them, she had a brother but doesn’t now. Maybe she has some deeper sense of what could have been with Johnny that is now lost, maybe emotions that she feels that she probably can’t verbalize or explain to us. It’s difficult to know exactly what she is thinking, and I know she doesn’t fully understand, but something has changed.

Last night at dinner, she talked about a little sister again and said, “I would like a baby sister, and I want her to be with us forever. Johnny’s not here anymore.” Yesterday afternoon she asked what Johnny is doing in heaven now that his heart is fixed. We continue to talk about it, answering her questions, and asking her questions to keep the dialogue going.

I write a lot about Juliana, what she says about Johnny, and how she is processing it. Maybe I spent too much time thinking about it, I don’t know. I might write about Juliana and how she is doing more than I write about us. But something tells me that it will be very important to Juliana someday to know and understand what these months have been like for her. So I record these events with Juliana as they unfold, hoping that I am capturing what is important and that it will be meaningful for her. I know it is for us. Something has changed for Jules. So we are watching and listening closely to her and all she says.

Thanksgiving

2008-11-30T14:07:00.001-06:00

My sister has a wonderful tradition at Thanksgiving. She keeps a special journal that she brings out only for Thanksgiving, and in the journal she records what everyone is thankful for on that day or for the previous year. We usually go around the table or in order by age. You need to be present to get your entry in the journal. We missed a few Thanksgivings together, but we were here last year and we were together again this year.

She read the entries from last year. Lea and I both had made the comment that among other things, one of the things we were most thankful for was “the baby on the way”. Last year at Thanksgiving Lea was about 18 weeks pregnant with Johnny. We actually told my family when we got here, primarily by Lea coming in the house with a coat on and taking off her coat in front of everybody. She looked great, and was starting to show enough that we knew our family would notice right away, which they did.

It was a great week here last year, we were so happy that Lea was pregnant with our second child. Everything seemed to be falling into place for us. We were filled with thankfulness, and feeling really blessed. We got home, and about a week later had our 20 week ultrasound that revealed complications with the pregnancy, and told us that all was not completely well with Johnny. All the events of the past year unfolded from that point. It’s incredible to consider all the events and circumstances of the last year.

This year, when it was our turn to say what we are thankful about, Lea and I again both had the same thought. We are both thankful that we knew Johnny, and that we had him in our lives for the time that he was with us, both before and after his birth. One could say there is tragedy in Johnny’s story, but that isn’t the whole picture. There is also much in his brief life that is beautiful. And that’s the part of his story that we are most thankful for.

She's Three

2008-11-25T22:02:00.005-06:00

Juliana turned three last Friday. We had a little party for her on Saturday. She requested blueberry cake with blueberry frosting, so that’s what we had (blueberry muffin cupcakes, actually), inviting a few of her friends and their parents over to our house. Her birthdays have served as a reminder for me to really reflect on how she is growing up quickly. This year was no different, especially given the events of the past year and all that she has been through with us. Friday was also Lea’s birthday. Jules was born on Lea’s birthday three years ago, which despite the very difficult labor for Lea at the time, it’s now a special occurrence to celebrate the birthdays of two people that are very special to me on the same day. Like so many things for us these days, Lea’s birthday had its mix of highs and lows. Even now, Johnny is never far from our minds. Walking with and supporting Lea as she goes through the process and journey she is on remains one of the most difficult things about this for me. I wish I could carry more of the burden for her. It's just hard to see Lea go through such a difficult experience. The bond between a mother and her baby is strong.

Yesterday we drove 600 miles to visit family for the Thanksgiving holiday. So I had plenty of time to think about Lea, Juliana and many other things. It was the 24th....so much on my mind. We debated whether to make the trip on the 24th or not but decided we didn’t have many other options due to a variety of scheduling things.

During our trip, we stopped in a small town for dinner. We went into the place we stopped at to take a seat. Juliana immediately noticed a young couple with a little baby, I am guessing the baby was about what Johnathan’s age would be (7 months). I tried to steer Jules over to the opposite side of the restaurant but she wanted to sit closer to the baby to watch him. She loves babies. He was a cute little guy. She kept her eye on him during dinner and talked about him a few times. She asked me what his name was.

On Saturday, after Juliana’s birthday party, I was going through the bedtime routine with her, reading books and having story and song time. At one point she said, “Are we going to have a birthday party for Johnny?” I told her that we would next spring, when his birthday rolls around. She told me she would like that. Then she said something that again amazed me that this little girl seems to have so much awareness and depth to what has happened. She said, “I miss Johnny…I wish he was here for my birthday.” We talked about it for awhile, how we would have had fun having Johnny at the party, and how Johnny would have enjoyed attending. We talked about where he is, and how he is really happy, and that he is probably having a party every day like what we had done earlier that day for Juliana. Then she asked me if Johnny was her baby brother. I explained that he was, then she said, “Daddy, I would like a baby sister”. This is the first time in a long time, since long before Johnny died, that she has said anything to us about wanting a little brother or sister. We talked about things for awhile longer, before she was asleep.

During the 600 mile trek, Juliana spent most of her time “writing” in a little notebook her Aunt Megan had given her for her birthday, her favorite stuffed animal by her side ("Kitty"). She was a great traveler for us, and we are thankful the trip went so well. This was by far her longest road trip with us. Her writing was meticulous, recording neat little letters or letter-like symbols on page after page of paper, written horizontally along the lines, at times alternating colors for her letter symbols. She started out writing down all the things that we were seeing. She would ask us for ideas, and then return to writing, and then ask again.

Later in the day, she switched to writing “stories, songs, and prayers” as she described it when we asked her about her work. She would sometimes sing along to herself, while she was writing. Sometimes she was quiet, like she was deep in thought as she wrote in her “journal”. When it was finally dark and we were still driving, she closed up the notebook, but wanted it close and by her side.

I now look at the pages and her little symbols, and think about our trip, what she told us she was writing, how she is three years old now, what she told me the night of her birthday party. I think about all we have been through as a family, and the depth of what she seems to understand and the emotion she seems to feel and express. I look at the pages in her notebook, and I can’t read her little symbols and letters as words and sentences. But I am certain there is something in there about Johnny. It was the 24th. For Lea and I, Johnny was often in our thoughts on that long trip. And I have no doubt Juliana was thinking and writing about him, too.

Seeing what I don't want to become

2008-11-20T23:24:00.004-06:00

I was driving in my truck earlier this week, when a familiar song came on the radio. The song was one that was part of Johnny's funeral. I would have thought that it would take me back to a memory of the funeral, but it didn't. Instead, hearing that song instantly brought back a memory with Johnny from way back in May.

It was May 19th. Johnny was in the hospital. He was almost one month old and we hadn't had him home yet. He had made it through his surgeries and was doing quite well but he had a number of lingering things going on that were keeping him from going home. It had not been a good day, some mix-ups at the hospital, appointment and exam scheduling problems, they weren't letting Johnny have food because the doctors were worried about an infection that turned out to be nothing. Later that day Johnny would go in for an MRI to examine his neurological development. It was stressful at the time to think about all the "what if's" the doctors had laid out for us but in the end everything was fine neurologically, but we didn't know it at the time. In order to have the MRI, they had to use anesthesia to keep Johnny still on the table so the whole thing was almost like a surgery as far as the time required and waiting.

It was late in the day, probably after 4 or 5pm and I had just arrived to the surgery waiting area. Unlike any other time, the waiting area was empty. The drab little room had become an all too familiar place. The monitor on the wall had multiple rows of entries showing other kids from the day that had undergone surgery. All rows had the little symbol meaning "recovery room" or "exit" except the line with the birth date 04/20/2008 - Johnny's entry.

I sat down on a chair and opened my laptop, probably to record a blog entry or do some work or email, I can't remember. I had not been there long when a man and a woman walked into the room. They were older then me, probably in their late 40's or early 50's. The woman was walking with a cane and looked to have a disability of some sort with her leg. The man was talking to her. She wasn't saying much. As they took their seats, I couldn't help but over hear the conversation in the quiet of the waiting room.

The man was going on and on about all that had gone wrong that day, the problems with the hospital, the doctors, everything. The woman sat quietly beside him, staring straight ahead. I guessed they were married. The man started to talk about their daughter. I acted like I was continuing to work on my laptop, but I was listening. It sounded like their daughter was older, maybe mid or late teens, and had been in the hospital many times. I couldn't figure out what her diagnosis was, but it sounded like they had been through a long series of medical issues and challenges with their daughter. She was in surgery for something.

The man didn't stop talking. He was negative and discouraging about everything, just going on and on about all of their problems.

A doctor came out to see them. The man was short tempered and unpleasant with the doctors. His wife was quiet and looked visibly embarrassed over how the man was acting. The doctor left and they returned to their seats. The man then gave his wife a long sermon about all the things wrong with doctors, and the hospital. I felt terrible for his wife. Here this woman was, with her child in the hospital going through surgery, and she was with one of the most negative and discouraging people I had observed in a long time.

As I sat there taking all this in, I contemplated our own situation with Johnny. And I realized that as much as I didn't want to admit it, I could turn out just like this man I was watching. The stress of having a child in the hospital, going through so much, trying to balance home life with everything else, trying to maintain your job, witnessing things as a husband and father for your family that are just heartbreaking....it all presses down on you on a daily basis. It looked like this couple had been going through this for years. And at least for the man, it had beaten him down to the point that he didn't seem like he had much if any hope left. His mind and attitude was lost in a world of negative thoughts and bitterness over his situation, and his family was suffering because of it.

I thought back to that scene many times in the coming weeks and months. On more than one occasion, I prayed to God that he would lift and carry the burdens and difficulties for me, and for our family, and protect us from falling into a state of bitterness and lost hope from which we might never recover. In the weeks after Johnny died, there were moments when I really felt like I was at a crossroads. The things that had happened to us could tear us apart, and ruin our lives. I had heard of this happening to other people in similar circumstances. I don't know if you ever reach a point where you can say you have put enough distance between yourself and what has happened that you are "out of the woods" and everybody will be "fine". We are forever changed by what has happened, the key question is what kind of change is it? With each day, by the grace of God, I feel that our family is continuing on a path of healing. There are certainly difficult days and challenges, but I have more reassurance each day that I will not become like that man I observed that day. And for that, I am thankful.

Images, Sounds, and Life

2008-10-25T19:37:00.004-05:00

Yesterday marked two months for us since Johnny died. All day long, the clock prompted me with reminders of how things unfolded for us that day. I wonder sometimes if the 24th will ever be just another day. Lea and I were together at the cemetery, at Johnny's grave site, when the time of his death passed. It was where I wanted to be. Lea had visited the site earlier in the day, so it was the second time there for her. We stood there for awhile. The air was cool. The sun was shining. The leaves in the trees nearby are bright with color. I brushed the fallen leaves away from the faint outline that remains cut in the grass of where the grave is.

In the evening, after we had Juliana asleep and everything was quiet, we watched the video footage we had of Johnny. It was the first time we had watched the video footage since Johnny had died. I had often thought that I had wished I had shot more video. No matter how much we had, I knew it wouldn't seem like enough. I really wasn't even sure what I had. I remembered shooting some scenes, but wasn't completely sure of all the details.

We sat in front of the TV, side by side in the dark, and started the video rolling. And then suddenly there he was, our little Johnny, on the screen. Our first immediate impression was the same...we couldn't believe how great he looked. How full of life, movement, and energy. We have pictures of him that we look at frequently, and he looks good in the pictures, but to hear his sounds again was amazing. The quiet little cooing noises he made when he was happy, and how upset he could get when Lea was giving him a bath. To see those images of him moving around, looking at Juliana and us, reacting to us, just brings home the reality of how stunned I think we were that he didn't make it. He really was in a good place before his surgery. It's still hard to believe sometimes that he didn't pull through it. It's wonderful to look at those video images and hear those sounds, but at the same time it intensifies the loss.

The first scene was not long after he was born, when Juliana met him for the first time. Juliana was on Lea's lap, with Johnny on her lap, Lea's hands carefully holding Johnny from around Juliana. Juliana's beaming face projected all the excitement and wonder that comes with meeting your little brother for the first time. To watch her little hand patting him again, while she was all smiles, brought back a lot of memories of that day and how special that was. Your kids only meet eachother for the first time once.

There is a scene where Johnny is under this huge mobile we bought for him. I remember talking to Lea about getting him a mobile and we basically agreed to get him the best and biggest one she could find. The one she brought home was amazing. It was HUGE with all these moving parts and colors. I used to think it was like Valleyfair (an amusement park near here) for him. He couldn't take more than about 30-45 minutes of it because it would get him so overstimulated that he would get fussy and wouldn't sleep. But when it was going, if he was well rested, he really loved it and would just totally focus on it and watch it closely, going around and around. I've captured it on video. He's totally content and focused on the mobile, making these sweet little noises as it goes around and around. He occasionally does his little smile that was starting to emerge, evidence he is enjoying the moment. He looks just great, all wiggly and happy, cute as only a baby can be, and full of life.

Another scene is of Johnny in his swing, with Juliana sitting in front of him. They were always quite the pair when they were together like that. Jules is reading to him, and patting him on the head. You can tell that Johnny is getting kind of tired, but he is mesmerized by Jules and is enjoying the entertainment. Juliana puts down the books and takes Johnny by the hands and starts singing "Row, row, row your boat, gently down the stream...." while doing little arm motions with Johnny like they are rowing a boat together. It reminded me again how much I miss seeing them together.

We shot some video on my birthday. Jules is helping me with the candles on the cake. Johnny is in the bouncy seat nearby, on the table. Everybody sings happy birthday and I blow out the candles. I open some gifts. I remember being so happy that day. Two wonderful little kids, my birthday, it's summer time, Johnny was doing well, Lea is happy. Lea has the camera. At one point I grab Juliana with one arm, and get my other arm under Johnny. I'm leaning over close to both of them. Juliana is squirming around like toddlers can do when you grab them unexpectedly. In an excited voice I say, "It's my first birthday with two kids!" and I give them both a kiss. I put them down and say, "I am blessed!" It was a wonderful birthday.

Besides these scenes, there are other images, too. The video footage is without a doubt a treasure for us. After watching, we immediately made a back-up copy. Lea is going to find someone that can transfer the footage to a DVD that we will also back-up multiple places. Our plan is to get a fire proof box of some sort or lease a safe deposit box to put everything in: the video, photographs, the DVD of the funeral....all the precious images, the sounds, the sites, the memories. In some ways, it was difficult to see those images, to hear those sounds, and see all the life that Johnny had. It makes the loss all the more real, and the "why" questions resurface again. But at the same time, it helps to see evidence that he really was with us, he really was doing well, and that we all really enjoyed our time with him. He blessed all of us in tremendous ways. He made the most of his four months.

Six months

2008-10-21T23:06:00.004-05:00

It has been awhile since the last post. Life keeps moving forward for us, and in some ways, there hasn't been that much new to report. We miss Johnny – that hasn’t changed. It’s different day to day. Some days are more difficult than others.

Johnny would have been 6 months old yesterday. We always thought six months would be a significant milestone for us. He would have his two surgeries behind him. It would most likely be a long time before he needed another one. We figured even if his Glenn surgery was difficult, we would for sure have him home by late September or so and have him settled back into a routine and doing well by the time he was 6 months old. When Juliana reached 6 months of age, I remember everything got easier all of a sudden. She started sleeping better, and longer. She was easier to comfort, and seemed more content most of the time. It was a milestone, and we thought we would experience the same thing with Johnny. The six month milestone is here, but Johnny isn’t. We miss him dearly.

I came upon a scrap of paper the other day, it was a torn out sheet from a small spiral notebook I keep in my work briefcase. The piece of paper was buried in a folder with some other documents in my briefcase. There was a list at the top of return calls I needed to make. Five people listed, two crossed off. On the bottom half of the page was the following, written in blue ink pen:

1:30 pm
HR 191
BP 80/40 to 90/50
Oxygen at 62%
SVCP 17

Johnny’s vital signs. I could probably go back and look at my posts updating his condition and figure out exactly when this was. It was about 2 months ago. He was out of surgery, his heart rate was elevated, it was probably the day after surgery, August 20th. I was monitoring how he was doing, hour to hour, and must have made some notes to remember his baseline condition at the time. I was at the hospital with my laptop and briefcase, checking messages, updating the blog, staying close to Johnny to monitor his progress, and hoping and praying he would pull out of it and that his heart rate would drop down to a more normal level, which it eventually did. The next day he was doing much better.

I held that piece of paper, stared at it for a little while, thinking back to those days. Then I dropped it in the recycle waste basket in my office. After about 15 seconds, I stopped what I was doing, thought about what I had done, and picked it back up, reading it over again for a longer time. I couldn’t part with it. It might be the last hand written notes I have of Johnny. I tucked it safely into a file and returned it to my briefcase. And so it goes……suddenly an obscure piece of paper I haven’t seen in weeks has great meaning to me and I can’t throw it away. It’s strange, the thoughts you have and emotions you experience. What we are going through continues to evolve.

Lea is doing okay, although some days and weeks are more difficult than others. The last few weeks have been more emotionally difficult for her then for me. Most days we are at different places with things, but we continue to support each other, give each other space when we need to, and try and offer encouragement to each other. We are both getting along, functioning, caring for Juliana, doing the daily tasks that need to be done. For that we are thankful, as we have heard of people that have struggled to the point of not being able to care for themselves or their children when something like this happens. I can totally understand how this could happen, which makes me more thankful to God for giving us the strength we need to press ahead, despite the difficulty.

Juliana really seems to be doing well. I tell people that most days I think she might be the most well adjusted person in the household. She still talks about Johnny, nearly every day at some point, and we encourage her to continue to do so. She talks about him mostly in a happy way, remembering something about him or stating that she misses him, but saying “we have pictures to help us remember him.” I think it’s still difficult for her to see a little baby. When this happens, she really tunes in to the child and watches closely. And she seems to have some more vivid memories of things when we go to our church, where we had the funeral. She is often more emotional after we come home from church then at any other time. She’s moving forward, just like us. We are so thankful she seems to have adjusted okay to what has happened. I am sure there will be difficult times ahead, but at least for now, she seems to be in a really good place.

I shoot photographs of Juliana every month, within a few days of the 21st (her birthday date), to keep a running photo log of her growth and how she is changing. I don’t have an October photo formatted yet, but I will conclude with a couple of her monthly photos from August and September. She continues to bring us great joy and we are so thankful for her. We appreciate the gift of her life that we have been given more than ever before. It’s difficult to imagine that the pain of going through this could be worse, but I have often thought that it just might be if the child lost was your only child. She keeps us going, she requires us to press ahead for her sake, and she causes much laughter and happiness in our home.

August 2008

September 2008

Thanks so much for the continued thoughts and prayers for us. I am amazed that we continue to receive the occasional note, card, or email offering encouragement and thoughts of hope for us and for our family. People continue to pray for us. We know we are not alone in this. And knowing that helps. Thank you.

Letting go...and remembering

2008-09-29T20:22:00.003-05:00

A few weeks ago I wrote about Johnny's funeral ceremony and now I will share a few thoughts and memories about the burial that followed. The day continues to be very significant for us and I believe always will be. Our plan for the burial was a very simple ceremony, with meaning and significance, as we said one last goodbye to Johnny.

We arrived at the cemetery late, maybe around 1:15 or 1:30 pm. I think we may have been one of the last vehicles there except for my parents who were following us. There was no formal processional so many had arrived before us and were waiting patiently. Back at the church, before we departed, we had a little delay with Juliana.....she needed to go to the bathroom, or at least she thought she did. We were in the toddler Sunday school room, trying to use the special bathroom for the toddlers. Here we were with a squirrely little toddler girl, laughing and giggling, as we tried to help her take care of things. The episode was in stark contrast to the ceremony with Johnny that had just concluded maybe 90 minutes earlier. We didn't mind, it was okay, almost fitting for the occasion. Through everything, Juliana has never let us forget that we are still parents and that we are thankful to continue to experience the joy of children. She gave us a little break of laughter on a day filled with tears and sadness. We are so thankful we have her with us.

After we finally had Juliana loaded in the care, we drove to the cemetery. We turned in to the main entrance off Larpenteur Avenue. Vehicles of family and friends were lined up near the chapel, with the black sedan of the funeral director in the lead. He moved up his sedan and we fell in place with the family van directly behind him. Others followed as we slowly made our way up the cemetery road to the grave site.

Shortly after we were moving down the cemetery road, Juliana, in an excited voice said, “All the pictures at the celebration had Johnny in them!” She was referring to the photographs we had shown as a slide show at the end of the ceremony while the “Hallelujah” song had played. Lea and I looked at each other and smiled a little…..once again the awareness of our little Juliana to everything that was going on amazed me. I recall asking her something about if she liked the photos, and she said she did.

We arrived at the grave site and pulled off to the side of the road. I remember the ash tree nearby was providing a near perfect area of shade for the grave site. I remember thinking that it was a beautiful day. The air was clear, bright blue sky, nice sunshine, warm, but with a nice light breeze blowing. It could not have been a much more beautiful day.

We were so glad to have found the site we chose for Johnny. It was nice, up on a hill, near the north side of the cemetery. There are three crab apple trees close by that will look beautiful in the spring, just like the crab apple tree we have in our front yard. A row of lilac bushes extends along the property line of the cemetery, not far from where Johnny is. The ash tree is nice and will provide some welcome shade in the summer months to keep the grass a little greener. There is a water spigot very close that we can use to water the arrangement of flowers we have there.

Everyone got out of their cars and moved toward the grave site. They had arranged a large square of green outdoor carpeting up and over the mound of dirt and across the grave. There was a little raised up area under the green carpeting, like a platform, for the casket. After everyone had gathered around, I walked with Jim, our funeral director, over to his sedan to get Johnny. He first took out the roses that we had used at the ceremony as a symbol of our family, and laid them down near the platform area where the casket would go. Then he carefully lifted the casket out and placed it in my arms. The two baby blankets, one with little sailboats and whales, the other one the baby blue blanket my mom had knitted, were laying across the casket.
It was a short walk with Johnny from the sedan over to the grave. I carefully placed him down on the raised platform, made sure he was in the right direction, and adjusted his blankets. Everyone gathered around a little closer. Lea was on my right side, holding Juliana. Having him back in front of us brought back the waves of emotion that had subsided a little since the ceremony earlier that morning.

Sid, one of our pastors, opened the service by saying a few words about the significance of the day and why we were there. At some point Juliana got a little impatient and wanted to get down out of Lea’s arms, and upon doing so walked over to one of her aunts to be held. Lea and I remained side by side, holding hands.

When Sid was finished, Alice, our pastor for Children’s Ministries, asked everyone to gather around and hold hands in a circle. She then led us in a prayer. I was holding hands with a friend named Heidi on my left. Lea was on my right. Not long after we had started, I felt a little hand on mine and looked down to see Juliana. She had gotten down out of her aunts arms and wanted to be between mommy and daddy. She smiled up at me as we each took her hand and had her between us.

Alice finished the prayer. It was time to lower Johnny into the grave.

Earlier in the week, I had talked to the cemetery grounds keepers and our funeral director about the burial service and how I wanted to be the one to place Johnny in the grave. My thinking was the same as the funeral service and carrying him in and out of the ceremony. How could I let anyone else do it? It was the last time I would hold Johnny’s physical presence. The last time to feel his weight in my arms and hands. The last chance to physically care for him in a small way. I had asked how deep the grave would be. Four feet they told me, cut in the outline of a rectangle, large enough to accommodate the dimensions of the casket. Four feet seemed like a long way down to place something at the bottom. I asked about using anything to lower him in, they told me they didn’t use anything, that I would be okay. I just couldn't imagine letting the grounds keepers do it while we stood by.

We paused for a brief moment, after Alice was done with the prayer. When it was time, I looked at Lea and asked if she was ready. She gave me a small nod. I looked at Jim to let him know we were ready.

I remember taking off the jacket of my black suit and handing it to Lea. Then I tucked the lower end of the baby blue silk tie I was wearing into a gap between the buttons of my pressed white shirt. I hadn’t thought about doing this but it just came naturally. Looking back now it seems so fitting. I was about to do a little labor to care for our son so I was getting ready, just like I always did. Coming home from work, I would often change out of my nicer clothes before holding Johnny. You quickly learn, as I did with Juliana and again with Johnny, that babies don’t care what you are wearing and often create all sorts of accidents so you might as well be ready. When Johnny was in the hospital, I would wear older shirts when we were there knowing that we would be holding him and that it was important to be comfortable and have something on that could be sacrificed due to a little mishap. If I had a suit or jacket on, and came home from work to see Johnny, I wouldn’t have picked him up with my jacket on. I would have taken it off, just like at this moment, to hold him close.

After removing my jacket and fixing my tie, I leaned over and picked up the little blankets on Johnny’s casket, and handed them to Lea. I picked up Johnny, and held him in my arms, as Jim and the cemetery workers pulled back the green carpet to expose the grave. Jim carefully placed a section of the green carpet across the front side of the grave so I would have something to kneel on. It was time. I carefully lowered Johnny to the ground in front of the grave, and got down on my knees. I reached out to take hold of each end of the casket, and held each end tightly in my hands. I moved Johnny forward over the grave and began to lower him in. I remember thinking that the grave looked deep. I remember seeing the bright, clean wood of a tree root cut diagonally across the far side of the wall of the grave. As I carefully lowered Johnny down, I could smell the damp, musty odor of the ground, and I had a sense of cooler temperatures as I kept lowering him in, my head and shoulders now leaned into the grave. I remember the feeling of gently touching the bottom, adjusting the casket to be perfectly square with the grave, and then slowly letting go, for the last time, and lifting my arms out of the grave.

I remember just kneeling there for a brief moment, pausing to collect myself and looking at the casket in the grave.

When I stood up, Lea and I put an arm around each other and leaned into each other. We cried and held each other briefly. Then we took the roses that we had brought with us from the funeral and prepared to drop them in the grave on top of the casket. At the funeral earlier that day, the four roses had represented our family. Two rose buds to symbolize our children, two roses in bloom to symbolize Lea and I. Juliana and I now each had one, Lea had two. A friend asked me later what the significance was for placing the roses in the grave at the burial. Here is how I replied:

When Johnny died, our hopes and dreams for him died with him. We know he is in a better place, but our loss is what we have lost by no longer having him with us here on earth. So the flowers represent our shattered dreams, our lost hopes, as individuals and as a family. Jules and her role as a big sister, Lea and I as his parents and all we will not experience that we wanted to with our son. All lost, laid to rest in the grave with Johnny. Beautiful dreams, represented by beautiful flowers.

It’s been a month since the funeral, and the grief over the loss of all that we will not experience with Johnny remains a central part of the pain. Children and babies are so full of life, possibilities, hope, and potential. They aren’t supposed to just leave you one day while they are still so young. We know all the right ways to think about what has happened, but it’s still very difficult. You can know in your mind how to process things and maintain some level of hope, even in such difficult circumstances, but your heart and the feelings you have are another matter.

After we dropped the roses into the grave, we paused again briefly to hold each other and contemplate the moment. The burial ceremony was almost complete. Then I went around to the other side of the small mound of dirt and pulled back a section of the green outdoor carpeting. I found the shovel the grounds keeper had left there and carefully shoveled a scoop of dirt from the mound and then carried it over to the grave and let it fall into the opening, onto the casket. I repeated the same motion again, making it two shovel-full scoops of dirt, one for Lea, one for me, dropped into the grave, as we laid Johnny to rest and said a final good-bye.

I set the shovel down and went back to Lea’s side. We again embraced side by side, arm in arm, and stood there for awhile. Everyone there stood with us, gathered around in clusters in various directions from the grave. I offered a final prayer for Johnny and the service. I can’t remember what I said, maybe something about thanking God for the brief time we had with Johnny, and asking Him to help us through this difficult time. After the prayer, we approached those that had come to the burial to join us. I shook some hands and embraced those that were there, thanking everyone for coming. The service was concluding.

People lingered for awhile, visiting quietly, before slowly starting to depart. There were some last goodbyes to us as people started to leave. After we gave Juliana some good hugs goodbye, my family left with her to bring her home for a nap. Lea spent some time at the grave, kneeling and contemplating our loss. Lea and I stayed until nearly everyone was gone, except for Jim, our funeral director, the groundskeepers, and our friend Tom. Before we left, I shook hands with Jim. He told me the funeral was one of the most beautiful he had ever been a part of. I thanked him for his help and told him I would call him later in the week to go over some last details. Lea and I walked over to the grave one more time before departing. It was hard to leave and to let go.

Finally, we turned and walked over to get into the van, not really knowing where we were going to go. I can’t describe the feelings we had at that moment after experiencing what we had done that day. We knew we didn’t want to be apart, but beyond that, we didn’t know much else. After we drove off, we stopped at a gas station and got some water to drink, then we drove over to a park and found a shady bench to sit down on.

Over the next couple of hours, we talked a lot about how we both felt so lost, without direction, and the void we were experiencing in our lives. Johhathan had required so much of us, and now all of a sudden he was gone. Our life with him was over. The week leading up to the funeral had been intense and filled with countless tasks and details. Now all was concluded, and for the first time, we were experiencing a different kind of loss and emptiness. We sat on the bench for a long time, watching people walking by. We just sat there talking, staying close. Later we drove around, to no where in particular. For a few hours, we did nothing except stay together. For the first time in many months, we were wasting time, just drifting about, doing nothing. And at the same time, it seemed like we were doing what we needed to be doing.

At some point I called home to make sure Juliana was okay. She was sleeping fine, having a nice, quiet nap. After some time, we finally went home. I remember pulling in the drive way, seeing the house, the life we were returning to, and just wondering if we could pick up the pieces and keep moving forward as a family. With God’s help and the help of many, many people, we have been able to do just that. It's not always easy, but we are making progress.

We have been back to the cemetery and grave site many times since that day, to reflect on Johnny, his life, and the impact the last several months has had on us. Johnny’s funeral ceremony and the burial turned out to be many important things for us. It was a time to honor Johnny’s life and all he accomplished, to grieve, to begin to heal, to come together as an extended family and as a community of friends, and for Lea and I a chance to parent him and care for him one last time. For Juliana, she took what she needed from the day to capture some important memories of saying goodbye and remembering her little brother. It was a time to give thanks to God for the blessing of Johnny’s four months with us, and to consider all he gave to us and to his family in that brief time. Today marks the one month anniversary from that day – August 29th.

Meaningful Dates, Significant Days

2008-09-24T20:35:00.003-05:00

Today marks one month from the date when we lost Johnny - August 24th. I wonder sometimes how long the dates and days will hold so much significance and bring back so many memories. Last Friday was the one month date from when we brought him to the hospital and he had his surgery. The next day, Saturday, September 20th, he would have been five months old.

I was at work today and during the afternoon I stepped away and went outside for a period of time. It was about 3:10 pm when I left. I needed a break, my mind was on the significance of the date all day long, but this afternoon it was especially weighing on me. It was good to step outside, into the sunshine, and feel the cool breeze blowing. I just sat down for a little while, alone, and thought about Johnny. Then I called Lea. It was good to be together on the phone when the time passed - 3:24 pm - the moment we lost him. I wanted to be with her, and wished I was home, but at least we were together, talking. Not an easy day for either one of us.

If it’s not the dates of the month, it’s the days of the week. Every Monday I think about bringing Johnny to his pre-op appointment and spending time with him and Lea all afternoon at the hospital. Every Tuesday I think about bringing him back to the hospital on Tuesday, August 19th, and waiting for him to come out of surgery. Fridays always remind me of the funeral. Sunday afternoons are filled with memories of the Sunday afternoon we held Johnny for the last time as he slipped away from us.

My sense is it will be like this for awhile. And we have other dates coming up that I know will hold a lot of significance. Although sometimes difficult, it feels okay, like a natural part of the process. In some ways, I am thankful for the reminders, as it causes us to pause and consider the reality of what has happened, to think of Johnny, and to reconsider our priorities and what is important to us and to our family. Johnny keeps giving us gifts.

I shared at the funeral that the date (August 29) was very close to the date when Lea told me she was pregnant with Johnny, one year earlier. It was late August, I don’t remember the exact day but it was close, and might well have been the very same day. We have a complete year of memories with Johnny. At least for now, his life has become our new calendar. The significant and meaningful days and dates continue to roll by, as we continue to make slow progress on this journey of living without him, and trying to remember everything about him.

Juliana says Goodbye - Part II

2008-09-21T22:33:00.000-05:00

That first night after we lost Johnny, after Juliana was asleep, I remember talking with Lea and just being in a state of total disbelief of what had happened. It was a Sunday night, 4 weeks ago tonight. Even now there are moments where we just can’t believe what has happened to us, and to our family. Johnny’s gone….sometimes it’s just almost impossible to grasp. But you keep pressing forward, because you have to, for each other, for Juliana, trying to come to terms with what has happened as best you can. And Juliana continues to come to terms with it, too. She has made a lot of progress in the past few weeks, and I will attempt to share how things have evolved for her with this post.

Juliana slept okay that first night, but after crying during the bedtime routine. She was already starting to process the emotions of losing her little brother. It had been an emotional day for her. She also woke up earlier than normal on Monday, the day after we lost Johnny, crying some that first morning. Monday and Tuesday were filled with countless questions from Juliana. She was crying about Johnny now and then but I wouldn’t describe it as showing significant emotion yet, we knew it would catch up to her. And that was okay. We knew things had to evolve for her on their own schedule, as she processed things, and worked through them. We were told that she would ask many, many questions to test that the answers were consistent, and she began to do just that. The questions were all centered around three basic themes:

Where is Johnny? - He’s in heaven.
Why is he in heaven? - His heart needed fixing and the doctors couldn’t fix it so he died.
Why couldn’t they fix his heart? - Sometimes things that are broken just can’t be fixed, no matter how hard everyone tries to fix them.

The questions continued, as did our answers. Often she would ask the questions, we would answer, and she would be on to other things, completely accepting our answers at that moment until she needed to ask again, which was fine. She could ask as much as she wanted to.

She was often a great comfort to us during those days right after we lost Johnny, which at times was almost alarming to us. We just didn’t want to put her in a position where she would feel responsible for caring for us, as silly as that sounds since she isn’t even three years old yet, but it would seem possible to do this. As long as it didn’t get too out of hand, we had been told that it would be okay, and it was her own way of being involved and processing what mommy and daddy were going through. I remember crying with Lea and having her bring Kleenex to us to dry our eyes. We wanted to be real with her, to show her the emotion we were feeling, without causing her distress that she wasn’t safe. Through the process I realized that much like everything with a young child, you are modeling for them how to do things and how to live, to love, and to grieve. She would grieve through this as well as she observed us dealing with things in a healthy way, so it was important to try and share the experience with her from within a positive framework.

Wednesday she had her first real time of letting out significant emotion and crying hard for Johnny. It was pretty rough, and the crying lasted a long time. It was in the evening, at bedtime. We had noticed earlier in the week when she was starting to cry for Johnny that her cry was a special cry, unique for her, one that we had never really heard before. In some ways it made sense, because this was such a special and different kind of sorrow for her. Lea was helping her go to bed that night. She held her longer than normal, until the crying subsided. She woke up in the middle of the night, crying again. I went in to hold her, and held her for a long time. I remember asking her if she could tell me what was wrong. Over and over she would say, “I don’t know.” We became aware that she would show emotion but couldn’t link it to Johnny, missing him, and the sorrow she was feeling about him. We would talk to her about it and try to help her link her emotions with the source.

Wednesday and Thursday we began to talk about the upcoming funeral, to prepare her for what was going to happen and the changes that she would see in our house with so many different family members arriving. We talked about the funeral and told her it would be a celebration at church for Johnny. We read through one of the books the people at Child Life had given us – about death and why people die.

Friday, after the funeral and later that night, was a particularly difficult time for Juliana, in the evening when it was bed time. She was upset and crying, doing her unique sounding cry for Johnny. I held her close and tried to talk to her about things. When she cried like this, we would ask what was wrong, and she was again saying, “I don’t know”, which is very unusual for her. She is usually very good at telling us exactly what is wrong. I knew what it was about. She was grieving the loss of her little brother. She knows she misses him, but she doesn’t always fully understand the emotion she feels because she misses him. Linking the emotional piece she is feeling with the word that describes the emotion is the challenge for her, so we try and help her do that. As she was crying, we would talk about what it might be, then eventually get around to talking about Johnny, how we miss him, how we wish he was still with us, how he was so much fun. Just like us, she just needed to get those emotions expressed, as part of her own healing process.

Later that evening, that Friday night after the funeral, I remember it was the first time she was crying hard and also saying, “I miss Johnny” over and over again. We kept talking about it until she was calm again, and then she fell asleep.

Some of the best advice I received from the Child Life people was that she would take what she needed to take from the various aspects of his death, the few days afterward, the funeral, and everything else surrounding how our lives had changed and the unique things we were experiencing. It was really true and I could see it evolving that way. We have learned a great deal about how the mind of a small child works through an experience like this.

That Friday night, as we talked through things, she told me, “Daddy, I want to hold a flower tomorrow to remember Johnny.” A little later, she said, “Can we light a candle tomorrow for Johnny? To remember that he is in heaven?” At the funeral, she had placed a flower on his casket, and had joined Lea and I when we lit a candle to symbolize that Johnny was now in heaven. At the burial, she had dropped a rose into the grave, after the casket was lowered. Those were the things that she took with her from the ceremony. Things she connected with, that she needed to own for herself. Connections with Johnny, with us, and with the ceremony, that were important for her.

On the weekend, for the first time, we started to talk about how all of us were doing. She would sometimes reply that we seemed “sad” so we would explain that we were sad and missed Johnny but we were also happy that she was with us. Sometimes when we would talk about how we were doing, she would say mommy and daddy are “mad”. It’s possible that she may have been meaning “sad” and just got the word wrong, but more likely she may have really thought we were mad because Johnny was gone and Juliana was here, like we wished it was the other way around. Before that, I don’t remember her ever saying that anybody was mad. We stepped up our efforts to reassure her that we were really glad and happy that she was still with us.

By Monday, a week after Johnny had died and three days after the funeral, we had made good progress and she was back to understanding that even though we were sad that Johnny wasn’t with us, we were really happy that she was with us. The next week would see a lot of ups and downs, many questions from her, a lot of time holding her when she was crying for Johnny and when she needed it, or for that matter when we needed it, and a general progress of her working through her sorrow. It was not uncommon for her to wake up crying, upset, early in the morning or the middle of the night, and Lea or I would just hold her for a long time.

A week later, two weeks after we lost Johnny, the periods of a lot of crying were ending. She was coming to terms with what had happened. Not a day goes by that she doesn’t mention something about Johnny. She carefully watches us and our emotions. A central theme of our talks about Johnny is how we are sad that Johnny isn’t with us, but we are happy Juliana is here and that we are together. We have checked in with her often, asking her questions, to make sure she understands that we are glad she is with us, we don’t wish that she had gone to heaven instead of Johnny, that our hearts are all good and don’t need fixing, and several other questions with a similar theme.

On a regular basis, almost every day, there are instances where she talks about Johnny. Sometimes it’s hard, but we know it’s necessary and we are thankful that she is so open to talk to us and share her emotions and thoughts with us as she works through this process. Below are some examples of the typical interactions we have.

One day Juliana saw a program from Johnny’s funeral on our dresser in our bedroom. The program had a picture of Johnny on the front cover. Juliana asked Lea if she could have the program. Lea gave it to her, and she said, “See, this is a picture of Johnny, it makes us happy to see a picture of him, like he is still here with us.” We had talked long ago about pictures, and how they help us if we miss people. The discussion was back when Johnny went to the hospital. We had talked about how he would be at the hospital but we would keep pictures of him close to us at the house while he was gone.

I had just come home from work when Juliana was holding the program from the funeral. I walked in to see Lea holding Juliana and Juliana holding the program with Johnny’s photo. She held it out for me, like she wanted me to take it. So I asked her if that is what she was doing, that she wanted me to have the program, and she said, “Yeah” in a soft and serious voice. As soon as I took it, she said, “It will make you happy, to remember Johnny….” Instances like this happen regularly in our home now. We try and comfort each other, Juliana comforts us in her own way, and we work to help her navigate through her emotions.

Another instance occurred before she went to pre-school one morning. She was prancing around all happy and in good spirits in the morning. She went into our bedroom, I followed her in there, and she found Johnny’s little mirror with cute little bugs around the edges. We got this for him and he just loved it. We would stand it on end and he would lay on his side and look at himself, reaching for the little toy bugs. It was really fun to watch him and Juliana always liked watching him play with the mirror, too. She would say, “He can see himself!” when he was having a great time with it.

That morning she held the mirror and said, “We should bring this upstairs and put it away.” The child specialists have told me that when she says things like that about Johnny’s things, it’s probably because she thinks they might make us sad. So I said, “I don’t know, I like having some of Johnny’s things out, do you remember how much fun we used to have with him when he played with that mirror?” She said she did, and then we talked a little about how nice it is that we have so many good memories of Johnny. Then she said, “We can be happy about things, and be sad about other things at the same time.” We have been talking about this a lot lately, that if we are sad about Johnny it doesn’t mean we are sad about everything.

Last weekend all of us went to church together. For the first time since the funeral, all three of us were in the sanctuary together. It brought back some memories and emotions for all of us, including Juliana. Later that day, when Juliana woke up from her nap, she was talking about Johnny and was a little upset about some things, crying a little and fussy. We talked to her for awhile about it, and then she seemed fine. That evening, when Lea was with her at bed time, she asked, “why didn’t they show the Johnny pictures during church?” Lea explained that the pictures they showed at the “special ceremony for Johnny” were for that ceremony only, and that they wouldn’t show them at church every time we were there. Lea told her she could see them again sometime on our computer, and Juliana said she would like that. She seems to connect going to church with Johnny. This morning, on the way home from church, she was crying and upset, and seemed subdued and quiet when I carried her in the house. It didn’t last long, but I think she gets sad being at church and remembering the funeral and all the things that she remembers about Johnny from that day.

A couple of days after that first time back in church, as I was holding her at bedtime and we were reading books, she started talking about Johnny. She wasn’t upset, we were just sharing some happy memories. It was time to say bedtime prayers, so I asked her if she wanted to say anything. She said, “Dear God, thank you for this day, thank you for mommy and daddy, and thank you for having Johnny in heaven and for fixing his heart. Amen.” When she says things like this it really melts my heart. She thinks about him all the time, and I know she misses him.

The next night, Lea was with Juliana at bedtime and they were sitting in the glider rocker in the dark, right before Lea placed her in her bed. Lea had finished her bedtime routine. They had a great time reading a few books, then told stories and sang some songs together. Everything was going well, there was laughter and fun earlier, now it was getting quiet. Juliana was in good spirits and calming down and getting quiet before bed. All of a sudden, in the dark stillness of the room, Juliana called out “Johnny!” in a loud voice filled with anguish. Lea asked what was wrong, and with distress in her voice, said, “I want to hold Johnny!” Lea told her that she did too, and that she missed him, but he was in heaven so they couldn’t hold him. Lea asked her if she remembered holding Johnny, and with a happier voice said, “I could hardly stand it…he was heavy!” Lea asked her if she remembered how wiggly he was and she started to cry her special cry for him. Lea encouraged her to cry as long as she wanted to and reassured her that she would hold her for awhile. Juliana cried for awhile and then told Lea she was ready to go in her bed. Juliana didn’t hold Johnny that often but those were precious times for us when she did, and we are thankful to have some good pictures of her holding Johnny. We really miss seeing them together. It’s interesting that she remembered how heavy he was for her to hold.

The left sliding door on the van might always be called “Johnny’s door”. When we open it up, and she’s in the van, she will ask, “why are you opening Johnny’s door” or just tell us, “that’s Johnny’s door.” To her, it’s very logical. Johnny isn’t here but it’s still his door, and probably always will be. It’s what we call the left sliding door on the van.

A few days ago Lea brought her to a park and Juliana saw a mom with a baby in a stroller. The mom was trying to get her baby to go to sleep. Juliana pointed it out to Lea and then turned with a sad expression on her face and said, “Look at that blanket.” Lea could tell right away that it was hard for her to see that mom with a baby, and that she was thinking about Johnny. Juliana started sadly walking away with a little shrug of her shoulders like she does sometimes. Lea and Juliana soon left the park and on the way back to the van, Juliana started to cry her special cry for Johnny. Lea asked her why she was sad, and in that sad, distressed voice, she just said, “Johnny” and kept crying. They stopped at a bench, and Lea offered to hold her and comfort her, but she didn’t want to be held. She kept crying a little more then stopped and they walked to the van and went home. Just like with us, out of nowhere, when she least expects it, she feels sorrow and loss, triggered by some event or circumstance that brings back a lot of emotion about Johnny. It happens to us everyday and it happens to Juliana, too.

And so things go with Juliana. I could write countless more examples of how she talks about him, how she cries for him, and how she tells us that she misses him. Overall, even though it is difficult, we are more confident every day that Juliana will be okay through this. She talks about him often, and that’s a positive sign she is on the right track. We are fully committed to do what we need to do to help her through this stage of her life, and to get help when we need it. The Child Life staff at the hospital will always be a great resource for us to ask questions and provide reassurance when we need it. Some days she may be doing better than anybody else in the house, which is okay and probably the way we would want it. She has things neatly organized in her mind now of what happened, and what it all means. And although she misses Johnny, and I know she does, sometimes very much, she is working through it. The Child Life specialists that work with little kids going through these situations with lost siblings told us long ago how important it would be to help her organize her thoughts about this, and it appears she has done this. In her world, it’s all very simple:

Johnny had something broken in his heart.
He went in the hospital for surgery to fix it.
He was going to be in the hospital for a little while.
The doctors tried to fix his heart, but they couldn’t do it, so Johnny died.
The doctors tried really hard, but couldn’t fix it.
Mommy and Daddy couldn’t fix it either, even though Daddy can always fix things around the house when I break them.
Sometimes things that are broken just can’t be fixed, no matter how hard everyone tries.
Mommy and Daddy are sad about Johnny and they miss him.
I miss him, too, and I’m also sad because he’s gone.
We can hold a flower to think about him.
We can light a candle to remember that he is now with God in heaven.
Heaven is a really happy place and people don’t come back from there.
That’s okay because it’s a really happy place and Johnny is really happy there.
We have pictures of him around the house to remember him.
We like to have some of his things around to remember happy times with him.
We are slowly putting some of these things away that we don’t need anymore.
Some things we might leave out a long time.
My heart isn’t broken, it’s healthy, and doesn’t need to be fixed.
Mommy and Daddy also have a good heart.
Mommy and Daddy miss Johnny, and that makes them sad, but they are really happy they have me. They are happy that I am still here with them.
And I am really happy that Mommy and Daddy are here with me.
We can be really happy we have each other, even though we are sad Johnny is gone.

For Juliana, that’s the complete picture. What she really doesn’t grasp at all is the sense of loss of the future we thought we had with Johnny, and that’s probably a good thing because it’s a central part of our grief. She’s got everything organized, and that alone is reassuring to her, and to us. She doesn’t need to know or understand much more, at least not now. She will probably ask more in the future, when she’s older, and we will cross that bridge together when we come to it. I expect at some point when she becomes more aware of families with siblings, and how significant that is, we will pass through another difficult time where she will want a brother or sister, and realize she had one, and now he’s gone. We are all forever changed by Johnny and these events, including Juliana. There just isn’t a neat and tidy conclusion that wraps things up so we don’t need to revisit the feelings, the loss, and the reality of what has happened.

So as a family, we move forward, one day at a time, talking with Juliana about things daily, sharing our thoughts, our memories, and sadness. And we talk about our happiness that we have each other, that God is with us, and that we will be okay, which I think we will. Thank you for your continued thoughts and prayers for us. These days continue to be very difficult for us but we stand amazed at the community of family and friends that continue to offer so much support to us. You help to lift our spirits, you really do.

Holding Johnny

2008-09-19T13:51:00.003-05:00

I had the day off today, so this morning I went on a long run. I drove over to Minneapolis and ran a route that isn't very far from Children's Hospital. I would occasionally take a break from hospital life with Johnny and head out for a run on the same route. Kind of a reset of the mind for me. It always helped, and still does. Then I would head back to the hospital, feeling stronger, more confident about how Johnny was doing, almost always with a better perspective. For a good part of the run this morning, my thoughts were on Johnny, as they often are. Today is September 19th. It's one month from the day that I carried him into the hospital for his surgery, and later that morning gently set him down on the hospital bed, releasing him for the last time. We held him those last few hours before he died, but it was a far different situation from August 19th. Back on August 19th, he wasn't connected to anything. I remember he was wiggling, he was looking at me, and making sounds, full of life and energy.

I want to remember everything from that morning, every little detail, everything Johnny did, everything I felt. But I know I will forget far more then I remember, and that's hard to come to terms with. I am already forgetting things. I can remember that it was really nice to hold him, and that he was calm and easy to comfort that morning, but I can't remember exactly what it was like to feel his weight in my hands and arms, against me, as I held him. How we wish we could hold him again for a few minutes, just to remember and experience those feelings again.

We left the house at about 5:45 am that morning. I drove Johnny down to the hospital and Lea stayed back at the house to get Juliana off to pre-school before she would join me later. She was up early with Johnny to help get him ready. She held him close for a little while, before we placed him in his infant carrier for the trip to the hospital. She has told me since that time that she had the usual fleeting thought wondering if that would be the last time she would ever hold him. You can't help but think that sometimes when you have one of these kids with a challenged heart. You just don't know. You stay positive and remain strong, but it's always in the back of your mind. It was that morning for both of us.

By about 8:00 am that morning, I gently placed Johnny down on the hospital bed and the doctors gave him some medication so he would drift off to sleep, then I left so they could get him ready for surgery. About 2 hours, that was it that morning. I wish I could remember more. Lea arrived later and we were able to spend some time with him, but we couldn't hold him, and he was asleep.

For those 2 hours or so, I held him close most of the time. He hadn't had any nutrition since about midnight so I wanted to keep him nice and comfortable and relaxed so he wouldn't wake up, knowing he would be hungry. He occasionally stirred awake and looked around and looked at me. He would wiggle a little, maybe cry a little cry before I would get him back to sleep, but I remember he was really calm and comfortable and easy to hold and take care of that morning. At some point I remember he gave me a little smile, and I remember thinking how nice that was, like he was reassuring me that things would be okay. I remember patting his little backside a lot the way that he liked. It was one of my best comforting moves, and always worked. Not long after we arrived, I wrapped him in a hospital blanket, the way he liked to be wrapped. I remember the room seemed cool that morning. I remember someone had turned on the TV and the Olympics were on with the mute on. I can't remember the events, but I glanced at the TV screen now and then, and later turned it off not that interested in TV at the time. I held him standing most of the time, rocking back and forth a little, and when I needed a break I sat in one of those uncomfortable hospital recliner chairs. We happened to be in the same room that we were assigned when we arrived at Children's Hospital on Saturday, April 26th, 6 days after his birth. I remember holding Johnny and thinking about that and all that we had been through together in the past 4 months, since we had arrived at that room back in April.

And that's about it. Just a father holding his son, giving him comfort, keeping him calm, holding him close. Completely uneventful if not for the reality now that it was the last time we were together like that. Now it's an important and highly valued memory I'm trying to hold onto, and writing about it here will help.

Children are so precious. Hold them close when you can. Your own children, grandchildren, nieces, nephews, cousins, children of friends, however you know them, they are all blessings....I'll probably hold Juliana a little longer, with a little tighter grasp tonight before bed. Why not? What's the hurry to let her go? I've got time and I don't think she will mind. It will be good for both of us.

Juliana says Goodbye - Part I

2008-09-14T22:43:00.009-05:00

Johnny died peacefully at 3:24 pm on a Sunday afternoon, three weeks ago, with Lea and I holding on to each other and holding Johnny in our arms. Together we held him the last two and a half hours of his life. About two hours after he died, we had somehow collected ourselves enough to drive home and confront what seemed like the impossible task of telling our little Juliana what had happened. Certainly a difficult task and we both felt at the time that we had absolutely no strength remaining, but we knew we had to do it for Juliana. And it wasn’t enough just to tell her what happened, we knew that we had to bring her back to the hospital for a final goodbye. We didn’t have to ask for advice or counsel on how important this was. I knew we couldn’t just tell Juliana that he was gone without her seeing him one last time and saying goodbye. Doing so would forever be a conflicting issue for her, so that was never an option. She had to have a conclusion. A final goodbye to his physical presence, before she wouldn’t see him again.

Just a few days earlier, I had written about how difficult it was to bring her into the ICU, to see Johnny, when he was in such serious condition. Juliana had handled it really well, and it was a great benefit to her to have done that. We were making progress on explaining everything about Johnny's surgery in terms that a near three year old could understand. Looking back now I am at least thankful for the groundwork that was in place so we were able to understand what was important for Juliana to say goodbye to Johnny.

When Lea and I left Johnny's room and walked out, the heaviness of the situation weighed down on us. Words can’t describe the feelings, the thoughts, the emotion of going back into the world, after what we had experienced that afternoon. Our friend Tom was in the waiting area. We had no idea he would still be there. He asked if there was anything he could do. We asked if he could follow us home in one of our vehicles, since we had driven separately to the hospital what seemed like days ago but was early that same morning. Lea and I simply did not want to be apart at that moment.

Lea and I got in the van and started the drive home. I called my mom and dad to let them know we were on the way, and told them that when we arrived we would need some time alone with Juliana. It was a quiet ride home, as I held Lea’s hand. We talked a little about what we would say to Juliana, about how difficult it would be. We cried.

We arrived home and walked in and found Juliana happy and doing great, and glad to see us. She came running over and gave us a big hug as my parents, in tears, quietly turned and left us alone after giving us a hug. We greeted Juliana and spent a little time just talking about her day, how her friend (a teacher) Sandi from pre-school had come over to play with her, the things she had done, what was fun, what she had to eat for dinner. Then the time had come. I remember taking a deep breath. I told Juliana that “we needed to have a talk about some things.” She has learned that this means we need to talk about some serious or important things. Usually it’s something like how she needs to obey mommy better, or why it’s important to have good sleep, or recently how she was ready to move from the toddler room to the pre-school room.

We went over to the big green sofa in the living room and we all sat down, Lea and I with Juliana between us. She was standing on the cushions, like she always does, leaning back on the back rest, slowly moving back and forth between us, waiting for us to say something. We started to talk about how Johnny was in the hospital, how she had visited him, and how he had surgery. We talked about his heart, and why he had needed to go to the hospital. Then I told her that we were going to go to the hospital tonight, because “We need to say goodbye to Johnny one last time, because he isn’t going to come home with us like we wanted him to.” As expected and as I knew she would, she asked “Why isn’t Johnny coming home?”

We talked more about his surgery, about how the doctors were trying to fix his heart, and then I told her that they had tried really hard, but today, they couldn’t fix his heart, and he had died. We had talked a lot about the word we would use to describe what had happened, and thought it would be best to use the word that accurately describes it, Johnny had died, however hard it was to teach her that word that night. She has learned the meaning of the word “died” along with many other words that I so wish she didn’t have to know at her age.

I’ll never forget what she asked after I told her the doctors couldn’t fix his heart. “What are we going to do to fix it?” she asked. She asked without hesitation, and completely expecting that we would be able to tell her what we were going to do. I had to explain that there wasn’t anything we could do, the doctors had done everything they could, and mommy and daddy had done everything they could. There wasn’t anything anybody could do, so Johnny had died. Over the next several days, this was a common question, again and again. At one point, she asked me, “Daddy, you can fix things around the house when I break them, why couldn’t you fix Johnny’s heart?” Such is the simple mind of a young child. How I wish she didn't have to learn that sometimes some of the most important things that are broken can't be fixed.

We then talked about where Johnny went. We told her that he had died and that now he was in heaven. She asked, “After Johnny goes to heaven, when is he going to come back to our house?” We told him that he’s going to heaven and that’s a really happy place where you don’t come back because everyone likes it there. She asked a few more questions about why he wouldn’t come back, we tried our best to answer her. This was another central question for her in the coming days.

“Are you ready to go say goodbye to Johnny?” I asked. She quietly nodded, looking like she had become fully aware of the sorrow in the air and with all of us. Lea and I got up as she slid off the edge of the sofa and down to the floor and we walked to the door to get ready.

On the way to the hospital, we talked about the typical hospital routine and what we would do. She had developed an anticipation to go to the hospital, with all the fun children things there so we talked about some of the usual things. We talked about counting the monkeys on the wall, and how she wanted to ride in one of the red wagons. We told her we would do all of those things when we got there.

When we arrived, we had decided that Lea would stay out in the lobby with Juliana while I went in and briefly checked on Johnny and the nurse to make sure all was in order for Juliana’s last visit. I walked back to Johnny's room in the ICU. Our nurse, Samantha (Sam) was still there. She had been there about 12 hours at that point, since 7 am that morning. She had been crying with us much of the day, obviously deeply moved by what she was witnessing. How these nurses in the pediatric ICU do their work is really beyond me, they are a special group of care givers, and during a day like this when we lost our son, they become so much more then nurses to the families that they serve. They are truly special people.

I had also asked a woman from the Child Life group named Mindy to meet us there to observe the interaction with Juliana and give me some feedback after it was over. These Child Life specialists are unbelievable resources for parents going through these situations and we were glad to have the help. A woman named Judy had provided invaluable help to us prior to this day. Judy wasn't available but Mindy was working in the ER that evening. I had talked briefly with Mindy before we left for home to get Juliana. She showed me a couple of books she had brought for Juliana, kids books to help parents talk to their kids about their thoughts and emotions, about grief and loss, and the experience of losing a brother or sister. One of the books had the title, “I miss you”. She also gave me some other valuable resources to take home. Everything she provided proved to be highly valuable in the coming days and weeks.

Earlier that day, after Johnny had died, we held him for awhile and just cried. The tears flowed freely, we talked to him, we talked to each other. When we were ready, the nurses carefully disconnected him from the various monitors and things. We dressed him in a nice white and blue plaid outfit, with matching white shirt with blue trim underneath, and with a picture of Pooh bear on the front bib. We then wrapped him in a nice baby blue blanket. He looked so peaceful laying there on the bed. Much like he was sleeping peacefully.

Back in December, when things looked so bleak and the doctors didn’t give us any hope that he would go full term, thinking he would die in the womb, a woman at the clinic had asked us to consider if we would want time with our baby after he was delivered. She had told us that many parents dress their child and spend a few hours with the baby to hold him and to care for him just once. I remember thinking how tragic this would be, how difficult, and wondering if we would really want to do that. But now we had a complete understanding of the importance of having this as an option, and taking care of Johnny that last time, dressing him in nice clothes one last time, wrapping him up again, holding him just one more time, it all seemed so natural and important we didn’t think much about doing anything differently.

After talking with Mindy, and before I went to get Juliana, I went over to the bed to see Johnny again. He looked peaceful and calm. I got out some of the favorite toys and books that Juliana had packed in his hospital bag, not even one week before this day. She loved helping me pack up his hospital bag and was all excited about the things to include in it, knowing what he would like. I spread out a few things around Johnny, so that Juliana would see familiar items from the bag. His toy ring, a couple of books, his new little lion, a few other things. I adjusted his blanket around his body and his head, making sure he would look good to Juliana. I whispered to him that I needed him to do one more thing for us; I needed him to let Juliana come in and say goodbye. I gave him a kiss on the forehead. His skin was cold, but still soft. And then I left to get Juliana, talking with myself about how we needed to hold it together so this would work for Juliana.

Juliana was with Lea in the lobby, and I grabbed one of the red wagons that I had told her we would use to bring her into see Johnny. I looked at Lea to make sure she was ready, and I knew she was. We loaded up Juliana and we headed back into the ICU.

As we got close to Johnny’s room, I stopped and lifted Juliana into my arms. We quietly walked into the room and right away she saw Johnny, pointed, and said, “There’s Johnny!” We walked over to his bed, and I asked her if she wanted to sit down on the bed with him and she said yes, so I carefully set her down near where his feet were. She gave him a little pat on the blanket and softly said, “Hi, Johnny”. We talked about his little nose and ears, she always liked his little features. She wanted to see his hands and feet so I pulled back the blue blanket a little bit so she could see them and touch them.

We asked her if she liked the outfit he had on, and she said she liked the Pooh Bear on the front pocket of his outfit and she reached out to touch the Pooh Bear. She thought his mouth looked a little funny so we talked about that but I could tell that it didn’t really bother her. She had noticed that the color of his lips looked a little different.

Through the entire time, as she just sat there talking with us, and talking with Johnny, she was loving and tender with him, as she always was. It’s been three weeks and it’s still one of the hardest things about losing Johnny….not seeing our kids together. I hope one day I can somehow convey to Juliana how wonderful she was with him without making it a painful memory. Hopefully this record of everything will be significant for her to have.

She noticed the books that Mindy had brought, along with the other things that I had placed near Johnny. The books Mindy had brought were new so she was interested in them. I asked her if she wanted to read a book to Johnny, and she picked up the “I miss you” book. She carefully opened each page, and held it up “teacher style” so Johnny could see. She didn’t say any words, just held it up one page at a time, holding it briefly so Johnny could look at it, then brought it back down to turn the page.

After she finished with the book, we talked a little more about Johnny and then I asked her if she was ready to say goodbye. I picked her up and held her and leaned her in close to Johnny. She gave him a pat on the blanket again and said, “Goodbye, Johnny.” I asked her if she wanted to tell him that she loved him, and she leaned in again and said, “Goodbye, Johnny, I love you.” And with that, she had said her final goodbye.

During Juliana’s last visit, she had brought a picture from pre-school to hang on his wall. I brought her over to the picture and asked if she wanted to bring it home or leave it with him. It was a finger painting with bright green streaks made by the small fingers of a pre-schooler. Her name was written in red marker along the bottom edge of the paper, attached to the wall in portrait with hospital surgical tape. She said she wanted to bring it home, so we took it down and folded it neatly to take with us. We lingered a little while longer, and then we walked out of Johnny’s room. We were probably there about 15-20 minutes.

I placed her in the red wagon, and we walked down the hall and out of the ICU. When we were out, I told Lea that I would go back in and get some things. We had talked about how each of us would probably have one last goodbye ourselves, alone, before we brought Juliana home.

I headed back into the ICU, all alone this time. I could feel the emotion trying to surface, from holding it together for Juliana, just like the last time, when I had carried her into see Johnny a few days after his surgery. As I turned the corner into Johnny’s room, I broke down. Sam and Mindy were still there, but it really didn’t matter, I couldn't hold it in. I sat down on a stool. One of them brought me some Kleenex, another one of them had an arm around me. I sat there and wept, again, wondering how many tears are possible to shed in a single day. Eventually, it subsided, and I was able to talk to Sam and Mindy. I thanked Mindy for her help. She reassured me that things had gone really well with Juliana and she said some kind words about how great we were doing with her. I thanked Sam for all she had done for us that day. And then I had my own good bye with Johnny. I put my hand on him and said a few words, I told him how much I would miss him, and that we loved him, and just like Juliana, said one last good bye.

I headed out to the lobby to meet with Lea. I brought Juliana out to the van while Lea went in to say her last good bye to Johnny. Several minutes later I picked Lea up in the van. She climbed in, I grabbed her hand. Juliana was in the back seat. I shared on an earlier post how at that point, as we drove away, Juliana asked us to play the "Hallelujah" song. It was an unforgetable drive home from the hospital.

By the time we arrived home, it was getting late, so we helped Juliana get ready for bed, and decided it would be best for Lea to try and put her to bed for the night. Juliana was in a fairly good mood, a little tired, obviously not aware or processing much yet, but we knew it would come in it's own time, and we would be ready. While I was getting her pajamas on, she asked if she could call Johnny on the telephone. The night before, when I was home with her to put her to bed, she asked the same thing, and we called Lea at the hospital and asked her to hold a phone up to Johnny's ear. Through the phone the previous night, Juliana said, "Good night, Johnny, I love you." And that was all she needed to close out the day, a last connection with Johnny before going to sleep.

Thinking back now, I can't remember exactly what I said to her that night, but we didn't call Johnny on the phone. I think I said something about how he was in heaven and we couldn't call him on the phone and she didn't protest that response. We went on to talking about other things. Thinking back to that night, I think it would have been okay for her to make a pretend call to him, but at the same time, we have tried to be really cautious about talking about things in what would seem to be innocent terms, just for the sake of avoiding the more difficult reality of the situation. So far that seems to be serving us well, staying true to what is real even if more difficult to explain and process with Juliana.

That night, as Lea was with Juliana at bed time, she asked Lea, “Are you sad, Mommy?” Lea told her, “Yes, I’m sad because I miss Johnny.” Juliana replied back, “But I’m here, mommy….I’m here.” And so for the first time we began to understand how important it would be to work through the issue of making sure she knew that we were happy she was with us, even if we were sad that Johnny was gone. This would be another central issue for the coming days.

For us, at the time, the visit to the hospital was Juliana’s final goodbye to her little brother. But for Juliana, we quickly realized that her final goodbye has really extended out well beyond that visit. I’ll post more soon about the past few weeks and Juliana’s continuing process of saying goodbye to Johnny. My purpose in recording all this in detail is that someday she will find great value and comfort knowing how connected she was with Johnny, how in her own way she processed and grieved his loss, and how touched and moved we were to witness her love for him, even in the end, and after he was gone.

Johnny's Favorite Places

2008-09-07T19:57:00.008-05:00

Not long after we lost Johnny, Lea and I agreed that we wouldn't move, take apart, store away, throw away or change anything of Johnny's without talking about it first. Things that are important to one of us may not have the same meaning for the other person. The bottle rack still sits beside the kitchen sink, with bottles upside down on the holders. I could part with this, but Lea needs it there for a little while longer. The hospital bag I have had packed for Johnny ever since he was born, and used countless times during his first surgery and recovery and many doctor visits, has a place on a chair in our bedroom. It always bothered Lea that I stored it there, but I wanted it there, ready for a moments notice if I needed a quick exit to the hospital. That bag was with me the day he was born, and it was with me the day he died, and probably most every other visit to the hospital in between. The bag still sits there; I'm getting closer to unpacking it but not yet. It's full of papers of various sorts, medical forms, records of his medical history, numerous heart anatomy diagrams with notes and information, his weight gain chart. Lea has shown me some extra latitude to leave it there.

On Friday I stored away what we agreed would be the first big item to be taken down - Johnny's Pack 'n Play in the living room. It was a harder task to do then I thought it would be, and brought back a flood of memories. It was one of Johnny's favorite places. When he was up and alert, we would sometimes lay him in there, and he was always happy about it. We had the platform in the raised up position so it was only about 12 inches below the top edges. We originally had it in the center of the living room, but then moved it close to the large picture window overlooking the front yard. He would lay the same way each time, with his head tilted slightly to the side, looking out the window and up into the big silver maple tree in our front yard. On one occasion I tried to maneuver my face and eyes into a similar position so I could see what he was looking at. It was the tree, the leaves fluttering in the wind, the blue sky and clouds passing in the background through the openings between branches, an occasional squirrel running up the tree trunk and out onto a resting place on the first large branch. We would open the smaller windows on each side so a nice breeze would blow in. I always thought he liked that, since he was always a little hot anyway, and then he could hear the outside noises. It was the closest thing to being outside without actually being outside. I thought of it as his inside hammock.

Sometimes we would rig up this little play center in the Pack 'n Play with these little bright colored animals and rings hanging down so he could grab at them and see them move around. Jules always liked to pick what animals to hang for him, or what colored rings, or she would grab a stuffed animal and do kind of a puppet show like entertainment event for him.

Once it was taken down, I was surprised that we noticed the new void and empty space more often then the Pack 'n Play when it was still there. I can't walk through that part of the house now without noticing the larger view through the window, the empty space where it used to be. A reminder that something has changed. We have a lot of other things to take down and put away. The swing might be next, but I couldn't do it on Friday. Juliana and Johnny had their best interaction time when he was in that swing. She had his full attention, sitting in front of him, hanging different toys for him to play with and reading to him. And he really liked to be upright, able to reach for things and look around. The changing table will also be a tough one for me. At 2 am one morning I was changing his diaper, and upon changing it, he gave me his first real smile. I will never forget it. Suddenly awake and forgetting that all I wanted to do was go back to sleep, I spent the next 10 minutes quietly trying to tickle him and make faces at him to give me another smile. There would be other smiles on that changing table....another one of Johnny's favorite places.

And so it goes for us. Trying to move forward, however slowly it might seem. Knowing we need to move forward, for Juliana, for each other, but at the same time living with the tension that we don't want to forget anything about Johnny and the last four months, and every time we change something or put something away it feels like we are purposefully trying to place distance between us and his memories.

Lea received a call last night, I figured out from her side of the conversation that it was an alumni group from the university where she graduated. They must have asked her something about her availability or what she is up to these days, and she answered with, "I'm the mother of two small children, so I don't have a lot of spare time these days...." It just flowed out of her like a perfectly natural and true statement. I felt something catch in my throat as I heard it. She continued the conversation for some time after that, but I knew it was really hard for her that she had said that. I knew we would talk about it later, and we did. There were some tears, a comforting embrace, a conversation about Johnny and how hard this is.

The process continues. It's been two weeks since Johnny died. We are a family, a home, in transition. We are making progress. But it will take a long, long time, and that's okay.

Caring for Johnny....the last day

2008-09-05T22:46:00.005-05:00

It’s been a week since our ceremony for Johnny. I’ll share here in some detail our perspective and what it meant to us. There’s probably too much detail here but I wanted to capture our thoughts and feelings during the ceremony. I also write too often phrases such as, “I will never forget….” but I don’t know other words to use to convey this truth. As we planned and worked on the various parts of the service, it occurred to us several times that this would be the last significant thing we would ever do directly for Johnny. We were still his parents, right to the end, and wanted to honor him with a ceremony that would be a reflection of his life, and our love for him. And that is a primary reason why I want to remember everything about this service…our final goodbye to Johnny.

There was never much debate about whether we would have Johnny with us during the ceremony. For me, it just seemed important to have him in our presence, just a little while longer, and especially since the ceremony was about him. Not to mention the stark reality the presence of the casket would bring to the entire ceremony. And once that decision was made there was no debate about who would carry the casket in and out. It had to be me, with Lea right by my side. I wouldn’t want it any other way. Some suggested maybe this would be too much for me to do, given the emotions of the day. I looked at it the other way…..how could I stand by and let someone else do it? I knew the images of the day would be forever etched in my mind. The images needed to be of Lea and I directly caring for our son’s physical presence, one last time. Who else would carry Johnny? I couldn’t imagine it any other way.

The service was announced to begin at 10:00 am but actually began at 9:45 am with a pre-service produced and directed by our friend Tom. At 9:45 Lea and I departed a back room where we were in seclusion with close family and walked down some back hallways to the sanctuary. We entered a side door. Very few people were in the sanctuary, no one sitting, just a few of our friends taking care of last details. The doors to the lobby area were closed. I noticed some faces looking through the small window panes in the doors.

We were met at the far side of the stage by Amy, another friend who was our designated candle lighter. We proceed to light a single candle, the first of 127 candles, all lined up in a row along a beautifully decorated table behind the pulpit. We then returned to the family gathering room, through the same back exit and hallway through which we had entered.

127 candles….one for each day of Johnny’s life. The candles, all white and in different crystal holders, were of various types and styles, representing the varied nature of Johnny’s days. For more on the beauty and symbolism of the pre-service, including photos, go to the following links:

For a description of the service with photos-->> http://xcerpts.wordpress.com/2008/09/03/a-ceremony/

For the photo gallery, go to thomaseickhoff.com and open the gallery titled “design - memorial service - Candles: 127″

At about 10:00 am, Jim, our funeral director, called our immediate family away to be seated in the sanctuary. Lea and I sat alone in the quiet, holding hands. Suddenly the room seemed way too big for us as a waiting room, too much space for a husband and wife trying to create some form of closeness during a difficult time. We looked at each other, aware of the reality and depth of the moment upon us. Today we would lay our four month old son to rest. I gave Lea a reassuring touch on the hand and told her we would be okay, that we would get through this. That we were still parenting our Johnny, just a little while longer. She nodded in agreement. We talked softly about Johnny. Nothing in particular. Lea said something about his birth that I thought was funny. After a pause I told her I would use it during the ceremony, when I was going to share some thoughts about life with Johnny. We sat silently again, together, hand in hand, in shared disbelief over what we were doing today.

Jim came back to get us and said he was ready. We proceeded out to the lobby area. Sid, one of our pastors, was waiting there at the guest registry. He put his arm around Lea to provide some support; I suggested she wait there with Sid while I walked out with Jim to get Johnny out of the shiny, black, sedan waiting in front of the church.

I had seen the casket twice before, without Johnny in it, of course. The last time I had seen it I was at the funeral home and had asked our director to see it so I could figure out the best way to carry Johnny in and out of the sanctuary. I will not forget how he showed me that the bottom edges had small recessed handles. I couldn’t imagine carrying the casket by the handles. Johnny didn’t have handles…it would be so unnatural to carry him that way. I preferred to hold him as close as possible to how I used to do it, when we had him with us. His head on my left arm, both arms underneath him, supporting his weight, carried and held close to me.

I folded the special blankets we had chosen for the ceremony, to prepare them to lay across the casket. The first blanket was one of the large blankets we had used to wrap him up and swaddle him. Johnny was always most relaxed when he was wrapped up, which could be a problem on a hot day so we found these lighter-weight blankets that worked well. The one we brought to the ceremony had little sailboats and whales on it. Jules used to say, “He needs to be wrapped, get the boat blanket.” I folded it like we were going to swaddle him, and then laid it across the casket. The top blanket was a small, baby-blue blanket that my mom had knitted for him. It was small because it was only about half done. Mom gave it to me the day Johnny died, with tears in her eyes, telling me it was only half done and how sorry she was that she hadn’t finished it earlier. I thought it looked really nice, and the perfect size, lying across the boat blanket.

After I had the blankets in place, Jim helped get the casket into my arms. Immediately, I was aware of the heavier than expected weight of the casket, probably in part due to the emotion of the moment. I will never forget that feeling, standing, holding Johnny in my arms, the reality of the moment upon me. I turned and walked back into the church, and then, for the first time, met Lea’s eyes. Another moment I will never forget, seeing her, for the first time, seeing me, holding Johnny at his funeral. Her face portrayed a mother in anguish. I was also crying at this point. We moved together, Lea taking my arm, on my left side, and paused out in front of the doors to the sanctuary, ready to carry Johnny in. Being together gave us strength. Jim opened the doors, and we slowly began to move toward the front of the church, down the middle aisle.

Words can’t describe the sadness and experience of publicly carrying your son’s casket down the aisle of his funeral, your wife at your side. I wept openly as I carried him, like it was just the two of us. I made eye contact with no one. I don’t really remember even seeing anyone. We were lost in our own world of grief and sorrow, and much of the ceremony was this way. Earlier in the week we had talked about the ceremony and decided to take an approach to plan it the way we wanted, as if no one else was there but us. In the end, we were so honored that so many attended, and so thankful for the support we received, but at times during the ceremony, we were almost unaware of all those present. It wasn’t until the receiving line after the ceremony that we fully realized how many had come to support us during this time.

When we reached the front table, I gently set the casket down, and straightened the blankets. We lingered there for a brief moment, then took our seats in the front row, the left side of the sanctuary.

Sid opened the ceremony with some somber words of welcome and some brief thoughts about Johnny. He shared about his visit to us in the Minneapolis Children’s Hospital ICU just a few days earlier. He said a prayer for us, and for the ceremony.

After Sid was finished, a woman named Melody, from our adult congregation at church, beautifully sang two lullabies, Braham’s Lullaby and Barocha, to her own piano accompaniment. These songs were significant because they were the only two songs that Lea sang to Johnny. I could remember one night back in June when I had put Juliana to bed and was out doing email or something, and Lea was busy with Johnny getting him ready to go to sleep. She had him in the bedroom, and I could hear her singing these lullaby’s to Johnny over the baby monitor, in her soft, tender voice, as only a mother can do.

Melody completed her music, and it was my turn to speak. Some people had reservations about me speaking, wondering how I could do it. The program read “Reflections of Parents” and at one time we were both considering it. On Thursday Lea had read what I had drafted and commented that it was essentially the same thing as what she was writing. We discussed what we wanted to say throughout the day and in the end, decided that I would speak for both of us. My words are included in a previous post titled, “Reflections of Johnny’s Parents”. People were praying for me, and I got through it. It wasn’t easy, in fact it was one of the most difficult things I have ever done, on a day that was full of things that were the most difficult I have ever done. But I was determined to do it, to speak about Johnny, and share some thoughts about him. I knew that no one could convey the depth of emotion, love, and sorrow surrounding the moment except one of his parents. I was glad to shoulder the burden for both of us.

When I was finished, I remember feeling a unique completeness about it, almost like if I didn’t say another word for the rest of my life, it would be okay, like my purpose for being able to speak publicly was fulfilled. I remember carefully walking down the steps from the stage, feeling exhausted and concerned I might fall. I remember lingering briefly by Johnny, I recall placing a hand on the casket, I can’t quite remember. And then I sat down beside Lea.

A young man named Ricky began to sing “He will Carry Me”. I don’t remember the first half because the emotion from speaking and trying to hold it together overwhelmed me and I cried and sobbed in my seat, releasing emotion that I had held inside. For a time, Ricky led contemporary worship at our church, and I had asked him to sing for us. He brings a passion and reality to the music and lyrics that I wanted for this particular piece. If I could sing, I would want to sing like Ricky, which is why I wanted him to sing for us.

The song “He will Carry Me” was new to me. Others later told me that it was popular but it didn’t mean anything to me before the day that Johnny died. Maybe I had heard it on the radio but it had not made any impact, I don’t know. The night we came home from the hospital after we lost Johnny was a tough, tough night. I went out to the car to unload some things after we had Juliana asleep, and noticed that someone had left something on the front step. I went to look closer to see what it was and found some beautiful roses and a CD labeled, simply, “some songs”. I brought the flowers inside, placed the CD in a player in our bedroom, and began to listen. Track two from the CD was “He will Carry Me” by Mark Schultz. The lyrics were powerful to me and greatly ministered to me during such a difficult time. After about the third time through the song, I realized I had just found the first piece of music for the ceremony. I played the song for Lea, and she was equally moved.

I called, You hear me,
I’ve lost it all, and it’s more than I can bear.
I feel so empty.
You’re strong, I’m weary,
I’m holding on, but I feel like giving in,
But still, You’re with me.

(chorus)
But even though I’m walking through the valley of the shadow,
I will hold tight to the hand of Him, whose love will comfort me.
When our hope is gone, and I’ve been wounded in the battle,
He is all the strength I will ever need. He will carry me.

When Ricky was finished, two individuals from church spoke words of encouragement to us. Alice spoke first, about her visit to us in the hospital, and her observations of us going through this challenging time. Jay spoke next. Jay leads our adult congregation at church and has known us a long time. Both Jay and Alice greatly encouraged and supported us with their kind and sincere words, and we were thankful and honored to have both of them speak at the ceremony.

After Jay and Alice were finished, Melody and Ricky sang a beautiful duet of “My Redeemer is Faithful and True”. We wanted to include a familiar song like this at some point in the ceremony. This song seemed especially appropriate at this time. During the song, I noticed at one point that Lea had her hand up slightly in a sign of worship.

As I look back on the road I’ve traveled,
I see so many times He carried me through,
If there’s one thing that I know in my life,
My Redeemer is faithful and true.

My Redeemer is faithful and true,
Everything He has said, He will do,
Every morning, His mercies are new,
My Redeemer is faithful and true.

And in every situation,
He has proved His love for me,
When I lack the understanding,
He gives more grace to me.

My Redeemer is faithful and true,
Everything He has said, He will do,
Every morning, His mercies are new,
My Redeemer is faithful and true.

The song is as much a prayer and a hope for the future as it is a statement of where we are at now. I hope that in a year, five years, many years into the future, we can look back on these days and sign this song with the same commitment and confidence.

Following the song, Alice read scripture for us - Isaiah 40:11 and Mark 10:13-16.

Before we had children, Lea had a sense that God had given her the verse from Isaiah to cling to. And in Johnny’s last couple of days in the hospital, Lea had claimed this verse for him.

“He tends his flock like a shepherd:
He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young.”

Lea considers the verse one of her life verses for parenting. “….he gently leads those that have young.”

The passage from Mark is a well known passage where Jesus says, “Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these…”

Our senior pastor Rich then presented a meditation on two different thoughts. If God had spared Johnny back in December, when he was in the womb, why didn’t he do it a second time after this recent surgery? Both times people prayed in earnest. But the outcome was very different. The second theme was what happens to infants when they die and the biblical interpretation that God can have a relationship with babies, even as early as before they are born. Our pastor delivered a sincere and honest message and we so appreciated that it was parallel with our thoughts and feelings during this time. The “Why?” questions linger for us, and he didn’t present a list of answers, but instead offered the honest assessment that no one knows why God responded the way he did. I have had people tell me that it was refreshing to be in church and have the pastor openly admit that we don’t have all the answers. What we do know is that God is with us during these difficult times. We certainly do not have all the answers, and probably never will. That’s okay. We have enough answers and thoughts about what has happened to keep us going, maintain hope for the future, and stay true to what is important for our family.

Over the years, the next and final part of the ceremony will most likely be remembered as very significant and important, especially for Juliana. When we were planning the service, we knew how important it would be to include Juliana in the ceremony. The challenge was to include her in a significant part of the ceremony, but at the same time knowing that you can’t expect a toddler (she will be 3 in November) to sit still and be occupied for one hour. We debated the beginning or the end, and concluded that something at the end would be best, so she could walk out with us when I carried Johnny out to conclude the ceremony. As with every aspect of losing Johnny, we had to include Juliana in the process, to allow her to experience in a meaningful way what her mom and dad were experiencing. Not including her would alienate her and confuse her as to why mommy and daddy were so sad. Once again, bringing her in close to the pain and sorrow is always difficult to consider, but we are confident it must be done so she can grieve, and heal, with us.

Sid gave a brief background summary that I had prepared for him before we began the conclusion of the ceremony. He explained that after Johnny had died, after we had spent some meaningful time with him saying our goodbyes, we had to then go home and explain to Juliana that she had just lost her little brother….a conversation I will never forget. Afterwards, we then drove back down to the hospital as a family, for Juliana to say goodbye to Johnny one last time. I am working on a future post that documents the love and tenderness of Juliana that night, and the following days as she processes through the grief and loss of her little brother. I hope that one day it will be of great benefit to her.

Sid shared that we departed the hospital together with heavy hearts, loaded Juliana into her car seat and started to drive home. Soon after we were moving, Juliana said, “Let’s play the Hallelujah song.” We had the Newsboys “Adoration” CD in the van CD player and had been playing that song (Track 10, “Hallelujah”) the day before. I found the song, and hit the play button. I adjusted the rear view mirror to see Juliana’s face, and saw that she was smiling. She was calm, looked happy, and was listening to the music with a smile across her face. We didn’t say much on the way home, but the music played on. Lea and I in the front seats, tears falling from our eyes, as we listened to the lyrics, with Juliana smiling in the back seat, listening to her song. Our son had just died in our arms earlier that afternoon, and now the van was filled with Hallelujahs…..in some sense to us, it was very beautiful.

I’m looking up, holding out,
Pressing forward, without a doubt;
Longing for the things unseen,
Longing for the things I believe,
My true country.

We hope and wait, for the glorious day,
All tears will vanish, wiped away
On the saints this day already shines
On the saints this day already shines
It already shines.

We’ll be singing Hallelujah,
We’ll be signing Hallelujah,
At the top of our lungs, Hallelujah
To your Glory, Hallelujah,
Hallelujah, Hallelujah.

We’ll be singing Hallelujah,
We’ll be signing Hallelujah,
With all our breath, Hallelujah
To your Glory, Hallelujah,
Hallelujah, Hallelujah.

When Sid concluded the story, Lea and I departed the sanctuary to get Juliana. As the doors opened to the back of the sanctuary, there she was, all smiles, running to meet us, in her lovely little white sun dress with a printed pink rose pattern, two little pink barrettes, one above each ear holding back that long, fine baby hair of hers. It was wonderful to see her at that moment, and it greatly lifted our spirits. We paused to say hello, lift her into our arms, and to give her some hugs. Then, as a family, we reentered the sanctuary and headed down to the front, to Johnny’s casket.

Tom had designed and prepared a flower arrangement that symbolized our family. Four roses - two large roses that were opened, and two rose buds. We carefully helped Juliana lift one of the rose buds from the vase, and place it on the casket, tucked under the blue blanket, a symbol that Johnny was no longer with our family here on earth. Lea then held Juliana while we walked over to the last of the 127 candles lit to signify Johnny’s life. I carefully carried the final candle over to a large unlit candle near the casket. There I used the 127th candle to light the larger candle, as a symbol that Johnny’s life with us had ended, and he was now with God. I placed the 127th candle back in position on the table, and together, as a family, we sat down.

At that point, having symbolically said good-bye to Johnny, and placed him in God’s hands as a family, the Hallelujah song began, while photographs of our family’s life with Johnny were shown as a slide show on the large screens at the front of the sanctuary. Juliana immediately recognized the song and enjoyed looking at the photographs as each one was displayed. It was a very special time for our family, there with Juliana, listening to the music and seeing those photographs, each one so precious to us now. As a family we had said goodbye, and now we were remembering our 4 months with Johnny, captured on the photographs.

As the song ended, the photographs were replaced by the words from the chorus, and Melody and Ricky invited the congregation to stand and sing. We waited in front with Juliana, through a couple of lines of the chorus. I remember thinking how nice the congregation sounded, singing that chorus for us.

We’ll be singing Hallelujah,
We’ll be signing Hallelujah,
At the top of our lungs, Hallelujah
To your Glory, Hallelujah,
Hallelujah, Hallelujah.

We’ll be singing Hallelujah,
We’ll be signing Hallelujah,
With all our breath, Hallelujah
To your Glory, Hallelujah,
Hallelujah, Hallelujah.

I looked at Lea, she looked at me. I said, “Are you ready?” and she nodded. Lea held Juliana, and together we approached the casket. I carefully lifted Johnny into my arms, and with Lea on my right side, holding Juliana, we carried Johnny out to the sweet sound of the congregation continuing to sing the chorus of the Hallelujah song.

If you have read all of this or even a part of this long account, thank you for allowing us to share another chapter of Johnny’s story with you. The ceremony for Johnny was one of the most significant and meaningful things we have ever been a part of. We wanted to honor Johnny, give thanks for his life, however brief it was, and share with others that he had great value to us and a tremendous impact on us that will not be forgotten. We also wanted to demonstrate our commitment that although we have more questions than answers, we will remain steadfast in our faith through this. There were countless people that helped make this a reality for us, and for all the help, we will be forever grateful. The ceremony was a time of healing for us, more so than I could have imagined. And for that we are also very grateful.

Later in the afternoon that day, our families and some friends gathered at the cemetery for a burial service. I will share some thoughts on this experience at a later time.

I was with a trusted friend this morning that has known me for a long time. We were talking about everything that has happened to us, about our family, our loss, Johnny, and what we are doing to try and move forward. I told him that with each passing day I am more convinced that Johnny may have taught me more about life, love, joy, sorrow, what is important, and a multitude of other things in his brief four months then what I had learned in my entire life before I knew him. I miss him dearly, but his positive influence on me and our family continues....

The Race

2008-08-31T20:10:00.003-05:00

Two months ago I registered for a triathlon. When I sent my form in, I knew there was some risk with the date. Johnny’s surgery would most likely be in August sometime. What if his surgery was near the race date? What if he was still in the hospital? We learned a long time ago that predicting upcoming schedules is next to impossible. So I sent it in. I had wanted to do this race for the past couple of years and it seemed like it might work out. I decided to take the chance…..life is full of far greater risk anyway, so what if I’m out $55, it might work out.

When Johnny’s surgery was scheduled for August 19, I thought - this might work. There’s a good chance we could have him home several days before race day. We know some people who have a son that had virtually the identical surgery early in July. Their son was home in about 8 days.

After we lost Johnny, the race was the last thing on my mind. All energy, all focus, was directed toward the funeral, toward grieving, toward putting one foot in front of the other to function, caring for our daughter, and do the things that needed to be done. In some ways, this last week has felt like we were still parenting Johnny. It’s a struggle to be planning and involved in something as significant as a funeral and to be so overwhelmed with emotion and grief at the same time. But it was so important for us to honor Johnny, and to continue parenting him, right through the funeral. We were still has parents. If we were not an advocate for him, who would be? It’s always been this way, how could we stop now? Just a few more days…..then we could rest.

The funeral was such a healing time for us. Everything about it was special to us, with meaning and significance. It was a great reflection of our family and our wonderful time with Johnny. We had an army of people helping us and are again so humbled and grateful for so many stepping forward to lend a hand. Our church was phenomenal, and offered so much help and support. Different groups we are a part of separate from our church just rallied around the tasks to be done. It was an incredible outpouring that meant so much to our family. And those that attended offered heartfelt words of encouragement, comfort, and sorrow to us that mean a great deal to us right now. Our families were close by, sharing in our grief, also offering comfort and helping us. I’ll share more about the funeral on a future post.

The evening after the funeral, it occurred to me that I needed to make a decision about the race, scheduled for the next morning. In some ways, I was drawn to it. Running, especially, has been such a haven for me the past several months. Time alone, with my thoughts, with God, sorting out our struggles and fears. Everything has greater clarity after a good, long run. The simple action of moving forward as fast as you can under your own power….being in motion…it’s so therapeutic for me. I am most at home, most relaxed, when running. I do triathlons but really I’m a runner first, swimmer and biker second. So I think that’s why I was drawn to it, but at the same time, I was exhausted, had none of my gear ready, and really just didn’t have the competitive spirit for obvious reasons to be that interested. Later, it occurred to me that it might be good to just drive over and watch, maybe get my t-shirt. I don’t know, just get up early and get out of the house, away from everybody and everything, some time alone. I kind of left it that way, and set my alarm to see how things felt in the morning.

My alarm went off early, and I got up to go with the plan to just watch, maybe hang out a little, again just thinking I was getting out of the house to do something, anything, that resembled my old life, trying to separate from the events of the past week that have been nothing close to anything I ever did before we lost Johnny. I needed to be back early, anyway. We had family coming over and I wanted to see everyone. I thought of it as a test. Can I exist back in my old world, and blend in?

Right before I left the house, the thought occurred to me that maybe I could do something special as a sort of a tribute to Johnny. This particular race, for the rest of my life, will always be associated with losing Johnny, regardless of whether I was going to compete this year or not. I wanted to turn it into something meaningful. A plan began to evolve in my mind. I grabbed a few things from the basement and garage and headed down the driveway.

The morning was beautiful. Bright clear blue sky, sun shining. Maybe a little cool but the bright sun would warm things quickly. I hit the road with my gear and drove to the race staging area, only about 35 minutes from where we live. I arrived to the usual commotion of activity at the start of any race. Athletes everywhere running around nervously, getting ready for the event, unloading and setting up their gear. The race director was appealing to the competitors over the loudspeaker to see if anyone had an extra bike helmet. Apparently someone had forgotten their helmet. People were racking their bikes, pumping tires, hanging their gear, sitting and meditating. I reported to the registration area and picked up my t-shirt and race packet. Then I went to the body marking area and got marked. Number 359. Heat number 3. The kid doing the marking wished me luck. I picked up my race chip and strapped it to my ankle.

I set up some of my gear, and went through some of the usual rituals. I had some of the music from the funeral service playing on my iPod. My mind was on Johnny, on the events of the past week, on our loss, the funeral, the burial. I remembered images, thoughts, emotions. I was around hundreds of other athletes, but really insulated, moving around as if no one could see me, as I wanted to be on this morning. I didn’t talk to anyone, expect the guy doing the body markings.

At 7:15 they conducted a pre-race meeting. The usual, typical things…..stay safe, ride your bike on the right side of the road, watch a corner here or there, no biking in the transition area, swim heats will be released 3 minutes apart... I grabbed what I needed and headed down to the swim start. It was still cool, so everybody was jumping around nervously, trying to stay warm. More idle chatter among athletes. A guy a few feet away got his zipper stuck in his wet suit, and then someone helped him get it loose and zipped up.

Heat 1 went off on time. Six minutes until my heat. The Heat 1 swimmers headed out. I watched them go, arms flailing everywhere, legs kicking up white foam. It’s common to get kicked or hit during the swim leg because it’s a mass of humanity trying to swim in too small of an area with everybody zeroed in on a single buoy at the turn around point. It was a great spectacle to watch. I love swimming out in open water and do it as often as possible in the summer.

Soon, my heat was on deck. I headed down to the edge of the water. Looking out over the water, my mind was again on Johnny. On what has happened to us. The grief, the sorrow, the “Why?” question that will never be answered. Images forever burned in my mind that I will never forget. It was almost time to go....the director called for heat 3 to be on stand-by.

The race director began a countdown. “Three, Two, One…..” The start horn sounded! Our group took a running jump down the sand and into the water, down I went with them, and just as I had planned….I stopped…

The water was up just past my knees. I was about eight feet from the waters edge. I stood there, frozen, just watching the other swimmers from my heat head out into the blue water. As I watched them go, wanting to be with them, I thought of Johnny and his brief life of just over 4 months. 127 days. I thought of all our dreams for him that would not be realized. All the things we were looking forward to that would not happen. Learning to crawl, then walk. Later, it would be saying words - I wonder what his first word would have been? Then learning letters, numbers, going to school. All the books we would read together. The games we would play. The fun times with his big sister as he got older and tried to drive her crazy. Johnny’s life here on earth, over after just 4 months. My race, cut short. I stood there for a minute or so, watching the swimmers put distance between us.....until I cried. Which is just what I needed to do….and wanted to do. Tears have now become the preferred emotional attachment to Johnny. It used to be holding him close, or trying to make him smile, maybe watching him play with his favorite toy. Now it’s tears.

I eventually turned and walked back up the beach. I tore off my race chip and turned it in. They will probably record me as “DNF”, as in Did Not Finish. They asked if I was okay, I just told them that I ran into some trouble. I went back down to the beach and watched my heat come in from the water.

I originally had the thought that I would do the entire swim leg and then drop out, but sadly, I realized that doing the entire swim leg would be too much of the race and not representative of Johnny’s four months compared to a typical life time. The swim leg that ends in the transition area would be like getting to some significant place years out in a life like graduation from high school or college. As I watched the swimmers emerge from the water and run up the beach, I thought of Johnny and what he might have been like as a teenager, and then a young man. After a few more minutes, I gathered up my things, got in the car, and drove home. Going to the race, and doing what I did, was exactly what I needed to do. It felt right, and continued the healing process.

We have been told that when you lose a child, the grieving process takes a very long time, and takes on many forms. I don’t really believe we will ever be completely over this. I think this stays with you forever, but you learn to cope and get on with things, and we will, I believe that. Lea and I have talked about what we need now and we have agreed to give each other a lot of space to do what we need to do. And to say what we need to say. There is no right or wrong way to do this and we are committed to that for each other. In time, I think we will be okay. It's been a week since Johnny died. The healing continues……

Reflections from Johnny's Parents

2008-08-29T21:36:00.002-05:00

I shared the following thoughts at Johnny's funeral earlier today.

Lea and I decided that I (Dave) would speak for both of us today.

Tears are so good, they are so healing, and they are helping us so much right now.

Thank you all for coming today. It means a great deal to us that you would join us today to reinforce the value and significance of our son. His life may have been brief, but his influence was very significant, and we are forever changed by him - we will never forget him. Some of you may never forget him. Some of you may never forget today. And that just further validates how important he was to everyone, and especially to us.

Life with Johnny started almost exactly a year ago, when Lea told me the exciting news that she was pregnant. Many of you know that Johnny overcame great obstacles during Lea’s pregnancy. At a doctors appointment on December 21st the doctors gave him no chance to survive due to some complications that had been identified on his 20-week ultrasound two weeks earlier. It was a difficult Christmas, but many, many people prayed for us and held out hope for a miracle. And it happened. On January 3, another ultrasound revealed that the miracle we had hoped and prayed for had been granted…..Johnny’s condition had reversed. The doctors were amazed. I’ll never forget that day, they were more interested in Lea and her condition, we had to plead with the nurses to do an ultrasound so we could see our son maybe for the last time, and we saw right away that things had changed. The doctors entered the room, and confirmed what we had seen. Our baby was doing better. He might survive and go full term.

Two weeks later, on January 17, at another ultrasound appointment, he was diagnosed with a heart problem that would require a series of three surgeries after his birth. More challenges on the horizon for us and for Johnny. The roller-coaster ride continued. We tried to remain positive, kept praying for him and for us, and tried to learn about the series of surgeries he would have, that many kids come through okay and do quite well. I see Johnny’s cardiologist here today, with us for Johnny’s funeral. It’s amazing when you have one of these heart kids, I think our cardiologist knows Johnny better than anyone after Lea and I. The pediatric cardiologists, the heart surgeons, and the nurses that care for these kids are phenomenal people, and they are saving babies every day. I can’t thank them enough.

And then there was his birth on April 20. I will never forget that night and all the events surrounding his birth. We barely made it to the hospital. It was incredible. He fell into the hands of his dad and our doula, with no doctor present. My first moments with him were running down a hall with a nurse that had him wrapped in a blanket, searching frantically for a vacant room to get him stabilized. He was beautiful, but within a few hours we knew that his heart had not been healed. 11 days later, he had his first heart surgery.

Lea and I were talking before we came in today. Lea said, “You know, that birth, Johnny did that for you, because he knew you would think it was exciting.” And she’s right. I loved everything about it, being so involved, the drama. I will never forget it. Lea told me that his birth was my style, not hers, and it’s true. Thank you, Johnny. It is a beautiful memory.

Johnny recovered from that first surgery, and the homecoming was a joyous occasion. It was wonderful. We finally had our baby boy home with us. It was wonderful to settle into life at home with Johnny.

There has not been a day since that early diagnosis when Lea was pregnant when we have not wondered how long we would have Johnny with us. We often thought in terms of years. How many years? Five? Ten? When you have a baby with a challenged heart like Johnny’s, you tend to live this way at times. Although the original prognosis for his heart surgery outcomes was fairly positive, he always had us on the edge of our seats. Lea has often had thoughts that Johnathan was never really hers. To her, he has always been God’s child, more than her baby boy. She has had to hold him lightly these last four months, faced with his mortality every day. She cared for and loved him fiercely and passionately all the days he was with us. I have had to witness a mothers anguish far too many times, through his pregnancy, his first surgery…things I have witnessed have sometimes broken my heart. But each time Lea has emerged more determined to love her son as only a mother can do. I am so proud to have done this with Lea, to have shared in this journey with this woman. She is fantastic with our kids. She was with Johnny, she always will be with Juliana. I so much appreciate you, Lea. Thank you, I love you.

And now, here we are, at a place I never wanted to be at. Our little Johnny, lost last Sunday. I want you to know that Lea and I, we have complete peace that he is in a better place, in heaven, with no suffering, immeasurable joy, and a perfect heart. Our grief is for us, for Lea and I, for Juliana, for our loss, and how much we miss him. We miss him so much.

The question could be asked: why did his journey evolve this way….he made it through what many believe to be a miracle pregnancy, only to be lost to complications from heart surgery 4 months into his life. Some may even ask if the pain and difficulty we are going through now was worth it.

Our answer is an unequivocal “yes”. His four months was a great gift to us, and gave us the opportunity to know and understand him in ways we never would have been able to if he would have died in Lea’s womb. His sounds, his personality, the color of his hair, the color of his eyes, his long fingers and toes, his big feet, how he liked to be comforted and held, how he responded to his sister so beautifully……four brief months to know and love him. And in return, he provided so much to enrich our lives. He was at such a great place before this last surgery. He was smiling on a regular basis. He enjoyed playing with some of his toys. He had some great interactions with his big sister. The last couple of months were very special for us, having him home and with us, memories we will never forget.

I have no doubt that I will be a better man, a better husband, and a better father because I have been blessed to be Johnny’s dad for four months. He has given me so many gifts during our brief time together. Lea and I both believe he may have given more to us than we gave to him, even though he needed so much care like any newborn baby does.

Johnny gave me the gift of experiencing the joy and pride of being a father to a son. Those of you that know us know how much I love Juliana, but there is something different about having a son, and for four months, I experienced this. I loved it. He allowed us to experience all the awe and wonder of holding a little baby again for a second time. He gave us the gift of the simple pleasure of holding your sleeping baby in your arms while they drift off to sleep. And he brought out a personality and tenderness in our little Juliana that would not have blossomed any other way – for four months, she was a wonderful big sister. We never could have imagined how much we would have enjoyed seeing our children together. And now this is a central part of our loss. Juliana, in her own special way, grieves with us. She woke up at 5:00 am this morning, crying, sobbing. She couldn’t tell us why…we know why. Lea held her, comforted her. We are navigating this path with her, helping her grieve as she needs to, and we know we will get through this, together.

Our thoughts, perspective, and relationship with God have been amplified to degrees we never thought possible through this experience. We seem to have more questions then answers these days. We have experienced anger and frustration with God as never before, and at the same time we have experienced periods of calmness in the storm that can only be explained as God walking with us, giving us the strength to face the adversity and difficult circumstance we are in, that in the past we would have thought unbearable. Still more questions than answers right now, but we continue to ask the questions, maintaining a dialogue with God, and we believe that’s what is important. We have not abandoned God, he has not abandoned us. We continue to talk about this with Him.

Many have followed our story on our family blog. Those that know me know I would be the last person to share so much of our story in such a public format. But way back in December, between Christmas and New Years, when things looked so grim for us, I believe I had a directive of sorts from God to begin a record of our journey. I was on a long run on a cold winter day, sorting out my thoughts, grieving over what was happening to our baby, when I had a strong and clear thought about Johnny. The message was two-fold – there are many chapters left to our story, and his story needs to be told. From this, the blog began. And now that Johnny is gone, every word, every thought, is so precious to us. We are so thankful for this record of him and our family’s journey these past several months. I am so thankful for that day, that run, those thoughts, that I credit to God.

Johnny was with us here just over four months. 127 days as the candles behind me signify. He made the most of his days, and greatly enriched the lives of his mother and father, his big sister, his extended family, and many, many others. Now we’ve got to pick up the pieces, and it’s our turn to decide what we will do with the rest of our days.

Johnny, we love you so much. We will miss you so much. Thank you so much for the gifts you gave us and the lessons you taught us. You are an amazing little baby. We miss you dearly, and we will never forget you. Compared to an eternity, our lives will be as brief as yours was. We hope to see you soon.

Arrangements for Johnny

2008-08-26T17:11:00.008-05:00

Funeral arrangements for Johnny have been made. Here is the schedule:

Friday, August 29, 2008

10:00 am - Funeral Service
Calvary Church, Roseville
2120 Lexington Avenue North
Roseville, MN 55113
Phone: (651) 487-2855

A lunch will be served at the church after the service, beginning around 11:00 am.

12:45 pm - Interment at Roselawn Cemetery
803 West Larpenteur Avenue
Roseville, MN 55113

We have realized in the past 48 hours how deeply connected some of you are to our story and to Johnny. Many are grieving with us. We debated some about this, but concluded to have the interment open to anyone that feels they need to attend in order to continue with the healing process. There will be a very brief message and a prayer by our pastor, and then we will say goodbye one last time.

I am working on setting up a memorial fund for those interested in making a donation. There is a great camp here in Minnesota for kids with challenged hearts like Johnny had. We had hoped that one day he would get to attend this camp. This is a fantastic event for these kids, and the program is supported by fundraising and donation. Kids only pay $25 to attend. Here is a link-->>http://www.campodayin.org/

Please designate donations with "in memory of Johnathan Nyberg" on the memo line of checks. You can also donate online by credit card at the above link.

Cards and correspondence can be mailed to the following if you do not have our home address:

Alice Johnson (for Johnny's parents)
Calvary Church
2120 Lexington Avenue North
Roseville, MN 55113

Thank you for all the tremendous and continuing support coming our way.

Broken Hearts

2008-08-25T13:05:00.002-05:00

The Lord is near to the brokenhearted, and saves those who are crushed in spirit.
- Psalm 34:18

Johnathan David Nyberg

"Johnny"

April 20, 2008 - August 24, 2008

The above picture was taken on August 16, 3 days before his surgery. A special thanks to Johnny's aunt, Megan Conrad, for the picture. Each picture is so precious to us now. We are getting by hour to hour and sustained by all the thoughts and prayers, encouragement, notes, and support from so many. Very difficult times for our family, sometimes the sorrow seems almost overwhelming, but we will get through this. Juliana is doing okay, and processing things right there with us, which is what she needs to be doing. I will post arrangement information here when we have plans finalized.

Day 6

2008-08-24T04:09:00.008-05:00

4:06 pm

Johnny's gone. We were able to hold him through his last couple of hours. Words can't describe what we are experiencing right now........please pray for us and for Juliana.

11:05 am - we are with Johnny and he is still with us. Some lab test and x-ray results came back and things are worse. We continue to hope and pray for another miracle for little Johnny. His condition remains too unstable to hold him, so we stay close by.....

8:55 am - I am sad to write things are continuing to go downhill. Some hard discussions with the doctors......they are setting us up with a private room.....we are both with Johnny and close by....we have asked to hold him......

8:28 am - the results of the echo showed that he has a potential blood flow problem that could be some clotting. They are going to treat this with an effusion into his blood to try and break down any clot that could have formed. Treating two problems - the possible clot and infection, with the hopes that treatment of both will resolve his issues and his blood pressure will stabilize at a normal level. This continues to be a critical time for Johnny, he is in a more critical situation right now then he was on Wednesday. Appreciate your prayers for us and for Johnny during this time.

7:21 am - they just gave Johnny the "last resort" drug that was discussed last Wednesday to try and get his blood pressure elevated. Several doctors consulting and gathering now. They are just finishing the echo cardiogram.

6:51 am - Had a meeting with the ICU doc, the next several hours through the morning will be a critical period for Johnny. They will be watching and waiting for his blood pressure and white blood cell count to improve. They have him on high doses of epinephrine but unlike last Wednesday, he isn't responding to this, further indication he has some kind of infection going on. His other vital signs are okay, his oxygen has come back a little. Primary issue is his blood pressure and the infection problem. The cardiologist on call also came by and expressed some concern. They are going to order an echo to rule out a heart function problem.

I'll try and update as often as I can but a lot going on here as far as consultations with his medical team. We appreciate all your thoughts and prayers, we know we are not alone in this, and know so many are praying for us and for Johnny.

6:10 am - They continue to battle the blood pressure drops. The ICU doc came by for a brief update. They think he has an infection. They are giving him antibiotics. Some lab work came back and his white blood cell count is up. The Intensivist called Johnny's surgeon on the phone, the conversation began with, "we're not doing so good over here." They will do lab work on a frequent basis to monitor progress with battling the infection to try and get things under control.
3:49 am - Lea and I were home trying to get some sleep. The phone rang at 3:49 am - the nurse was calling to update us.....Johnathan had taken a downward turn. His blood pressure was dropping again. They had to give him some transfusions of blood volume. His oxygen saturations were also falling. I'll update more when I am there.

Day 5

2008-08-23T07:29:00.010-05:00

New post "This guy we know...." is below this one.

10:00 pm - Some results came back from the chest x-ray. The right lung is about the same as this morning. According to the ICU doc, best case is that in a couple of days, the collapsed portion of the lung re-inflates on it's own as Johnny's condition improves. Worst case is there may have been some nerve damage during surgery that has resulted in a problem with the diapharm that would require a surgical repair. He didn't think this was the case, but couldn't rule it out. They are also watching closely for infection problems, but so far his white blood cell count is where it should be. So the respiratory treatments will continue on a regular basis and we will see what the next couple of days brings us. They will continue to try and reduce some of his medications and start to dial back some of his air/vent support.

8:50 pm - no results from the chest x-ray yet, things take a long time late in the day on weekends. Probably means nothing is worse if we don't have anything back yet. Johnny was showing signs of being more alert. He was trying to move his arms around a lot so we talked to the nurses about how he likes to be wrapped up to settle and sleep well. Somehow they were able to sort of swaddle him up loosely around his middle area and arms, it seems to help as he has been more peaceful this afternoon. They have been surprised at what a difference this has made to get him to relax and rest. The alternative would be increased dosages of addictive pain medications to get him to lie still.....let's see, more drugs or a nice soft blanket.....we were thankful to be able to intervene on Johnny's behalf.

We also brought Juliana by the hospital for another visit. The visit went about the same as last time for Juliana - it went well. She liked it that he still had her picture up on the wall. She patted him again and this time said, "I love you, Johnny" when I asked her if she had anything to say to him. Afterwards, all of us got something to eat for dinner, and then I dropped Lea off to stay with Johnny while I drove Jules home to go to bed. She wanted to go in with Lea to see Johnny. "I want to say good night to Johnny", she told us, sobbing. It was really too late for her to go in and see him. We talked about it on the way home, about how she misses him. Then I thought of an idea to try and talked to her about how we talk to each other on the phone when I am out of town traveling or at work, and I asked her if she wanted to tell Johnny good night over the phone. This seemed to perk her up. When we got inside I dialed up Lea down at the hospital and asked her to hold the phone up to Johnny's ear. I gave Jules the phone, and she said, "Good night, Johnny, I love you." After that, she was back to her usual self. She just needed some closure with Johnny for the day. During the bedtime routine, she said the following during prayer time: "I want Johnny to smile at me the next time we visit him. Amen."

I'll put up another update if we hear anything back on the chest x-ray, otherwise, no news is probably good news and a sign that things haven't changed significantly.

4:05 pm - they just finished taking a chest x-ray to see if there is any progress with Johnny's right lung. I'll report more after we have some results. The respiratory specialists were here this afternoon trying to get his lung in better shape.

10:15 am - The doctors came by to see Johnny. His morning chest x-ray revealed that the lower lobe of his right lung is collapsed. They are going to order the usual respiratory treatment to try and get his lung back on track. His left lung looks good. Now that his cardiac situation is more stable, the focus will be primarily on his lungs and breathing to try and get things on track to remove his vent. It will be awhile, he's still got a lot of fluid build-up in his chest and the lung collapse will set us back. The vent is pumping 100% oxygen and needs to be reduced down to around at least 50-60% O2 to slowly get him used to doing well on something closer to room air.

The lung and breathing problems need attention, but they are not as perilous as his cardiac situation a few days ago. He just needs to make steady and daily progress with his lung improvement over the next week. If you are able to keep praying for us, pray for his lungs to improve and his retained fluid to decrease. Those two things are his primary obstacles right now. Thank you.

7:29 am - Johnny had a quiet night. Nothing much new to report. We are thankful for the progress he is making. I'll update more after the doctors do their rounds.

This guy we know...

2008-08-23T06:10:00.004-05:00

“There’s this guy we know, a good friend, he has a blog and he has written some things about our story……” That’s usually how I begin to tell someone about our friend Tom. Tom has been with us in our story about Johnathan since the beginning, before our little guy was even born.

Some background about Tom - we have known him a long time, almost as long as Lea and I have been married, and that feels like a long time. He is a very talented guy, very gifted, and does exceptional work in his profession. He’s passionate about his work, but I don’t think that’s where he finds his true purpose and meaning. I don’t think I have ever seen a WWJD bracelet on his wrist, but that’s how he tries to live, doing what Jesus would do. He spends time trying to help people on drugs get their lives right, he spends time with people that have lost everything in a hurricane, helping them try and rebuild. He sits with people that are near death, listening, being there. He seems to gravitate to the messy, emotional, and complicated things of life. And then he writes about it.

He came over to the hospital late Wednesday night when things were looking grim for Johnny. If he would have called, we would have said we didn’t want any visitors. He didn’t call, he just came over. Somehow, they let him in here or he got in here, in the ICU, even though they are not supposed to do that without our permission. The nurse at the front desk called and said we had a visitor in the ICU and I knew it was Tom. He had been following everything closely based on his notes to us and his appeal to others to pray for our situation. I probably wasn’t updating the blog frequently enough so he just came over to see first hand what was going on. Again just jumping in to a difficult and emotional situation.

Tom has this network of people he knows, organized as a sort of global, blog-based prayer chain. These people pray and things happen, Tom has written about it on his blog. I would be very careful what I ask these people to pray for and make sure it is something I desired, like making Johnny well. Tom introduced his praying friends to Johnny back in December when things looked bleak and they joined up with everybody we know, and some people we didn’t know, praying for us and for Johnny. Here we are 8 months later with a 4 month old baby that many said wouldn’t make it to his birth. Johnny’s in a tough place right now, but he is still battling on, and seems to have turned a corner today.

I give thanks to God for moving in the last couple of days to turn things around for Johnny, responding to the prayers of so many. And a huge thanks to all those who have prayed for us, Tom’s group included. Many other people besides Tom have seemed to organize a virtual army of praying people for us out there, I know Tom isn't the only link between us and a prayer group that we will never meet. In the last several days I had notes back from people and I was copied on email prayer chain notifications of numerous people that had passed our story along to others, asking for prayer. For that, we are so grateful. We didn't ask people to do that, people just did it for us. It's an amazing thing.

Here is a link to the blog:
http://xcerpts.wordpress.com/

Here is a link to the section on his blog about our story:
http://xcerpts.wordpress.com/?page_id=423&preview=true

This link will take you to his account of his visit to see Johnny:
http://xcerpts.wordpress.com/2008/08/21/johnny-laz/

Thank you, Tom, and everyone, for being a part of our journey, and for your thoughts and prayers.

Day 4

2008-08-22T07:16:00.009-05:00

New post "Juliana visits Johnny in the ICU" is below this one.

11:06 pm - Last update. No significant changes. Everything steady. Hopeful for a very quiet night. Praise to God for the turn of events in the last 48 hours. We are, again, so humbled and thankful. Thanks for your prayers.

9:15 pm - About the same story from the ICU as far as Johnny's vital signs go. Everything looks steady and about the same as it has been most of the day. Another positive is they have removed the arterial line from his arm, this looks like a big IV thing strapped to his lower forearm. Another disconnection, nice to see it off of him. He is starting to look more like his normal size as his fluid retention problem subsides. Some continued concern about his oxygen saturation levels (mid 60's) but it's hard to know how much of this is related to all the congestion in his chest or something else. The hope is that this would improve as they try and clear him out before his vent tube is removed. Too soon to predict when this might be, he's got some things to work through before we can talk about a schedule for pulling out his vent.

Johnny has made some good progress today. We are very thankful to God for his healing touch on Johnny in the past couple of days and so much appreciate all of you and your words of encouragement, your thoughts and prayers for us. Thank you.

3:25 pm - Nothing much new, his docs came by, made a brief visit. Continuing to try and slowly reduce a few meds, watching vital signs which remain stable. Oxygen saturations are a little lower then the docs would like at this point but no immediate concern.

12:50 pm - Not much to report other than status quo, vital signs remain the same - everything looking good and steady, nothing exciting happening, doctors do not come by that often - we are glad to be ignored for awhile.

10:10 am - Things are progressing for Johnny. Thanks so much for your thoughts and prayers. We're beginning to think he has turned the corner we have been waiting for. He's got a long road ahead of him but we are encouraged more than we have been since he was out of surgery. His chest x-ray from this morning looked improved. He's lost a lot of the fluid retainage from the last couple of days, the output calculation showed that he was down about a pound from the past 24 hours which is great. He was all the way up to about 15 1/2 pounds for weight - when he was admitted he was about 13 1/2 pounds. This will turn into the most important thing for him.....losing all that fluid retention in his tissues, and so far he is doing a great job to try and expel things. His vital signs are good. HR is 165, BP is good, his oxygen saturations are up to the low 70% range. The surgeon came by and we are pleased to report he had his first two chest tubes removed - always a milestone to have that first "disconnection" of something. Lungs, breathing, the vent pressures, trying to clear fluid from his chest cavity - these will all become the most important things as long as his vital signs remain stable. I'll update more later but the updates may be a little less frequent because there may not be as much to report......we want a long, boring day with Johnny with small gains all along the way.

Forgot to mention on my last update, by the time Johnny had resolved his oxygen issues last night we were feeling better about things and decided to try and get some good sleep. We were both home and got some rest before heading back here this morning. Johnny did his part and kept things uneventful all night so we didn't miss much. All things considered, we are doing okay.

7:16 am - Good news, Johnny had a very boring and uneventful night. His BP remained steady. His oxygen levels climbed back slowly through the night to better levels. And his heart rate steadily dropped to a more normal range. He's now around the 160-170 bpm range which is about where he should be. The heart rate has been a major concern. He hasn't had a heart rate at this level since his surgery and everybody is relieved to see this. He's way down on his epinephrine dose (0.1) which is good because it shows he is maintaining his BP on his own. He is having good fluid output. He needs to show everybody he can maintain these good, steady vital signs through the day and into the evening and then we will all rest a little easier. The focus will continue on his lungs and breathing this morning. He continues to have some fluid build-up around his lungs and the vent pressure remains up fairly high. Now it's the long task of trying to get his fluids and weight back down to a normal level before we could consider getting him off the ventilator. I'll update more later after we meet with the doctors, but overall this is the best condition he has been in since his surgery. Thanks for all the thoughts and prayers to get us through the last few days. We would appreciate continued thoughts and prayers for our little guy as you are able.

Juliana visits Johnny in the ICU

2008-08-22T00:20:00.004-05:00

Jules arrived and had a brief visit with Johnny today at about 10:45 am. I think it went as well as it could have, but as I expected it was one of the hardest things I have had to do. The “holding it together” part was not easy, but I got through it, as did Lea. We are so thankful for all the help and guidance we have received here at the hospital to help Jules navigate through this situation.

Lea brought Jules here from home. I met them in the hallway and we spent some time having some fun here before the big visit. Jules really likes the hospital, they do a great job making it kid friendly with toy animals everywhere, bright colors, play areas, and all kinds of fun things to do. I pulled her around in a wagon for awhile. She played with some of the same things that she liked when we visited Johnny back in May.

After she was comfortable with everything, we prepared her to see Johnny. I showed her a picture first of Johnny on his hospital bed and talked to her about how he would be “breathing through a straw, just like how she drinks juice.” We had suggested to her that she should bring him a picture, so she decided to bring him the finger painting she made at pre-school yesterday. Lea stayed with her while I went back to Johnny to get him ready. The nurse and I covered him with a fun and colorful kids blanket and I laid out some toys, books, and animals (Johnny’s Lion) that she had packed for him in his “hospital bag”.

I carried Jules in and she seemed fine seeing him. Kids just don’t understand the gravity of the situation, which is good, and she focused on what was familiar….her little brother – not all the monitors, tubes, equipment, etc. all over the place. She talked about his “straw” – “it’s white”, she said. I leaned her in close and she waved her little hand in front of him and said, “Hi, Johnny” in her soft voice. She touched his blanket and said, “his blanket is nice and soft.” I asked her if she wanted to say anything to Johnny. She said, “I see his little nose” while she was pointing at him. We asked her if she wanted to give him the picture she made and she held it out in front of him, even though he was asleep. I told her I was sure he liked it and asked if she wanted to hang it on the wall for him. We attached it on the wall with surgical tape, right where she told us to hang it. We talked about how he was sleeping, and that he looked comfortable. The visit was quick, probably about 5 minutes, but it was enough to accomplish what we wanted to with Juliana. She needed to see where he was and know that he was safe. I carried her the entire time. I was watching the temp monitor and Johnny was starting to get elevated temps under the blanket so we had to cut it short. We told Jules that we thought Johnny was really glad to have her visit and told her it was time to say good-bye. I leaned her in close again and she gently patted him with her little hand and then gave him a little wave in front of his face, and said, “Bye, Johnny.”

Afterwards, we spent some more time playing around the hospital again, and then it was time for Lea to bring her home. Jules didn’t want to go at first, she wanted to play some more but we told her it was time to go home and have lunch with Grandma and Grandpa and then she was on board with the plan.

Lea and Jules headed to the van to drive home, I turned and went the other way and almost immediately broke down. Randy, a good friend of ours, had arrived to visit....I walked down the hall with Randy, turned the corner, and ducked into the chapel. The tears flowed freely for awhile. I knew they would after Juliana left. Probably as much for the close call on Tuesday with Johnathan as the experience with Juliana. I cried for our family and what we are going through, for Lea seeing and experiencing things a mother should never have to go through with her baby, for Jules, for me, and of course for Johnny. I wished Randy wasn’t with me to see it, but at the same time was glad he was there. It was good to let go of some emotion...tears can be a blessing at a time like this.

There is something about having Jules go through this that is especially hard for me. Bringing her to be with Johnny is bringing her right into close quarters with all the emotions and difficulties of the situation. It has to be done so she can process things with us. Lea and I are adults, it’s really tough but we understand life can be difficult, you have to work through the hard times, lean on each other and your faith, etc. Jules is 2 ½ - I don’t want her to learn life’s hard lessons yet, at least not lessons that are this difficult. She will learn someday, she has to really, it’s all part of becoming an adult but I hope it’s gradually and gently and as she is ready. No 2 ½ year old should need to cope with having a little brother or sister in critical condition at the hospital. But it happens here everyday with many, many families. She did great with the visit, and is doing really well with the situation so far but it’s still hard. Lea told me later that on the way home, she told her, “I want to go back to the hospital and see Johnny again.” She got a little upset about it. We have reassured her there will be other visits. Even though Johnny is so little, they are really quite the pair and are so fond of each other. We really miss seeing them together.

Thanks for your prayers for Juliana. Wednesday night we couldn’t get home to have dinner and do the bedtime routine and she did great having my mom and dad do everything and then had a great night of sleep. I attribute this and the success of today’s visit to the loving hands of God being upon her and giving her comfort during this challenging time….a direct answer to people praying for her and our family. So far she is doing so much better this time around compared with Johnny’s birth and the first days of his hospital stay. This encourages us and makes the situation a little easier. Thank you.

Day 3

2008-08-21T00:58:00.010-05:00

11:29 pm - they gave him the transfusion and that seems to have his oxygen levels on a slow increase upward. Other vital signs are okay, although his blood pressure increased slightly but they aren't that concerned as it could be due to the extra volume. His heart rate has also slowly decreased down to the 180 -190 range, the lowest it has been post surgery. Hopefully he is settling in for a quiet night. Just a few hours can make a big difference. 3 hours ago the doctors are all conferencing about what to do because nothing seems to be making sense. Now they have left the hospital and Johnny appears somewhat stable. Praying for a boring night. I'll update again in the morning, going to try and get some sleep.

10:47 pm - ups and downs continue in the ICU. The last hour or so Johnny's oxygen levels have come back up to at least more tolerable levels in the high 50% range....the doctors can't make any real correlation with what happened to what they were doing but at any rate they are a little more comfortable with his situation. Johnny certainly seems to have a flair for the dramatic. They delayed the transfusion to see what might happen and here comes Johnny with higher levels on his own, but the thought is to start the transfusion anyway to try and get him a little higher through the night and then work on the issue again in the morning. The good news - his surgeon and cardiologist have been here all day and into the evening and after this latest turn around they are confident enough about things that they are going home. I think some people out there were praying for him again these past couple of hours.....

9:05 pm - For the last couple of hours, Johnny's oxygen saturation levels have dropped off and remained too low creating some new concerns. Like last night with his blood pressure, the doctors are trying some different things and he doesn't seem to be responding well. This is the new and immediate serious problem. They are going to try and give him a transfusion into his blood stream to improve his oxygen levels. Just like last night the doctors are all still here, trying things without seeing the results they want, at least not yet. Pray for his oxygen saturation levels to increase to better levels without any drastic changes to his blood pressure and heart rate. Looks like we could be in for another long night with our little guy. Things were looking a little better, but now I'm sorry to report they have turned downward again. They have increased his vent air pressure to about as maximum a flow rate as they can. Johnny may need to just battle through this. I'll update again later, thanks for your thoughts and prayers, looks like Johnny continues to need all the help from above he can get.

6:15 pm - Blood pressure has remained stable now for about 8 hours....this is encouraging. The hope is he is stabilizing and can remain this way for a long period of time. A good outcome for him in the next several hours would be to make it through the night and into the morning with his BP stable and not needing a lot of medication adjustments. He continues to have good fluid output. HR remains high. They are shifting some more focus to his lungs with more frequent chest x-rays to make sure he has enough air pressure from his vent to keep his lungs inflating well. He continues to have some fluid build-up in his chest that is stressing his lungs.

2:00 pm - another brief update, the last few hours Johnny's BP has remained fairly stable so we are thankful for that. He is discharging a lot of fluid which is also positive. His HR remains fairly high near 200 bpm. They will try and reduce some of his medications through the afternoon to see if he can maintain stable BP without such high dosages. We are somewhat encouraged that things are relatively quiet for him compared to yesterday afternoon. The visit with Jules went well, I'll report more on that later.

9:50 am - just a brief update, about the same story as before, primary concerns are his BP and heart rate, they are adjusting his meds to try and get him stable, right now his BP is better. It goes up, then it goes down. They adjust as needed and in the last couple of hours he seems to be responding to the different medications. The doctors will be watching him closely today. He is a little more alert and wiggles now and then, which is beneficial to him to maintain BP but at the same time it's hard to see him move and wonder if he is moving because he feels pain or if his muscles are just moving on their own like babies do.

We are bringing Juliana in for a very brief visit. It's important that she sees where he is to have a picture of him in her mind. She has been asking and talking about him. This is a delicate issue for us; Johnny doesn't look real good right now so we will talk her through some things before we bring her in. The specialists we have talked to about this have reassured us that if we do this right, she will be okay. It's important that we hold it together when we have her in here. Pray for us if you are able about this, I'll report back how it goes. We have been working with Juliana the past week to 10 days to prepare her for Johnny's surgery, so far things are going okay. She is so precious to us, we just want to protect her little spirit but at the same time involve her as we need to so she feels like a part of our family and this difficult time we are going through. Trying to balance caring for these two kids and the significantly different places they are at right now remains one of the most difficult challenges of this.

6:20 am - Johnathan made it through the night but he developed some other concerns after about 4 am. His blood pressure started to elevate and his heart rate climbed back up over 200 again. This was a very different problem compared to the earlier episode when his BP was too low and his docs couldn't find a med to increase it. His temp increased again, and a chest x-ray revealed that he has some compromised lobes on each lung that aren't functioning. They adjusted his ventilator settings to try and inflate his lungs better with each breath. The doctors will start to round soon and will try and adjust meds, and will try and figure out how to get Johnny to respond to the new set of problems of high BP and drainage from his chest cavity. He made it through the close call of last night, now it looks like he's got some other challenges facing him early today. I'll update more when the doctors figure out a plan. Thanks for your thoughts and prayers for him.

1:05 am - Johnny may be slowly emerging from his rough stretch. Too soon to say he has turned the corner but things are a little better for him. At 12:51 his heart rate finally dropped below 200 bpm for the first time in a very long time. His BP remains acceptable with some help from his meds. The Lasix did the job for him and he had some fairly good output. His oxygen levels have dropped so they are going to give him a transfusion of blood volume to try and improve things. His cardiologist just went home. It's a good sign when your main doc feels good enough about things to go home and get some sleep. I'm also going to try and crash for a few hours. Through the rest of the night, no news is good news. I'll update again in the morning.

Day 2

2008-08-20T08:34:00.009-05:00

11:55 pm - Not much new to report, heart rate high, BP responds to epinephrine, so at least we have a way to treat his low BP when it occurs. They gave him a dose of Lasix to try and burn off some fluid so we will see what happens and hopefully no negative effect on his BP. Based on notes back to us and calls, a HUGE number of prayers going on for our little guy....thank you for your involvement in this with us. We can't tell you how much it means to us that so many take time to pray and think of us during this time.

10:00 pm - Brief update, making a little positive progress, the epinephrine has kept his blood pressure up but when they reduced the dosage his blood pressure started to come back down. The nurse just told us that she may need to up the dosage again to keep his BP at good levels. It's important that they can reduce the meds as soon as possible and that he will sustain keeping his BP at a good level. Johnny's not there yet. The surgeon came by to take a look at things. His comment was, "we are better than we were an hour ago." Looks like we can delay the "last resort" drug for at least the next few hours. Hopefully we will not need it. Heart rate remains higher than anyone wants but the BP is the important vital sign at this point. Haven't turned the corner yet. Still watching him closely. We spend time with Johnny at the side of his bed, holding his hand or touching his shoulder, praying for him and trying to do what we can do in the way of comforting him.

8:00 pm - Sorry for the delay to update, there has been a lot going on here. There has not been a time with Johnathan that seemed so perilous since way back when he was in the womb, at about 22 weeks old. See "Our Story" in the right column under the photos if you want the background. Johnny's doctors remain concerned and we are right there with them. His heart rate is elevated to 230 beats per minute now. They have his BP raised to a better level but they had to give him drugs that function like adrenaline to make it happen. He has a complex set of conditions now that contradict each other as far as treatment goes. He has too much fluid retention in his chest cavity so they need to give him diuretics to pass it through. When they do this it tends to reduce his blood volume which decreases his BP. The heart rate is a big concern....his heart can't sustain this level of work. At some point if his BP keeps dropping there will not be much else they can try. The doctors have tried several things but he isn't responding very well. His body just isn't adjusting and getting on track after the surgery as they had hoped. We've had a few somber discussions with the doctors. There is one more thing left to try if needed - a medication that they don't like to use unless they are out of all other options, and the doctors have told us we might be getting close to that point.

It's hard to see Johnny struggling like this. He doesn't look so good. We've been through so much with our little guy, and he's been through so much adversity....but it's still hard to see him like this, and his situation so serious. We are hanging in there with him, leaning on each other, offering up prayers, and trying to remain hopeful. He needs to turn a corner soon. We are watching his vital signs and looking for a positive change. We are settling in for a long night. Juliana is home with my mom and dad, and it sounds like she is doing okay but we were hopeful at least one of us could get home to have dinner with her and put her to bed. Say a prayer for little Jules too if you are praying for us. This morning when she woke up I went in to get her out of bed and the first thing she said was, "I want Johnny to come home, I miss him."

I'll update more later tonight.

3:45 pm - Johnny has had a rough afternoon. At about 1 pm his blood pressure dropped again. They moved up the chest x-ray to get a picture of what was going on inside his chest. Now his right side is showing some distress. He rebounded a little about an hour later but then went downhill with more periods of low blood pressure. There is a lot of activity and doctor consultations around his situation right now. His low blood pressure is currently his biggest problem. The chest fluid and high HR are also problems. He also developed what looks like some purple bruising on the left side of his face near where the neck line is inserted - this has his doctors concerned. They are working on him now to insert two chest tubes, one on each side to try and relieve the distress in his chest cavity. The doctors aren't sure what to make of the high heart rate and low blood pressure problem, so that is also a concern. If they know what the problem is, they can typically do something. In this case, they aren't sure, so they are trying a number of things but not sure what will work.

Of all the things he has been through since his birth, this is the worst it has been for him. The doctors are concerned. So please say a prayer for him if you are able. We are praying he will pull out of it, he needs to turn a corner sometime soon. He's been out of surgery about 24 hours now. He is 4 months old today.

11:15 am - Quick update, his BP is a little more stable, but his HR has increased again to be consistently well above 200 bpm, so they are trying to figure out a plan to bring his HR down. His surgeon ordered another chest x-ray at 3 pm to review the status of the effusion on his left side, if the same or worse, they will consider adding a chest tube to provide some drainage. They completed an Echocardiogram earlier this morning and his heart function is good with everything working as it should after his surgery, so this is positive news for him.

8:34 am - The doctors have rounded with several consultations on Johnny and his status. He made it through the night with some improvements on a few fronts, other things have developed they are working on. His BP continues to be all over the map but most of the time lower then where they want it, this morning they tried giving him some Albumen to increase his blood volume and this seemed to help increase his pressures. His fever has diminished so this is an improvement for him. His left lung showed some effusion (fluid build-up) that they are concerned about and will continue to monitor. Today will be a continuous adjustment of several things trying to get him balanced between good blood pressure and blood volume, reduced fluid build-up, and monitoring his pain medication to keep him comfortable.

Surgery

2008-08-19T06:44:00.012-05:00

8:55 pm - Johnny has two nurses actively caring for him. Constant adjustments and fine tuning of everything. His heart rate was way up for awhile but now is back down to 210 bpm. His blood pressure goes all over so they constantly try and adjust his meds to get things stabilized. His fever is a little better since they put him on ice but he's still running hot. It will go on like this all night, adjustments to try and get him stablized with vital signs at a stable level. He's a tough little guy. They have told me more than a few times that he must be a fiesty little boy. Every now and then he wiggles a little and fights against them despite being heavily sedated. I'm glad he's got that fighter spirit, my sense is he needs that right now. Thanks so much for your thoughts and prayers for us today. Many, many notes of encouragement received today...it means a lot. This is the last post for the night. I will update more tomorrow.

4:15 pm - we are back in the ICU with Johnny. They continue to work on his meds, drainage, stabilizing his vital signs, and monitoring his pain medications. He's in rough shape but nothing that unexpected after the type of surgery he has undergone. It's tough to see him like this and it's a flashback to when he had his BT Shunt back in May. But we are thankful we can be with him now that he is back in the ICU. It almost feels like we never left here. I keep reminding myself that we did have him home for awhile and by God's grace we will get him home again. Thanks for your prayers, Johnny needs them right now.

3:20 pm - Brief update, Johnny's cardiologist came out to visit with us and let us know his status. The surgery went more or less according to plan (more details later). They will move him to recovery and call us when we can see him. As with any major surgery like this, the next 24-48 hours will be critical for Johnny. His heart beat is very high right now, 200 beats per minute. He's running a fever of 103 F. They will be working to adjust his meds to try and get him calmed down and stabilized. He's under a lot of stress right now from the surgery. I'll report back after we have had a chance to see him.

2:40 pm - just received a call from the OR, they are closing Johnathan's chest and the surgeon will be out to brief us. I'll update when I have news.

2:00 pm - nothing to report other than no news. The original indication was that the surgery could take 4 hours so it might be awhile. Our cardiologist will probably come out and give us an update sometime before the surgery is entirely complete.

12:03 pm - call from the OR - the procedure has started.

11:25 am - The typical flurry of activity right before they need to wheel him away, around 11 o'clock with nurses gathered around, doing different checks and procedures, everything getting ready. We know it's close. Then they give us the word that it's time to start saying good-bye to Johnny. He's slightly awake now, but resting. He's moving a little, his eyes are partly open like he's in a really sleepy state. It looks like he is trying to cry out a little but he can't make any noise since the ventilator is in. I have one hand on his little arm, trying to comfort him and talk to him and say a few words of encouragement. A little tear falls out of his eye and runs down the side of his face. I wipe it away, and for the thousandth time I think that this is too much for a baby to go through.......need to focus on "we're saving his life"....at times like this, I try and focus on this to emphasize the positive. It's time to wheel him down the hallway, we follow along behind him, and then at the same last turn in the hall where we have been before, they tell us it's time for a final good-bye. We each lean in close, I tell him we love him, that he's in God's hands, to hang in there, and that we'll be here when he is out. Lea leans in and does the same. We give him one last kiss on his little head. Johnny goes one way, we go the other way and back to grab our things from the ICU and then head to the chapel to offer up some prayers for our little one. He truly is in God's hands. The waiting begins.....

10:35 am - Dr. Overman (surgeon) came by to review everything and have us sign the consent form. I will never get used to signing these consent forms for surgery. They go through the list of questions and statements. One is "You understand the options and alternatives for the procedure your child is having today." This really doesn't apply to us.....there are no options. If we don't do the surgery Johnny would slowly deteriorate, become weaker, and wouldn't make it beyond a few months. So we sign. The doctors are trying to save his life, and we are on board with the plan. No real surprises during the consultation with the surgeon; it's what we have been talking about for a few months, he's having a Bi-Directional Glenn with an Atrial Septectomy.

9:10 am - we are back with Johnathan, Lea arrived. Johnny is sleeping peacefully. Just a matter of waiting now for him to be called into surgery. All lab work results came back and everything looks really good. The surgeon will come out for a visit and to review the surgery and plan with us. Our cardiologist has been by to see us a few times. More later.

7:45 am - the Intensivist doc came by to get things rolling, Johnny needed some extra attention to get his IV going. Then it was time to connect his lines and get the ventalation system going. Yesterday they had told us that the process would be a little different this time around with the docs doing all the preliminary work before they wheel him away to the OR. At about 8:00 they gave me a few minutes with him before they needed to give him a mild sedative to put him to sleep. He was lying on his bed with the IV in so I got up close to him and told him today is the big day, I told him that I loved him, that we would stay close by, that many were praying for him, and then told him to "hang tough" through this, with better days ahead. I had one hand on his head, and another on his chest. I could feel his little heart beating away. He was comfortable, but a little vocal about everything, and looking at me, with his little arms up, gently wiggling back and forth. Then the doc sent a little medication through his IV and Johnny quickly and quietly drifted off to sleep. They asked me to wait out in the lobby, we should be able to see him again in about an hour and wait with him while he sleeps before his surgery.

6:15 am - I arrived at the hospital with Johnny, Lea stayed home to get Juliana off to pre-school before she joins me later. We walked into the ICU and were greeted by familiar faces that know us and Johnny by name......not a desirable situation to be so known so well at the ICU, but at the same time it was nice to be greeted by friendly people. We settled into one of the rooms and went through the usual check-in routine. I held him most of the time and he drifted in and out of sleepiness and alertness, looking at me and looking around the room.

Glenn Surgery is a "go"

2008-08-18T21:12:00.009-05:00

We were at the hospital all afternoon today doing some prep work and appointments with Johnny. Everything is on for tomorrow. Only change is we need to have him there earlier than we expected so they can connect him to an IV and he doesn't go as long without fluids prior to the surgery. The actual surgery is scheduled for 11:30 a.m. although they may take him from us earlier to get started on some prep work with some of the lines he will need.

We met with his cardiologist (Dr. Dummer, Mpls. Children's Heart Clinic) at 1:00 pm. Some debate about whether we should admit him this afternoon (!) because of a low oxygen saturation reading (when he was all worked up and irritated - 58% - learned a long time ago not to trust these readings) - I talked her into a retest (with Johnny relaxed and sleeping while I was holding him) and she agreed...it was "winner take all", he needed to be over 65% for a period of time or else we needed to admit him - Johnny came through......68-70% - far from ideal and an indication he needs the surgery, but about where we expected him to be and enough to keep him home with us tonight. We really appreciate how our cardiologist works with us on issues like this. She was supportive of us delaying the surgery until now and really listens to what we have to say, trusting us on things where there is a grey area and middle ground that we can all live in and also showing a lot of confidence in us that we know Johnny better than anybody, better then instruments and monitors and other doctors. I don't think we could ask for a more supportive and understanding partner to work with for Johnny's care. Johnny showed his appreciation at the appointment today by sporting the new shirt below.

How are we doing? We are doing okay and feel ready to cross this important milestone with Johnny. We know it will not be easy, but we sense that God is with us and we know so many are joining with us to pray for Johnny and our family - this lifts our spirits and we can truly feel the support of everyone lifting us up hour to hour as we get closer to tomorrow. What do you do when your 4-month old baby is about ready to have major open-heart surgery? It seems the answer that keeps coming to me is, "you can't do enough...." the last few days we have tried to hold him as much as we can, spend time with him, interact with him.....just give him as much positive experience and time with us as we can. He is asleep right now and I'm tempted to go wake him up to interact with him but he needs his rest for the big day tomorrow so we let him sleep.

The last two weeks have been great with him, he's showing some good development progress and now offers little smiles to us on a daily basis, he holds his head up for brief periods, he reaches for little toys he has and watches us move around the room, keeping an eye on us. We are so thankful for what has been the "extra" two weeks we have had with him beyond when his Glenn was originally scheduled (August 6).

So much is different this time compared to our last hospital stay with Johnny - some things are easier, some things are more difficult. One positive is that we feel much better prepared with Juliana and have been working with her to prepare her sweet little spirit and heart for what is coming. We let her pack his hospital bag tonight and she had a great time loading it with toys, animals, books, and other fun things that she thought Johnny would enjoy in the hospital. Before her bedtime, I carried her into see Johnny and to say good-bye to him. I had told her that he would be gone in the morning when she wakes up. She leaned over close to him and said, "Good night and good-bye, Johnny", and then she leaned over even closer and gave him a little kiss while he slept peacefully. I told her how nice that was and she said, "I gave him a kiss because I'm going to miss him when he's in the hospital." We said good night again and I carried her out and reminded her that we would go visit Johnny real soon. We will be watching Jules closely, talking to her and listening to her. I expect she will experience emotions she doesn't fully understand the next several days so it will be important for us to help her navigate through this time. I know she is really going to miss him, they are a great pair and Johnny responds so well to her that it will also be good for him to have her visit him in the hospital. He often calms very well when she is near by and loves to watch her and listen to her voice.

No rest for little Johnny, the Number and Alphabet drills continue through the weekend from teacher Juliana.

I'll update on Tuesday as things progress along. Thanks so much for so many prayers and positive thoughts for us, we are back on the hospital path again and so thankful for all the support from so many.

Surgery Rescheduled

2008-08-04T21:20:00.006-05:00

I'm thankful to report that after some consultations with the doctors, Johnny's surgery has been delayed a couple of weeks. His pre-op physical is now scheduled for August 18th, with the bi-directional Glenn (more info on Glenn Surgery HERE) scheduled for Tuesday, August 19th, one day short of 4 months old. We are comfortable with the plan....it would be nice to wait a little longer and I think he could make it another week or so before out-growing his shunt but there are scheduling conflicts the following week (one surgeon is out, all surgery is with two surgeons, one as a back-up) and my sense is that waiting until early September might be a little too long given his current growth rate.

Scheduling these surgeries is a tricky matter....nothing is ideal, the ideal would be that he didn't need surgery, but we know he does and it's the path we need to be on to sustain his life. The next best plan for us seems to be to have him doing fairly well up until his surgery so we walk in and have the surgery, keeping him home with us as long as possible and enjoying our time with him before what might be an extended hospital stay. I have often thought that it would be difficult to see him struggle towards the end and get admitted to the hospital and hooked up to oxygen those last several days prior to surgery, and then just be in a waiting mode....hopefully we have the optimal date set for Johnny. We are really going to make it a point to enjoy the next couple of weeks with him.

By Sunday he was more or less recovered from the cath, and he had a pretty good day. He was up with us off and on during the day, his energy level was close to back to normal, at least normal for him, and we had some nice time with him. We have learned not to take days with Johnny for granted, especially now with his next surgery looming before us. As it has always been, even back before he was born and he was in the womb, when the doctors didn't think he would make it, every day with Johnny is a blessing for us and our family, and we are thankful for that. Thankful for the little things...holding him, seeing Jules and Johnny together, rocking Johnny to sleep, watching his little facial expressions change. We will make the most of the next two weeks. Thanks for all the thoughts and prayers over the past week.....many said they were praying specifically that the surgery could be delayed. God answered that one as a "yes" and we are thankful for that.

Here are some pictures......Juliana is certainly doing her part to keep Johnny entertained....our dynamic duo together again.... My caption for Johnny on the next picture is, "Hey, is this better than the hospital....? Well, I guess so." He seems to have learned to keep those arms up like a champion boxer when his sister is around to fend off too much affection.
And finally, Mom and Johnny....he loves his mama.

Cath Procedure

2008-08-01T18:32:00.011-05:00

9:20 am, August 2

Shortly after the last update, the day shift nurse arrived and came in for a visit. She said that the night nurse had updated her on the situation. "Sounds like you are about ready to grab your baby and run out of here", she said, laughing. I told her I was okay, just ready to go. Asked about the cardiologist, she said she heard he got called over to St. Paul on an emergency in the NICU, then she told me she would try and track him down and see what could be done to expedite things.

About 45 minutes later, she came back and said, "I tracked down the doctor and talked to him on the phone, I told him 'I've got a dad over here that is about ready to bolt out of here, I don't think he's going to wait until you get here.'" She was laughing about it because I think she made it sound like I was an "irate parent", which I totally wasn't at the time - it was pretty funny. Maybe she thought I would become one if we didn't get out of here soon. Anyway, she told me he took time-out to review the x-ray on the computer network, asked some questions, she gave us a great report that all was under control, and he said he didn't need to see me. The nurse said she had some last paperwork to do and disconnect Johnny from everything and then we could go. The nurses on 3rd floor are about as fine a group of caregivers as you can find anywhere, from what I have observed. They are just great.

I started loading up the car and we worked on Johnny to get him ready - he's now back asleep, ready for our departure, in his infant seat. It's 9:20 am and we are ready to go! This is the last post until we are home.

Here we go, up and over the fence! RUN JOHNNY, RUN !!! It's great to be out!!

7:45 am, August 2

Still here.....but hopefully not for long. Johnny had a pretty good night once we finally got moved to our new permanent room on 3rd floor at about 12:30 am. He slept most of the night except for the occasional wake-up for a diaper or something. Tried to keep things as close to how it is at home as possible and he seemed to respond well to that. His nurse was great.....we had a few good laughs over why we were here and how it didn't seem like we needed to be. After completing all the admin paperwork and registration info (another reason to avoid an overnight stay!) I finally hit the sack about 2:30 am. No need for an alarm clock, the x-ray machine rolled in at about 7 am and had everybody up. Now just waiting for the on-call cardiologist to come by some I can plead my case again. Johnny is sleeping in.

11:15 pm

Don't think they are going to let me and Johnny out of here tonight. Johnny is doing fine, and I finally got him to sleep after all the events of the evening. He created some excitement around 10:00 pm, they moved us from the ICU to the short stay rooms. There didn't seem to be a lot of staff around so there was a delay getting his food going....nothing happening. He pretty much lost it and was kicking his legs so much in protest I think the oxygen meter got loose on one of his toes....his oxygen levels dropped down to 50-60% for a few minutes and created some panic among the nurses. I was not concerned, I have seen him when this occasionally happens and it didn't happen this time, something was wrong with the meter. They called the doc and he ordered us up to 3rd floor for the night, in the mean time everybody finally cleared out of here after they adjusted his oxygen sensor on his toe and I wrapped him up as close as I could to how we do it at home, got the food going on my own since nobody else was doing it, and rocked him to sleep in his bed......resulting in oxygen levels at 70% on room air (I turned off the supplemental oxygen myself). Then I went to the front desk nursing station to plead my case for release or delay of the move to 3rd floor....I found no sympathy, only concern that "3rd floor has more experience with heart kids" - something I am already aware of having spent a month there in May.

So here we are....I guess we will have to make the most of our little slumber party.

9:00 pm

Met with the doctor to review the results of the cath procedure. Pleased to report everything went very well. He was able to obtain a lot of good data, photographs, and information that will help with the Glenn surgery. Pressures and measurements were within normal ranges, for the most part. There was not a significant pressure difference across Johnny's atrial septum which reduces the likelihood that he would need his Glenn surgery immediately. There will be more consultation on this on Monday when his medical team is back in the office and his surgeon and cardiologist can review all the information. Too soon to know what the outcome will be but it is encouraging we may be able to delay the Glenn for a few weeks.

Johnny is in the PICU now and is alert and looking around. He's a little irritated about the lack of food situation but otherwise is doing fine. Around 10 pm they will allow him some food. His oxygen levels are a little low (60-65% saturation) so we will be watching this closely in the next few hours. This is probably the indicator that will determine if we can make our escape tonight or if we will need to wait until tomorrow. Kind of a homecoming of sorts in the ICU - a few familiar faces have stopped by to say hello. Ironically, they have us in the same bed and room that he was in back on April 26th when we arrived here for the first time.

More later.....

8:05 pm

Another call from the OR, they are done with the procedure and are moving Johnny to recovery. His doctor will meet with me and review how things went when he is able to do so.

7:30 pm

Just received a call from the OR, everything is going according to plan, they were able to take some good photographs of Johnny's shunt and some shots of the interior of his heart. They have completed some diagnostic pressure tests across different areas of his heart. Johnny is doing great and is comfortable, all vital signs stable. More diagnostic work to complete, possibly another 30-45 minutes before they finish and withdraw the catheter and move Johnny to recovery.

6:30 pm

Johnny and I arrived at the hospital at about 3pm. So different from last time, when everything was so strange and unfamiliar. Now it's a familiar place. Not exactly glad to be here, but it's certainly different this time. Within a few minutes of our arrival they told us everything was running late. 4:30 procedure had been pushed to at least 5:00 pm, maybe later. The delay isn't really that big of a deal, the big deal is that Johnny isn't getting any nutrition...per doctor's orders prior to surgery. I am thinking that my comforting skills will be put to the test. That's okay, it's been a long time since Johnny and I had a "boys night out" just the two of us. Sounds like they will want us to stay overnight but if there is any way I can escape with him, even at 2 or 3 am, we are out of here and heading home.

He was alert for awhile, everything was okay, I entertained him with some of the toys Lea packed, then at about 3:30 he fell asleep peacefully in my lap and had a nice nap until about 4:15. Then he was up awhile again, kind of fussy but we walked around the now all too familiar pre-surgery staging area. He really did great, considering. At about 5pm, they were saying it would be closer to 6pm so we kept each other company until about 5:30. I look forward to the day when he can play cards or something so we have additional options to pass the time. By 5:45 the visits by the various docs started to occur and we knew it wouldn't be long. 6pm they came to get Johnny - I handed him over with the usual hugs, kisses, and pats and again had that strange and empty feeling one can only have when handing your child over to the doctors to be put under anesthesia for a medical procedure.

Should be about 2-3 hours before I get a report about how everything went and what was learned. We may not know a final decision on the Glenn until Monday when all the docs, his surgeon, and cardiologist review the results and make a decision about surgery next week or later. I'll post more here when I have an update from the cath.

Thanks for all the notes of encouragement and prayers for Johnny and our family. They really mean a great deal to us as we head into this next chapter of Johnny's life.

Plans Accelerating

2008-07-30T19:44:00.004-05:00

Some additional discussion with Johnathan's doctors and review of the echo results from Monday have led to a change of plans. The thought now is that there is too much risk to open up his atrial septum with the cath procedure on Friday and the plan is to take care of the problem when they do his bi-directional Glenn. This will mean an added procedure to the Glenn and will include having Johnny on the heart bypass machine. It most likely will also mean a much earlier Glenn surgery - now tentatively scheduled for next Wednesday, August 6.

The cathertization procedure will still happen on Friday but now the purpose is solely for diagnostic reasons to gain valuable information prior to his Glenn. They will monitor pressures in each heart chamber and will also monitor lung pressure to gage his level of lung health and pulmonary resistance. We are scheduled to arrive at the hospital at 3:30 pm on Friday to check-in, with the cath surgery scheduled for 4:30 pm. The plan is that Johnathan will remain in the hospital overnight as he recovers from the cath.

If the measured pressures during the cath procedure are not creating that much of a differential, and his heart is not under too much stress, there is a chance that they will let us wait a few more weeks for the Glenn surgery, otherwise we will proceed with the Glenn surgery next week. He's 3 weeks short of being 4 months old, and it's a little unusual to do the Glenn before 4 months old but he's of fairly good size (about 12 pounds) and above the weight threshold so his medical team is confident he is ready. As long as there is no medical risk to Johnny, we would prefer to wait a few more weeks because he's really shown increased levels of energy and an ability to interact more with us the past 7-10 days. We've really been enjoying our time with him and he seems to be enjoying all the interaction, too. But if we need to do the surgery next week, we are trying to prepare ourselves and Juliana and get things ready to go.

We would sincerely appreciate your thoughts and prayers as we again enter a new chapter in the life of our family and little Johnny. I'll update more as events unfold.

Last item of note....a big thanks to Lea for all the nice words in the last post. Don't really know what to say, I'm humbled and moved by her comments. Just trying to do my part and keep up with her and all the love and devotion she shows these kids on a daily basis.

Dave's Birthday

2008-07-29T20:54:00.002-05:00

I (Lea) am taking over the blog today......

Happy Birthday, Dave!

Today is my husband’s birthday and this post is a tribute to him, a wonderful husband and father for which I am so thankful. Through the past difficult months, I have seen Dave reach down within himself and find the strength to be an encouragement to me and continue to be his steady and fun self for Juliana.

I love watching Dave with our children. I always felt that he would be a great father and I was right! He is such a devoted father, his love for his children shines through and when I watch him, it makes me want to be a better parent. He is such a great role model and teacher for Juliana. They have a beautiful relationship. He is wonderful with Johnathan. He stayed with him many of the first nights in the NICU when I didn’t feel that I could. He figured out how to comfort both of our children first, and then taught me how to do it. He has been an emotional constant for Juliana, when I have sometimes been an emotional rollercoaster. He often chooses to spend time with his children instead of taking some much desired “alone” time.

As a husband, Dave has been so supportive of me throughout my pregnancy and Johnathan’s first few months of life. When I was struggling with nausea and fatigue in the first trimester, he took on more responsibility for Juliana. He has been getting up with her if she needs something at night ever since I got pregnant, so that I can get more rest. He prayed with me every night during my pregnancy for Johnathan’s health, life, and heart condition. He let me decide when to quit pumping my milk for Johnathan, even though it meant more work for him to take care of the kids while I was pumping. These are just a few of the ways he has cared for me. He is a caring and thoughtful husband and he has been a great encouragement and support to me throughout these last several months. I love you, Dave! Our family is so fortunate to have you as a husband and father.

Cath scheduled for this Friday

2008-07-28T22:24:00.001-05:00

I brought Johnathan to his scheduled cardiology appointment this morning. The plan was also to do an echo cardiogram to evaluate his heart and determine if things were on track for his upcoming 2nd heart surgery (bi-directional Glenn, tentatively scheduled for Sept. 17). The results of the echo showed a couple of things that are causes for concern. His opened atrial septum has virtually closed off and is causing some irregular pressures on the inside of his heart chambers. Back when he had his first cath procedure not long after he was born, the doctors used a balloon procedure to open up his atrial septum and relieve the pressure imbalance. This new development is causing some stress on his heart. The second concern was some leakage through his mitral valve. It appeared to be relatively minor but since he will ultimately be a single ventricle/single valve patient, there is a lot at stake with the proper functioning of his mitral valve.

The outcome of all this is that everything on the schedule has moved up. Before today, the plan was for a CT Scan August 15, a cath procedure August 29, and the Glenn on September 17. We are now moving right to the cath procedure, scheduled for this Friday, August 1. This procedure will place everything in motion to move toward his Glenn surgery which will most likely be moved up earlier than September 17. The plan this Friday is to again do the atrial septostomy to relieve pressure imbalances, take a good look at his heart, and perform some diagnostic testing to gain some important information prior to his next surgery.

Overall, we are taking things in stride, although the suddenness of the change in plans is an adjustment. Johnathan is doing fairly well, he's comfortable, looks good, and is showing a good activity level. I'll update more on Friday as we prepare for the cath procedure.

Juliana

2008-07-18T22:44:00.000-05:00

For some time I have been meaning to update a post with a few pictures of Juliana and share a little more about life as a big sister. Probably over doing it on the pictures but I can't help it - she's got me pretty bad. We continue to be amazed and so very thankful of how Jules has adjusted to life with Johnathan. I really don't think it could be going much better. We are really blessed each time we see them together. She often comes in the house and says, "I want to see Johnny," and before leaving says, "I want to say good-bye to Johnny." The picture below gives you an idea of the joy of having them together.

I realized the other day that we are going to need to take some extra measures before Johnny has his next surgery to work with Jules and prepare her for it. It's going to be more difficult on her this time because he's been home and she's so much more emotionally invested in him. I'm certain she's going to miss him a lot when he's in the hospital. We will visit as a family, but it's going to be harder on her this time - she's really bonded with him. We'll get through it together as a family, but it will be even more important than his hospitalization before we brought Johnny home to include Jules in the process.

So how is Juliana doing these days? Things are going well for her. She's full of conversation around the house and likes to take charge of things, especially concerning Johnny. What he should wear, when to offer the bottle, what toys he wants, when he should wake up and join us, when he needs a diaper changed.....it can get to the point where she's almost a little "bossy" about things like she really is in charge and we are the nanny's of the house. It's pretty funny, really.

Jules loves her books, and is starting to "pretend read" - some of her favorites she has pretty much memorized so to someone that didn't know what she was doing, it would seem impressive. The other day Johnny was in the pack-'n-play. I heard Jules out in the living room by the pack-in-play going through one of her books, doing the pretend read. I looked out there to check on her and she had pulled the coffee table over to the pack-'n-play and was sitting up on the edge, right near the pack-'n-play, with the book upright in her lap and facing toward Johnathan. She was "reading" the book and flipping through the pages, like she was the teacher at school and Johnny was the little student enjoying a good story time. It's moments like these that can make all the concerns disappear and you just enjoy watching your kids and your thankful that you have these two wonderful little blessings in your life.

The following picture sort of captures the fun we sometimes have around here. This is what happens when Dad is in charge of bath time. This picture will be proudly displayed at Juliana's graduation party, her wedding (if I can ever get past the thought of boys within 100 yards of her), and other important milestones in her life. Truly a classic photo that will live through the ages.
Jules is full of that wonder and curiosity about everything and all new experiences that only a 2 1/2 year old can have. I love the picture below because it sort of captures that expression on her face of curiosity that we see every day. I was having a hard time getting her to look at the camera so I told her I had a little monkey on my shoulder. She turned around slowly and looked around the camera, trying to see if there really was a little monkey sitting there.

I never would have believed how much I enjoy being a Dad. The sacrifices of time (and sleep!) and what you have to put on the shelf for this season of life are a trade off and I do miss some of the things that I used to do more often, but there is so much joy in the journey with these kids that it far outweighs the sacrifices. I wouldn't trade it for anything. The challenges with Johnny add another dimension to parenthood that we didn't experience with Jules but the joy and wonder of having a new baby in the house is there to experience, as long as you don't get too caught in the concerns that swirl around our little guy.

So here we are with two kids: a cute new little boy with a challenged heart and some other complexities we are trying to help him with and a wonderful little girl that loves her baby brother and is just loads of fun, despite the occasional "melt down" that only a toddler can have. There are days when I think Jules might be the most well-adjusted person in the house. She just loves and enjoys Johnny in the most uncomplicated way. There was a day not too long ago when we had some news that was a set back and at the end of the day, I'm dwelling on it and feeling kind of down. At the end of the day it's time for Jules to go to bed but she needs to say good-night to Johnny first. I brought her into his room and she got up real close to him and in the nicest voice, said, "Good night, Johnny - I love you!" - the lesson for me (again) - dwelling on the "what might happen" just robs you of the experience today. Jules doesn't know what I know but I can try and set it aside for now - we just need to love him, everything else will take care of itself.

Last, a few recent quotes from Juliana. I keep track of some funny things she says and she provides a lot of material. She's on to the whole thing and now sometimes when she says something funny that makes me laugh, she will say, "You better write that down!"

"When we say 'hmmmm...' it helps us think" - she started saying "hmmm" when she was thinking about things, so I asked her where she learned how to do that, this is what she said.

"Is me ready to be a grown-up yet" - what she asked Lea shortly before we brought Johnathan home.

"Let's do a family hug. I really like doing that kind of stuff."

"Johnathan only knows one word - 'whah, whah, whah'" - what Juliana reported to her teacher at pre-school her first day back after Johnathan arrived home.

"What's that thing sticking up?" - proven to have keen observation skills for anything unique or unusual, Juliana asked this question while witnessing one of her first diaper changes of our little Johnathan.

"It's a shame you have to go to work tomorrow." - what she said to me Sunday night after a long holiday weekend (4th of July). We were talking about what a great time we had together over the weekend.

Cardiology Appointment

2008-07-11T21:24:00.004-05:00

Johnathan had an appointment with his cardiologist this week. By all reports, his shunt (a 4 mm diameter synthetic bypass between his heart and lungs) is holding up well and his heart and lungs are functioning well. It's quite interesting to hear his heart beat through a stethescope (he has his own, it hangs in his room). There's a single beat (the mitral valve) followed by what sounds like the crash of a bass drum as blood "blasts" through his narrow shunt. From a cardiac standpoint he is progressing very well and moving favorably toward his next surgery. His oxygen levels are in the mid-70's - not ideal and below the target low 80's but not too far off the mark. He is gaining weight, comfortable, easy to console, and generally a fairly happy baby - all good signs that point toward good cardiac health. At least good cardiac health relative to Johnny's heart condition. His respiratory rate of 60-80 breaths per minute is higher than it should be but it's about as good as it's going to get until his next surgery. Despite doing well he is still in that state of feeling like he is doing aerobic activity all the time so he tires easily.

We still wait for that first genuine smile to confirm some level of happiness.....that will be a big deal for us. We see faint glimpses of it from time to time as the muscles in his little checks and mouth try and figure out what to do in response to something he is feeling.

I can't say the positive cardiology appointment was much of a surprise as we have seen Johnathan really doing well from a cardio-vascular standpoint the last couple of weeks. His color is good, his breathing is about as even and regular as it has ever been, his heart beat is consistent. We are thankful for the positive report and realize that of all the things going on with our little guy, the cardiac issues have taken a back seat to some of the other challenges. The surgery will be a big deal for him, though, so the focus will once again turn toward heart issues later this summer.

Johnathan is scheduled for a CT scan on August 15 that will set things in motion moving toward his Glenn surgery, most likely in early September when he is about 4 1/2 months old. He will be of good size and should be a strong little baby at the time of the surgery so his team expects that his heart will hold up well to the surgery. His biggest challenge might be the possible development of chylothorax issues (fluid accumulation around the lungs) as a result of his surgery. There was concern he developed a slight case of this post-shunt but it cleared quickly so didn't have much of an impact on his recovery. The Glenn surgery significantly alters his venous pressures (increased) that can lead to problems of poor lymphatic drainage resulting in the development of chylothorax. It's not uncommon for babies to struggle with this post-Glenn. We will all be on high alert for Johnny after his surgery, watching carefully as he begins to recover.

But that's out several weeks in front of us and right now he's home with us and overall doing fine. Nothing new about the hearing concerns, we see some other doctors in the future and will do a retest to continue to investigate the issues. I was calling his name tonight in a voice that I think he can respond to better (different frequency) and he turned his head everytime I said his name. We know he can hear something, what we don't know is how well or how impaired his hearing might be. Day to day, it changes nothing as far as how we care for him, although I do occasionally flash him the "I Love You" sign Jules taught me.

Sunday marks a special day for us as a family. Johnathan is 12 weeks old and will pass through a threshold where he will have been home with us longer than the length of time he was in the hospital after he was born (6 weeks). We are thankful for every day we have with our little blessing of a boy, and we hope and pray for many, many more to follow.

Love Unspoken

2008-07-03T21:44:00.001-05:00

Johnathan had his third hearing test today. This was a one month follow-up from the last test he had on June 1. Not the best results to report, it appears that he has at least some level of hearing loss. Some things are inconclusive as far as how much hearing loss and like so many things with Johnny, we need some time to pass and many more additional tests to fully understand the situation. His left ear didn't respond very much at all to the test and when they directly tested his ear drum they couldn't get any response. So his left ear isn't doing much for him as far as hearing goes. He probably picks up some muffled sounds especially at higher frequencies but that's about it. His right ear was a little better but still did not come close to passing the test. They were not able to get a good analysis of his right ear drum - he had a gas attack followed by a minor melt down - basically telling us - "quit sticking things in my ear!!" - so that was the end of the test. We were there for about 90 minutes and for him that's a long stretch to be up and awake and involved in something.

Several theories on what may have happened to his hearing. One strong possibility is that some of the medications he had during his surgery and recovery have contributed to his hearing loss. This is not uncommon. The basic thought is that his other issues like his cardiac challenges are a matter of life and death so you do what you have to do and if he loses some capacity for hearing, you've traded a lesser problem for a greater benefit. It's still tough to reconcile this, though. As his parents, we want everything for him, with no trade offs. It's like his chest x-rays - every time he has one I wonder what it is doing to him. These kids can often develop early cancers because of the repeated exposure to radiation. Unfortunately, not many options - the doctors work with us to try and minimize the exposure but at the same time, a chest x-ray is important to monitor his cardio-vascular condition so it's a fact of life for him.

So we may have some significant challenges ahead of us with Johnny and his hearing ability. Several tests ahead, with more diagnostic detail as we move forward in progression. His specialists want to retest again in about a month. Like I said earlier, similar to other things he is facing, it's another chapter in his life that has been started but is far from finished. He's like a book that someone is writing with a different process, not beginning to end, but written with many chapters started and progressing at once, none finished expect the first two - his pregnancy and birth.

In the middle of all of this, our little Jules provided some reassurance to me out of nowhere, without even knowing it. Sometime last week she was messing around with her hands one evening. I was watching her - she was using her left hand to open and fold down some of her fingers in her right hand to get her fingers in a particular position. She got everything just the way she wanted, then held her hand up and looked at me, proudly smiling of her accomplishment, and said, "This means I Love You!" I guess they were teaching some sign language at her day care. So here our little daughter is demonstrating "I love you" sign language to me within days of my son being diagnosed with hearing loss. We don't know yet if it will come to this for Johnny, maybe he would only need a hearing aid of some sort, but it gives me hope, and I don't consider it a coincidence. God probably orchestrates beautiful instances of hope like this every day around us and our situation with Johnny but I'm afraid most of the time I'm too caught up in the busyness of everything to notice. The lesson here for me is that there are unspoken ways to communicate love and if he can't hear at all someday, we at least have an alternative. Not what I would choose for him and if I consider what it would require to learn sign language it's a little overwhelming to think about but for Johnny, somehow we will do it as a family if we need to. Beyond just the caring and nurturing, we can tell him someday through a gesture just like Jules demonstrated. If Jules brings home more signs, I'll be paying closer attention from here on out.

Recent Photos

2008-07-02T23:37:00.003-05:00

A few photos below from recent days around here.

We continue to be so thankful for Jules and her adjustment to having Johnny home with us. There are occasional challenges, but far fewer then I would have anticipated and overall she's doing great with everything. Most of the challenges center on Jules wanting to be around him too much or to be too involved. She loves to help care for him and is always full of advice. I shot this photo after she said, "Daddy, he's fussy because he wants me to pat his back." She started giving him a little pat, he calmed down, and then she proudly said, "He's quiet now, he liked that!" It's wonderful to see them interact together....Johnny looking up at her with eyes wide open and with an expression on his face like, "who are you, anyway?" and Jules just enjoying time with him and watching his little movements and sounds.

Here's our little champ showing off his scar in the picture below. It has healed well and is the same location of the incision when he has his next heart surgery, the Bi-Directional Glenn. Not much for hair except some fuzz, and yes, it is kind of red, much like Juliana had for her first several months. Johnny's latest thing is touching his nose and extending his arms straight out and waving them around. Yesterday Lea witnessed him trying to roll over for the first time. He got up part way on one side but couldn't quite make the flip over. We rejoice in the little things and each small sign that shows development and progress.

Last Saturday night we loaded everybody up and went out to a restaurant for dinner - first time out with all of us together since Johnny was born. Everybody had a great time, Johnny was quiet and alert and just took it all in, probably enjoying the different sights and sounds of being somewhere new. Jules also had a great time and brought along a special guest, "Monk" the monkey (laying on the table).

Reasons for Hope, Challenges Ahead

2008-06-30T20:24:00.001-05:00

I’ve been writing the following over the past few days to update many on Johnathan’s status. Warning - this is a long one.

We’ve had Johnathan home with us for 4 weeks now. We have much to be thankful for – his cardiac situation is fairly stable, he is showing some good signs of physical and cognitive development, the transition with Juliana has gone well, he’s gaining weight, and we are enjoying having him with us. It’s amazing to see the changes in Johnny on a week to week basis. Johnny turns his head when you say his name, he moves around a lot when he is awake, he can focus his eyes and attention on you when you are talking to him, and he often sleeps well and relaxed. He’s probably behind where he would normally be for a 2-month old baby but with all the time in the hospital, the ICU, the surgeries, and everything else that created a shortage of interaction and learning time, it’s doesn’t seem that surprising. And the support from family and friends continues to be a tremendous blessing to our family. We've been through a lot and Johnny has overcome so much. It gives us hope as we move ahead.

There are times when all seems almost normal. Last week we went on a walk together with the double stroller – Jules in the front, Johnny riding in the 2nd chair. Jules sang and pointed out things, Johnny slept. Us and the two kids, just out for a simple walk. It was nice. Jules continues to enjoy her baby brother although Lea occasionally has heard the typical “when is he going back into your tummy” question. You would never know she would ask this based on how she is around him but I’m sure it’s an adjustment for her to see Mom and Dad so preoccupied at times by our little guy. Sometimes we all have dinner together at the table, Jules full of chatter about the day, Johnny on the table in his bouncy seat, looking all around and quietly listening to the conversation.

Having said all this, many formidable challenges remain for us. There are days where I have a sense that we are on a journey like the stories of old pioneers heading west across the plains in covered wagons. Many unknowns and difficulties out in front of us. Some hard times behind us. For now, day to day, it’s summer, and despite some ups and downs, most days things are at least manageable. But looking out on the horizon, where we are headed, there are these gigantic looking mountains looming in the distance that get larger every day as we approach. It’s pointless to wonder how we will get through them because we don’t have many options. We don’t have a choice with Johnny, we have to do it and keep moving forward to get his heart to a place where it will sustain him. So we press on, day to day, moving ahead.

We have started to discuss the plan for his next surgery, probably sometime in late August, early September. He has a CT Scan scheduled for August 15 that will put some things in motion to schedule his surgery. He’s been home such a short time, it’s hard to believe we are going to need to bring him back in just a couple of months and turn him over to the surgeons again. But it must be done because the shunt connecting his heart to his lungs is too small to sustain him long term. The next surgery creates a host of challenges for Johnny beyond just the risk of the stress on his heart. The lymphatic drainage concerns that he had after his first surgery could be an increased challenge for him with this second surgery due to the increased pressures that will result in his venous system once the surgery is complete. In simple terms, his next surgery will effectively reroute all his pulmonary blood flow in his upper body directly to his lungs, bypassing a return to his heart. The left side of his heart will do all the work to circulate his blood to the upper part of his body and back to his lungs before pumping throughout his body again. We’re trying to get out in front of any potential problems for him by getting in contact with some specialists and discussing some possible options for his nutrition but there’s really not that much that we can do to prepare for it or minimize the risk of his next surgery. Just like so many things, he will have his surgery and then we will watch to see what happens and let Johnny tell us what he is tolerating and what he needs from his medical team to get well.

The rigor of his doctor appointments can be a little overwhelming. In a typical week, he has three to four appointments with different specialists and evaluations going on that can be a little difficult to keep up with. We try and schedule these as much as possible on days when Jules is at school to ease the coordination issues. It’s most difficult for Lea as she goes to all of them, I try and attend the most important or complex ones to help keep track of where we are at with various things.

Beyond his doctor appointments and his next surgery, there is an entire tier of secondary issues surrounding him that on a day-to-day basis can get overwhelming if you dwell on it. His nutrition and feeding continues to create some real challenges for us. He has developed some kind of reflux problem that appears to cause some discomfort and heightened concern for us when he has an episode. It’s not uncommon for babies to spit up but with Johnny and his compromised cardio-vascular system, watching him struggle to breathe and turn his favorite shade of maroon-purple after something comes up can be a test of our fortitude and your faith in his ability to fight through it. For most babies, it’s an inconvenience, for him it seems at times to be a matter of life or death. Last week he had an episode that almost resulted in an immediate trip to the emergency room in the middle of the night.

We continue to do work with him on the bottle but he really isn’t taking much volume probably in part due to the reflux problem and the short duration that he can tolerate a bottle before everything unravels and he’s either too tired to continue or the experience is unpleasant because of how he feels and he is trying to catch his breath. His respiratory rate is high and it’s difficult for him to breathe and take a bottle at the same time. The best analogy I have to think about this is when I am doing a race and I’m in oxygen debt and want to take some fluid at an aid station. Your chest is pounding, you’re trying to breathe and then take a drink all while running and remaining in motion. The drink goes everywhere, you try and swallow down what you can in between breaths, and if you are lucky the air and liquid goes down the right location. Our little guy goes through the same thing when we are holding him in our arms and giving him a bottle.

I never could have imagined how difficult it would be to struggle through where we are at with him when it comes to feeding. We long for a time when we could just provide a pleasant and nurturing feeding experience for him, but we don’t see the light at the end of the tunnel on this one yet. There are numerous appointments with equally numerous specialists to help us with the feeding, nutrition, and gastrointestinal issues but it often seems like the medical team is in the “trying to figure out what’s going on” stage instead of implementing things to help get him on track. And when things have stabilized, other things change that throw the current plan off track requiring some work to get moving in the right direction again.

Another issue is his hearing ability. The day before we were discharged from the hospital, he failed a hearing test, and then right before we were discharged, the same thing happened on a 2nd attempt. This is not that uncommon for babies to fail a hearing test, but as we brought him home, we had some concern about this. As the days have gone by and we’ve interacted with him and observed him, it’s hard to believe he can’t hear. His sister’s loud singing through the house wakes him up on a regular basis, he turns toward us when we say his name, and we tip toe around when he is sleeping because if we don’t, he will often stir if we make a noise or the floor creaks. We have another appointment to follow-up on this next week, and although you try and stay positive and confident with what you are observing, it’s just another thing on his “list” that creates some concern. We had similar things come up like this back when he was in the hospital that kind of passed us by but not without some days of wondering what it would all mean. At one point in the hospital, somewhere around when he was about a month old, we had three different doctors tell us that Johnathan had a tethered spinal chord, which could mean many things including future surgeries and possibly some debilitation later in life, maybe even problems with walking and normal function. A few days and a few tests later, a neurosurgeon told us that his spinal column appeared fine and they thought it was a false alarm. Such is life with Johnny….the rollercoaster ride of life with him that puts us to the test every day. Somehow we try and push through it because if you let all these things consume you, you could not possibly love and care for him as he deserves to be cared for. We would be too wrapped up in all the concern and anxiety and then it’s difficult to just enjoy the wonder and experience of having him with us, holding him close, and giving him the life and nurturing experience a newborn baby deserves.

And then there is the mysterious genetic story that continues to unfold. I’ve lost track of how many times his results have come back “normal” from the various genetic and chromosome tests he has had, dating all the way back to the pregnancy when he was 20 weeks old. “Normal” was all we heard, and then a week later or so there would be another test, to the point that you almost wanted them to quit looking for things thinking that if you look hard enough you can probably find something. Each test was apparently “more in depth and comprehensive” so we kept heading down the path wondering what we would find knowing that with Johnny, anything we can find out about him ahead of the curve is helpful, since he is always full of other surprises anyway.

The call finally came that they had found something, a mysterious tiny extra strand on chromosome no. 7. To date, no one is sure what it means. They tested us for the same thing to see if we passed it to him, but so far the results aren’t back yet. If one of us has an abnormality, I would bet money it’s got to be me – I have some known quirks…but nothing definitive from the lab, so we wait. In all likelihood, there will not be much known about this and there may not be much if any literature or research on this as it is probably very rare. So this will probably remain a mystery for quite some time and they have told us that this is another thing we will just have to wait and see what happens with Johnny and how things go for him with the idea that it will be years before we will really know if there are any effects from this. Apparently there are many people that have conditions like this and may not even be aware of it. At the same time, there are days when the monsters of doubt and uncertainty sneak up on us and we wonder the awful questions of “will he be able to walk…to talk, go to school, run around (at least slowly or for a few minutes) and just have the fun a kid should be able to have….” - on it goes until you get a grip and shake yourself out of it.

As I conclude this I realize that it has been good to take a step back and reflect on what’s going on right now. One can get lost in the whirlwind of activity surrounding our little one. I think the bottom line for us on a day to day basis is to try and press through all the challenges and uncertainty and just be really good parents to both of our kids while maintaining our faith and assurance that God is with us and sustaining us through these times. It’s probably as basic as that, really. Live day to day with the joys and challenges of the day without letting ourselves get too far out into the future of what is out there for Johnny and for us. Continuing to work on not worrying about the problems of tomorrow, just focus on today. Easier said then done and if you are praying for us or thinking of us, that’s a good focus to have for us these days. Johnny gives us reasons to be thankful and hopeful every day if we watch for them and if we don't let the clouds of uncertainty and doubt obscure the view.

Our faith has been shaken by this, there is no doubt about that. Probably a topic for a future entry sometime. In the big scope of things, we are hanging in there and doing okay with our little guy, thrilled to have him home with us and thankful for the blessing of each day he is with us. I think I can also speak for both of us when I say there is nothing we have gone through that can compare with how this has stretched us and challenged us as much as the past 7 months have.

On Thursday Johnny has another hearing test scheduled. I’ll provide an update and will also try and post some photos later this week.

Father's Day

2008-06-16T22:48:00.001-05:00

A few photographs from Father's Day. Had a nice quiet day at home with everybody. This might be one of the first pictures with all of us together. It was a special day for me....first Father's Day with two kids. Johnathan has been home with us for two weeks.

It was really nice to have Mom and Dad here (again!). We said good-bye to them on Monday as they hit the road back to Missouri. We will miss them and all the great help they provided to us. Thanks again Mom and Dad! They will be back to visit again sometime in August. Jules had a great time with them, as always.

Jules gave me a little picture frame artwork thing for Father's Day. She made it at school and it shows an imprint of her foot. She's so much fun right now and getting bigger and more independent all the time (at least she thinks she is independent). Here she is checking in on her baby brother.

Out numbered

2008-06-13T18:44:00.002-05:00

Last night was a first...a milestone for me. My parents went out to a concert, they vacated the house shortly after dinner. Lea was thinking of going to her book club and I told her to go. It was close, she almost decided not to go, but she ended up going and had a great time. So there I was, alone in the house at about 7:30 with Jules and Johnny needing to go through the night time routine to get ready for bed. I've been alone with them before, that's not a big deal, but not for the important nighttime routine. I'm out numbered, so you go zone defense and do what you need to do...."man to man" will not work this time. Need to keep them somewhat together, try to get Johnny settled down so Jules and I could go through the routine, then back to Johnny later if he needs me. That's the plan anyway. Jules likes to poke at Johnny so when I'm trying to get him calm and relaxed she wants to touch his feet, his hands, his head.....not that conducive to calming him down. But we eventually got there.

Then we go into her room, start reading books, going through the routine. All going well until Johnny starts to fuss and make noise. Jules and I look at each other, she says "What's wrong with Johnny, I think he needs something" I'm thinking, "okay, what now?" "I think Johnny wants to have story time with us tonight", I say. So off we go to the bedroom (while I am thinking, "how is this going to work"), and there I am, Jules on one side, Johnny on the other. I've got one hand on the book (Big Red Barn), that same arm around Jules, who seems excited about the new venue and is squirming all over, the other hand on Johnny giving him the little comfort pat, and we are reading in a whisper. Amazingly, in about 10 minutes, Johnny is asleep. I think he just woke up and wanted a little companionship, which we were glad to give him. Later I told Lea about it and she wondered if he recognized the sounds of the bedtime routine with Jules since he was a part of that all those evenings when he was in the womb.

We tucked Johnny in, then back to the room with Jules, I finish the routine with her, get her tucked in and by 8:45 all is quiet. How about that, I think. I just experienced parenthood on a new level.

First Week Update

2008-06-08T21:47:00.006-05:00

I had not intended to take a week off from the blog, it just kind of evolved that way. Lots of things going on over here, definitely less time to record events and report on what is happening. Overall, things are going very well. It's really nice to have him close to us and with us all the time. It's also so much easier with Juliana. No comparison to the stress and strain of trying to take care of two kids in different locations when Johnny was in the hospital. She's just great with him and is really adjusting well. I'm sure it's easier for her since my Mom and Dad are here and she gets lots of attention, so we will need to keep a close eye on things next week but we are both really encouraged and enjoy so many special moments seeing them together.

We are so thrilled to have hospital life behind us, at least for now, although on a daily basis it seems something comes up and we wonder if we are headed back there. My hospital bag remains packed.....seems like if I unpack it, we might end up back there. Friday is a good example, Johnny developed some relatively minor symptoms (I'll spare you the details, it had to do with what goes into his diaper) but with Johnny there is really no "minor" anything so after some discussion with three of his different doctors, at least one of them wanted us to bring him to the ER for observation with a possible return to the hospital. We basically said "no thanks, how about Plan B, we will keep a close eye on him and monitor things". Symptoms cleared, he is doing fine. Nothing against the hospital, the care there is great, but it just seems to us that the best place for him is with us unless there is something going on that is really urgent or life-threatening.

Many doctor appointments and follow-up exams in the next few weeks, it will keep us busy, especially Lea. This week he has two pediatric appointments, an appointment with the cardiologist, and an appointment with his team working on the feeding/nutrition issue.

It's great to see Johnny sleeping peacefully so often in his own bed (or bouncy chair) here at home with us. When we brought him home, he slept a lot for a few days. Overall he's a good sleeper which is kind of bittersweet because part of the reason is probably because of his cardiac condition and how hard his system is working all the time. Sleep is really important for him because of his high metabolism and need for growth before his next surgery. He sleeps fairly well during the night, at least the last half of the night, usually needing some attention around 2:30 am or so before quickly settling back down to sleep until 6 or 6:30 am. He's on a midnight to noon type of schedule so we are trying to shift him to something closer to 6 to 6. So getting him to sleep in the evening is usually the challenge, but at least right now it's an easier sleep pattern on his parents compared with Juliana when she was 6 weeks old. Jules continues to be "in charge" (or at least she thinks she is) of the many tasks associated with taking care of little Johnny. She sometimes tells us that she loves him and seems to really like having him around. The other day he was cooing and making noises when she came home from school, she was listening to him and then said, "I think he said that he missed me!!"
The photo below is Johnathan enjoying some baby entertainment after dinner one evening. Juliana likes to select the different animals on display, she is his resident entertainment director. The cluster of little animals and rings shown below is Juliana's design for him. It's been really wonderful to see his rapid development this week, after just one week having him home. Helping him get good sleep, steady nutrition, and lots of healthy interaction when he is alert seems to really be making a difference for him. It's fun to see the changes with him and how he can focus on things and what his preferences seem to be as they develop. Big J and Little J having some fun together as only a brother and sister can do.

Many challenges ahead, so we are trying to just take things one day at a time and enjoy each day and the nice small moments we have together as a family. One last note about Lea. She is doing well. She tries to get out of the house with Johnathan and go for a walk when the weather is nice. Today they went for a little stroll together. I think the highlight last week might have been going out one evening to get her hair done. It's wonderful to see her with Johnathan and to witness her love and devotion for this little boy.

Settling in

2008-06-01T22:27:00.002-05:00

Jules and Johnny are asleep, at least for now. First night should be interesting, but it is really wonderful to have Johnathan home with us and to be able to keep an eye on him all the time, give him a nice, quiet place to sleep, and take care of what he needs. Everything is going well. Fairly smooth transition to get everybody settled in. I knew some things would come up this afternoon that I had not thought of. Overall, nothing major. Lea asked me where the diaper pail was shortly after we arrived home, I had to dig it out of the garage and get it cleaned up. The bouncy seat was quickly put to action - like his sister he seems to prefer it to anything else. Quickly realized I had to find some batteries for the vibration feature to keep him happy. I had to make a quick trip to Walgreens to get some essentials.

Johnathan is doing great, he has been sleeping much of the time since we arrived home. Juliana seems to really be enjoying the experience. She is happy to point out all that needs to be done. Johnny cries and she is quick to offer advice. "He needs a new diaper" or "he needs a pacifier, the purple one (or green one)." She is fascinated by his little features. She likes to quietly look at him and then all of a sudden she will say something like "he has such little ears!"

It's slowly sinking in that he is really home with us. I need to do some serious "decompression" of all that has happened in the last six weeks. The support from so many has been remarkable. We have never been alone on this journey, and we thank so many friends, family members, and so many others that prior to this circumstance we had never met. God has been faithful to us, through the darkest valleys and the moments of hope. Thanks to all of you for your words of encouragement, your prayers, positive thoughts, and words of kindness. I could write so much about this, and I intend to at some point. Right now I need to get some sleep. When you have a baby, you quickly learn to sleep when the kids sleep, so that's what I'm going to do.

Johnny's Home!

2008-06-01T14:50:00.004-05:00

At 1:15 pm this afternoon we made our escape from the hospital. We finally have him home! More later, we are a little busy right now.

Going home scheduled for Sunday

2008-05-31T11:33:00.004-05:00

Looks like tomorrow is the day, the discharge nurse is scheduled to meet with us Sunday morning, so if all goes according to plan we should be out of the hospital in the late morning/early afternoon time frame. Today we are going over more details, talking about general care for Johnny, follow-up visits and appointments with his various doctors, and other different things. Also going over his medications, placing an order at a pharmacy so we have things ready when we have him home. He isn't on that many meds anymore, he's down to a few basics including baby aspirin, Lasix, Prevacid (for reflux) and an iron supplement.

I had a little chat with Johnny this morning, told him we need to "lay low and just relax" today. Nothing crazy....no partially collapsed lungs, no wild fluctuations of his oxygen levels, no major fussy episodes.....everybody just stay nice and calm....he seems on board with the plan, and is resting comfortably. Lea is also getting some rest and feeling better, so it looks like everything is coming together well for a Sunday departure. Johnny is 6 weeks old tomorrow, it will be great to have him home for the first time. My parents are on the way from Missouri and should arrive later today so we will have some help at home during this transition time.

We haven't unwrapped some of the many gifts, cards, and presents people dropped off for Johnathan. We have been waiting until we had him home. Juliana announced this morning that she will "unwrap all his presents for him because his fingers are too tiny." She has been eyeing those presents and gift bags for quite awhile.

Getting Close...

2008-05-30T20:46:00.002-05:00

Johnny is still in the hospital but it will not be long now. We should have him home with us either Saturday or Sunday at the latest. Lea came down with a bad cold earlier this week, so that has held us up a little for our departure. It's been a little crazy the last few days with Lea sick and trying to wrap up everything at the hospital. Many last meetings, forms, and consultations. Johnny needed a few more exams and tests, but almost everything is complete now so he will soon be ready to go by the end of the day Saturday or Sunday morning. With Lea sick the past few days, she needed some rest and a brief break from hospital life for a day and a half to get to a point where there is not much risk to Johnny when we bring him home. It seemed like it could have been the same thing that Jules had last weekend so the cardiologist recommended we proceed carefully. Didn't want to bring Johnny home and have him come down with a cold right away, as we are sure that Mom will be spending quite a lot of time with him once he is home.

I'll update more frequently as we approach the big event of Johnathan's homecoming. Thanks to all for your continued support and prayers, we are in the home stretch!

Lung is Clear

2008-05-26T22:03:00.002-05:00

Brief update, we are glad to report that Johnathan's team of doctors came to a consensus that his lung x-ray looks good and back to full capacity so we have cleared that hurdle. We have come back to square one from about a week ago when they were starting to talk about when we might be able to bring little Johnny home before his mysterious infection developed followed by the partial lung collapse. All is back to "normal" now so all he needs are a few very boring days of nothing unusual happening before we are able to bring him home. Friday has been mentioned as a possibility, but as we have witnessed, plans can change quickly if anything happens.

He also passed a milestone today. His weight is now 1 ounce above his birth weight of 8 pounds, 3 ounces. Certainly not the ideal situation to have your baby at his birth weight 5 weeks after birth but after all he has been through, it's just part of how this usually goes with these little ones going into multiple surgeries so early in their lives. As long as they let him continue with steady nutrition (I've lost track of how many times his food has been withheld), he should continue to gain weight. It's really amazing how much different he is now than just 5 weeks ago. When I look at the picture at the right (day one of his life) vs. the one at the beginning of this post, he really looks like a different baby. He may not be much bigger, but he is definitely changing and developing as new babies do, despite all the obstacles he has had to overcome. He looks around quiet and alert quite often now, and focuses in on things to look at. When he sleeps he can sleep quite soundly. Lea gave him a rattle toy today and he seemed to like looking at it and shaking it. The last few nights have been better for him so maybe he is settling down a little. I am sure we are in for some surprises and challenges when we bring him home, but we will glady accept them.

Thanks for your thoughts and prayers for us and our little guy as we make another run at getting him home. We used to think that it was fine to wait and make sure everything was okay and stable for several days before we got him home because of any concern that we could end up back in the hospital if something happened. But now we are thinking differently and want him home as soon as possible. He had a really fussy night before the chest x-ray that showed the partial lung collapse so who could argue with us that if he would have been home with us we might have been able to provide more comfort and calm, avoid aspiration if that's what happened, and avoid the lung collapse? The care at the hospital is nothing short of phenomenal, but it's not mom and dad all the time and it's not home.....which is where a baby should be as long as there is no immediate danger. We can't get him home with us soon enough. Thanks for hanging in there with us, all the prayers, support and encouragement from everyone is also nothing short of phenomenal, it sustains us on a day to day basis.

Lung is looking better

2008-05-24T21:08:00.002-05:00

We are glad to report today that Johnny's right lung is showing signs of improvement. The more aggressive treatment appears to have paid off. They are reducing the "patting" and mist spray from every 4 hours to every 6 hours and have agreed to skip a session at night if he is sleeping well. Difficult to predict when he will be back to full lung capacity, this can take some time. But at least he is headed in the right direction. On the home front, Juliana developed a runny nose and has a cold, so our plans to spend some time as a family at the hospital are on hold. We were hoping to get some good time together during the holiday weekend but looks like it will not work out. She sneezes often and it's too high risk to bring her anywhere near Johnny.

Lung update

2008-05-22T22:02:00.002-05:00

Just a quick update about Johnathan's right lung, the x-ray this morning showed about the same collapsed area as the day before so they decided to try a more aggressive treatment with more frequent patting of his chest, using a mist spray of some type that helps clear his passages, trying to keep him upright after taking his medications, etc. He really sounds pretty raspy and rough at times and then at other times he seems to breath fairly clear. They will evaluate day to day with the plan that over the weekend if the lung does not re-inflate and recover on it's own, they will manually do it early next week with a procedure that includes going into the lung and pumping some some quick bursts of air to the area needing some help.

Some ups and downs....

2008-05-21T20:30:00.005-05:00

Overall things are progressing okay with little Johnny but not without a few bumps in the road now and then. Nothing seems to be straightforward with our little guy, but we are hanging in there with him, with the thought that with each day we are one day closer to when we will be able to bring him home with us. He was one month old yesterday.

On Monday a blood test revealed that he might be experiencing some kind of infection since his white blood cell count was up. The thought was it could be from the g-tube surgery, which kind of caught us off guard and left me wondering if maybe it wasn't such a good idea after all. The solution for the infection was typical antibiotics but since the concern was it could be his stomach the orders came through for no food (again!). It grieves us when we can't let him have food in his stomach and sure doesn't help with the gaining weight goal.

Late Monday he had an MRI done and they had to use anesthesia so although not a surgical procedure it was the typical take him to the pre-op area, hand him over to the docs and nurses, wait in the surgery waiting room, see him briefly in recovery and then back up to 3rd floor. Can't believe I say "typical" but the reality is this was the 4th procedure for him and the 4th time in the surgery waiting area for me. Not the typical 1st month for Johnny.

By Tuesday morning the infection had apparently passed, his white blood cell count was normal again so allowed food at least at a slow rate to get him some nourishment. Good news for us since they had told us that if the infection persisted, they might need to withhold food for 5-7 DAYS!! Couldn't believe that one but we were very thankful this was avoided. The rest of Tuesday was more or less uneventful, the results of the MRI came back as normal so that was also good news.
This morning (Wednesday) the story from the morning chest x-ray was that Johnny had a partial lung collapse of an upper right lobe. He had a rough night and was quite upset much of the time so this might have caused something to happen, no one is really sure. Although a concern and set-back this is apparently not that unusual for babies of any condition. So now a respiratory specialist comes in on a regular basis and does this "patting" on him to try and get his lung cleared and functioning better.

From a cardiology standpoint, he is recovering well, so it's just these little things he needs to get behind him with a few days of consistent feeding and no strange or unusual developments. At this point it's difficult to guess, but probably a week out before we could bring him home now after the development of the lung problem, this usually clears in a few days but the chances of getting him home sometime this weekend are probably off. Now we need to clear up the lung problem and then get a few good days behind us before we can bring him home.

Also learned a good lesson (the hard way) about feeding through a g-tube yesterday. I had Johnathan in my lap, everything was fine - we were having a nice time together. After awhile he was getting a little restless so I got up to check his diaper. I stood up and heard something fall on the floor...looked down and there is the end of the tube that connects his food supply to his g-tube. So I'm thinking, "okay, not good, how long has this been disconnected" - then I look down at my pants that I notice are wet and realize the tube must have disconnected about when I sat down with him which means while I was holding him, I was having his food pumped into my lap which has now soaked me pretty good. And then it occurs to me that maybe this is why he is starting to get fussy....no food in his stomach, it's in my lap. Such is life in the hospital. Lesson learned - always make sure everything is connected well.

Here are some additional recent pictures from visits to the hospital. Juliana continues to be quite taken by her little brother and always brings him a little gift of some sort when she visits him. It's really sweet to see her interact with him and another huge motivation to get him home with us so they can spend more time together. There will be challenges with her having him at home, no doubt about that, but it can't be more difficult then the challenges of having him them apart and trying to take care of them at the same time.In between all the hospital activity, we try and get some good time with Johnny holding him and just trying to be "normal" with him but it's not easy. Today I was holding him and he was sleeping peacefully, we were having a really nice time, then one of his doctors comes in, then the respiratory specialists to treat his lungs, then the nurse for the regular vital sign checks....on and on it goes. We really long to get him home with us where we can finally get some real extended time with him and just let him be a baby instead of a patient.He is alert now on a regular basis and it seems like he isn't getting enough sleep. Not a real surprise since there is so much activity all the time at the hospital. Once we get him home, the sleep thing is going to be a real challenge. It always is with any newborn but with Johnny we are thinking he is going to be so over-tired from lack of sleep and everything that he has been through that we are in for some real challenges. Okay with us, though - we will gladly accept them to have him home with us.
Today we said good-bye to Lea's mom, Jordis. She's been with us about 10 days and has been a big help to us. The picture below is of the three lovely ladies, Lea, Jordis, and Juliana. We have had so much help from family and friends and are so thankful for everything, we couldn't get through this without all the help. Thanks for your help, Jordis!

Making Progress

2008-05-17T21:06:00.006-05:00

Note: If you are looking for pictures, go to the end of this post.

It’s been a busy last couple of days at the hospital. Seems like about every hour or two there is another doctor coming in for an exam or consultation regarding one thing or another. Overall, Johnathan continues to recover on track. He has been able to try a couple of bottle feedings in between exams and everything else going on. About the same as before as far as the volume he can take but his speech pathologist (also works with infant feeding issues) is encouraged that he appears to have a good technique. The trick will be to work with him and pace him so he doesn’t get too winded before he can finish. The surgery doesn’t appear to have done much to increase his stamina or capacity. As far as throttling back the blood flow to his lungs the surgery was a success and that was the primary purpose to begin with, but we had hoped he might have a little more energy to eat better.

Since his surgery, they typically have had him on a continuous feed pattern through his tube so he probably has not experienced the normal “eat until full and sleep until waking up when you are hungry again” routine. We are thinking the bottle work will go better when we can get him moved to this type of schedule so he will take a bottle on an empty stomach when he is hungry and highly motivated. Should be able to get to this by sometime tomorrow (Sunday).

On Wednesday and Thursday we had a few different consultations about options we have been considering. The key to get Johnathan home with us at this point is to get him gaining weight and on a normal feeding routine that we can replicate at home. One option is to work with him in the hospital on the bottle feeding until he can take enough through bottles alone and then bring him home. Best case predictions on this plan would be a couple of weeks of work and a more realistic prediction is probably at least 3-4 weeks of work with him at the hospital before he could go home with us. The thought of having him in the hospital another month was a tough one for us to consider.

The alternative we considered was to have a G-tube installed that would allow feeding through tube directly to his stomach to supplement whatever he isn’t taking by bottle. They don’t send kids home with an NG at this hospital (what he has used for nutrition so far) so the G-tube was really the only other alternative. We really weren’t that excited about the G-tube option since it is another surgery, although very minor, but in the end when we weighed the pros and cons, we decided to do it. What it really came down to for us was getting him home as quickly as possible so we can continue to work on feeding in a controlled and consistent environment along with being able to nurture, hold him, and bond better with him. When we considered the additional time we would have with him and with Juliana and the benefits of finally getting everybody under the same roof, it wasn’t that difficult of a decision.

He had the surgery for the G-tube yesterday morning (Friday), only lasted about 30-45 minutes. Was glad to finally get some reports like, “went very well”, “he did great”, and “very routine”….His first two surgeries, the early cath procedure and his BT shunt were not exactly “routine” so was refreshing to have something be so uneventful. His surgery was around 9am, by noon we had him back in the room on 3rd floor with us and he was more or less his old self. Today (Saturday) they allowed him to start taking nutrition again through the new G-tube and by tomorrow he will be back to his previous intake levels of 20 ml per hour. We are also relieved this last surgery was the last of the periods where they need to withhold food from him for a prolonged period of time for a surgical procedure. Just like with the other procedures, he couldn’t have food in his stomach, this one at least for a shorter period of about 24-hours. It’s really tough to have your baby so fussy and know all he wants is some food in his tummy and you can’t do anything about it.

So with the G-tube in, the procedures and major things should be behind us at least for this phase, now it’s just making progress with a bottle, getting him taking nutrition and gaining weight. Too soon to know when we will have him home with us but I think everybody is thinking next weekend might be a possibility if all goes according to plan (as I write that I think, “what has gone according to plan?” – not much, really, but we are thankful we have made it to this point even if the route was a little different then what we thought it would be). Next Sunday would be five weeks from when he was born so we would certainly be ready to have him home with us. Thanks for your continued thoughts and prayers for us, as we enter this new chapter of needing to focus on feeding and gaining weight.

During those periods when he is awake and alert he likes to entertain himself with a mobile rigged up over his bed.

Aunt Megan visits

2008-05-15T06:33:00.008-05:00

Johnny had a very special visitor yesterday, his Aunt Megan stopped in for a visit to see him and hold him for the first time. Johnny enjoyed the visit and seems to love being with Aunt Megan as much as his big sister, Juliana.

Several doctor consults and exams in the past couple of days, we have resumed the routine that was common back in the St. Paul NICU - numerous tests to try and get a complete picture for Johnny and all that is going on with our little guy. Difficult to get in some good work on taking a bottle in between all the exams and consultations but Lea was able to do a little work with him yesterday to restart the learning process that was on hold during surgery and recovery in the ICU. Johnny continues to recover well from the surgery. Some have asked when we might get Johnny home with us. Some work to do with the bottle and other tests and exams along with monitoring his progress and recovery. They want him recovered well from his surgery, feeding well and showing a trend for gaining weight before we leave the hospital, so it will take some time to get to this point. Nothing definitive yet.

Back on 3rd Floor

2008-05-13T09:25:00.002-05:00

Pleased to report that Johnathan was just transferred out of the ICU at about 9:20 am, he is back on 3rd Floor. We had a delay for the transfer yesterday due to some logistical issues and changing of some of the doctors in the ICU that wanted to observe him longer before signing off on the transfer. 12 days in the ICU...great to be back on 3rd floor. Overall, Johnny is doing fine.

Mother's Day recap

2008-05-11T21:51:00.001-05:00

The pictures below don't require much description. It was a great Mother's Day for Lea. Johnathan continues to make good progress. A steady stream of "disconnections" for him through most of the day. By evening he was down to the minimum with his heart and respiratory monitors attached to his chest and foot and the NG. They even took off the little oxygen tubes into his nose so he is now breathing room air 100% on his own with his oxygen saturation levels in the target zone most of the time. His medical team issued orders to be transfered out of the ICU on Monday. Another huge step for us. We are so very thankful for the countless thoughts and prayers of so many that have sustained us. Thanks to God for his faithfulness. We will be back on 3rd floor in the pediatric unit, in a "normal" hospital room. I never thought I would be so glad to be back on 3rd floor again.

The emphasis this week will be getting into some "normal" patterns as much as you can with a baby in the hospital and working on feeding and nutrition. "Normal" is a highly relative term for us these days. We will be back to trying different bottles and feeding methods and schedules for little J to see what works for him along with continuing to monitor his condition and recovery after surgery.

Jules had a great time with Johnny today. The above picture captures her fascination and desire to help out (and maybe even "over help") with all care given to Johnny. Several times on the way home from the hospital Juliana proudly reminded Lea, "I helped you calm Johnathan down!"

It was also great to have Lea's parents here visiting from Bismarck, North Dakota. Three generations shown in the above photo. Another reason it was a great mother's day for Lea - here with her mom Jordis, and both of our children for the first time. Lea's dad Marc came by with her mom the day before to meet Johnny for the first time. Jordis will stay with us to help us out.

My parents departed on Friday to head back to Missouri after spending a month with us. We could not have made it through this without them. We will never forget their love and caring spirit for us and Juliana during these challenging times and we will be forever grateful. Thanks Mom and Dad, we love you!

Mother's Day

2008-05-11T07:29:00.001-05:00

Our little Johnathan came through in a big way for his mother. I had a few pep talks with him late last week and told him how we needed to work toward getting that ventilator out before Mother’s Day so Lea could hold him. With a little cooperation from a few different sources today, we will make that happen. He's doing well and making good progress. We haven’t held our little one in 10 days…one of the disadvantages of having major heart surgery and an extended stay in the ICU. There is no better Mother’s Day gift Lea could receive then holding him close.

I haven’t written that much about Lea in recent days. There is a lot I could write about, but Johnathan tends to get the spotlight. That changes today because there is no better day to pay tribute to Lea then today, Mother’s Day. Three weeks ago today Johnathan was delivered to us through some rather exciting circumstances. Since that time I have witnessed many images of Lea’s love for Johnny that have left me humbled and in awe, and sometimes in tears. One in particular comes to mind. Not long after he was out of surgery, Lea leaned over close to him and placed her hand on his little head, gentle touching him and providing whatever comfort she could. She leaned in closer to his ear and sang a lullaby to him in her sweetest voice, tears flowing down her face, falling on his. Her love and strength for our little boy is displayed daily.

The off and on separation while he is in the hospital is by far the hardest part of the entire process for Lea, probably even more difficult then his surgeries, seeing him after surgery, or anything else we have been though. He was with her, inside her, for months. He was very active in the womb, she could feel him all the time. Sometimes he kept her up at night with his wild acrobatics. And now they are separated. Either by distance when they are not together or by his medical status, what he is hooked up to, or other obstacles when they are together at the hospital. She gave birth to him, but can’t be close to him all the time, as the mother she wants to be. It’s difficult.

Through it all, her determination to love, nurture, and care for him continues to emerge in very different ways then it did for our daughter when she was born. She is fierce in her determination to provide a good nutritional supply for him. The pump and associated apparatus appears to be a permanent fixture in our bedroom. She’s deeply concerned with what has happened and Johnny’s circumstances – how little he has been held compared to what would have been her desire to hold him close as much as possible through these early weeks, the stress he has been under through the two surgeries, the multiple medications and 18 chest x-rays he has had.

I know Lea and how she will deal with this and the evidence of the plan has already started to unfold. The books have started to arrive, and I am certain they will continue. Books with titles about reattachment after separation, nutrition for kids with health concerns, and fostering positive development. The research on the Internet, the consultations with people at the hospital – it’s all started, and will continue. She will become an expert at many of these things in a short period of time, and Johnathan will begin to benefit from an outpouring of all this knowledge and understanding, given through the tender loving care that only a mother can give. I have no doubt that Lea will work tirelessly to reverse whatever effects might linger from the past few weeks and future surgeries Johnathan must have to live. Above all else, she will continue to love him and care for him as only a mother can do, and as she has done so well with Juliana.

So to Lea, my wife, my partner in this challenging effort called parenting……Happy Mother’s Day. Johnathan and Juliana are so very fortunate to have you as their mother, and I am so blessed to have you by my side on this journey. Words are not enough to express our thanks for all that you do for us. May God bless you abundantly.

My love to you,
Dave

Lea with Johnny before surgery - we hope to repeat this today

We're holding our breath

2008-05-09T10:37:00.013-05:00

VENT WATCH: New report, at 10:30 am on Saturday they declared Johnny stable enough with his breathing to receive some food. This is a significant hurdle. Many more to clear but for now he is on his way to stay off the ventilator. Thanks to all for your thoughts and prayers for our little one!

Earlier on Friday....

The doctor came in at 10:30 am and gave the order we have been waiting for - "Let's get that tube out"....more to follow.....

At 10:40 they began the process. Not much to prepare for it since they had been turning down the work the vent does all morning to prepare for the removal. They established a fine mist of epinephrine to help him breathe with the tube out. They held it near his nose, and then in a second, quickly pulled the tube out. He was on his own. It reminded me of that night over in the St. Paul NICU after he was born. A few muffled cries, then struggling to breathe. For the first time in over a week, he was on his own with his lungs.

After about 10 minutes he was starting to struggle. You could see it in his chest and the struggle on his little face. I held his hand, we talked to him and encouraged him. I found myself trying to breathe in rhythm with him to try and understand what he was feeling. We tried to calm him down to get him quiet and relaxed. They rigged him up with a little oxygen tube to his nose, doesn't extend inside but blows some pure oxygen into his nostrils to help keep him breathing well.

At about 11:00 they wheeled the cart over with the supplies they use to put the vent back in. The doctor came in and looked at him with growing concern. He was laboring pretty hard to breathe. Each breathe was a struggle. We held his hand, we patted his back, we talked to him. You could tell that if he just relaxed, he would probably be able to breathe better. The doctor came in and prescribed a sedative to try and help him relax. It’s a risk to do this because if he is too sedated, he will forget to breathe, but at the same time if nothing was attempted he was going back on the vent and would need sedatives anyway. We stood by his side, trying to remain positive for him and comfort him. It’s a hard experience to watch your baby struggle to breathe and not be able to pick him up to comfort him or really do anything for that matter. I leaned over the bed and tried to pat him and comfort him like you would when holding him. This was really the critical point for Johnathan. I don’t think the doctors had much confidence he was going to make it through this stage.

By about 11:15 Johnny seemed to be doing a little better with the sedative, he was a little more calm but still struggling. It’s a tough situation for him because he hasn’t had anything in his stomach since 4am, then they pull the tube out and basically make him completely awake and irritated, and then the challenge is to get him to calm down. They can’t get him any nutrition because there is a chance they may need to reintroduce the ventilator. The doc gave him some more time to see what he would do.

At 11:30 the doctor came in to check on him again and although he was still struggling somewhat, the doc was willing to give him a little more time to see if he could work through it. Every 15 minutes they check his blood gasses to see if everything is at the right CO2 levels to verify there is a good exchange in his lungs. For the next 30 minutes, everybody watched him closely. We stayed close by, at times with him, at times on the sidelines just watching, trying not to excite him, praying for him, focused on him, trying to will him to breathe better and remain calm. By noon, I think he was finally wearing himself out with the struggle and seemed to start to settle down. It’s 1pm now and he goes from stages of calm to agitation, trying to rest as much as a baby can do when they are worn out and hungry. His breathing is better and at times gets into an even rhythm. He has a long way to go before he has cleared all the hurdles to be on his own permanently. It could be going better, but at the same time he cleared the early challenges and bought himself some time to struggle forward. It’s hour to hour at this point. Thanks for your prayers for Johnny and for us. Hard to say how this is going to turn out at this point. I'll post again when something changes.

Adjusting our Thinking

2008-05-08T22:40:00.002-05:00

I now clearly see the problems in my past thinking. I have shared here before that we had high hopes we could get Johnathan home from the hospital a few days after his birth and put off his first surgery for a while. We had prayed about this, we stayed positive about this, and we hoped and worked toward this in the hospital, after his birth. It didn’t happen. It almost happened, but when things were just looking good, the very next day the world kind of fell out from under us, and two days after that we were transferred to Minneapolis Children’s Hospital for Johnny to have surgery, and we are still here. His heart was getting enlarged, his lungs were starting to experience stress from increased blood flow. The schedule for his first surgery was accelerated. It sometimes feels like we will raise Johnny in the hospital. Some have asked when we might get out of here. There is no end in sight yet of when we will get him home.

Aside from the difficulties that go with what we are experiencing, we have learned a great deal about Johnny and our expectations. We are learning that he will tell us what we need to know and what the plan is. We need to let go of the idea that we can plan what we want to do and achieve with him. The reality is that he will determine much of how this unfolds. As his parents, we are here to help him, love him and care for him as best we can, and put him in the best possible position to succeed. We must be a strong advocate for him. Sometimes we need to get persistent with the doctors for a decision or action. But we are learning we can’t control much of the outcomes of how he is doing or do much to speed the process along.

That’s where my thinking went wrong. It would have been great to get him home from the hospital a few days after his birth, but I probably wanted to do that for myself as much as for him. It seemed at the time that it would have been so much easier for us compared with the path we are on now. I’ve learned some of this same lesson with Juliana but with Johnny everything is magnified many times over. The stakes are so much higher. I remember when Jules was learning to walk. I really wanted her to walk, and she could do it, but she wasn’t that interested in it until she could do it really well. I would encourage her in all sorts of ways, but she would just drop down and crawl, happy to be playing with me. Then, finally, when the time was right for her, she started walking, and was walking very well.

Johnathan is a complex little guy with a complex anatomy. We are going to need to learn to follow his lead. When we discuss issues with the medical team, we often say, “He will tell us what we need to know.” They work with these heart kids all the time. We are going to need to continue making adjustments to get on board with Johnny’s plan. Removal of the ventilator is a good example of this. The team studies his x-rays, we look for all the indicators, I watch him “practice breathe” when he is awake, talk to him about it, encourage him, pray for him, trying to put him in the best possible position to succeed……when we try it, we will see what he will do….will his little spirit fight through any resistance to inflate his lungs and breathe on his own? I hope and pray that it will. I’ll be there, cheering him on as best I can. It’s tough to feel so powerless to really help your little baby. We will do everything we can for him, even though most of the time it doesn’t seem like nearly enough.

ICU Updates

2008-05-02T06:08:00.035-05:00

May 9

8:45 am - nothing definitive yet on the removal of the respirator. I'll report more when I know what will happen. They have him on a routine to have it done today, just waiting for final consultation from his docs on the x-ray from this morning.

May 8

8:35 pm - removal of the ventilator is at least tentative for tomorrow, all hinges on chest x-ray in the morning and how much fluid output Johnny has during the night. He was wide awake and looking around and at me tonight, he has been off all significant meds except dopamine (for blood pressure) the last 24 hours so when he is awake he's wide awake and alert, seems real calm. His eyes are big and round now like newer babies have that have been out for awhile. I had a nice time talking to him and holding his hand tonight, talking about tomorrow and how great it would be to have him off the ventilator. This is the last post for the night. Thanks for any prayers offered for Johnny for tomorrow's procedure. I hope they can do it tomorrow, they typically don't do the ventilator disconnects over the weekend.

4:00 pm - a couple of the doctors from Johnny's team have reviewed the x-ray and don't think the results warrant a chest tube to drain fluid so for now looks like status quote through the night with possible pulling of the vent tomorrow. Still need consensus from the group on course of action but for now this is the plan. Lea and the nurse gave him a bath this afternoon so he is ready for the big day.

11:08 am - doctors had a conference with us to discuss the plan, here is the latest. They reviewed the chest x-ray from this morning with us showing some small amounts of fluid between pleural and chest wall, they would prefer that this is gone before removing the vent so the plan is to take another x-ray at 2pm, if this looks improved, they will not do anything, if looks the same or worse, they will install a chest tube for drainage of this fluid. Either way, the removal of the vent is now scheduled for tomorrow morning, with or without the chest tube. Almost need to expect changes at this point but we will see what develops. I had a little visit with Johnny about how nice it would be to get the vent out before Mother's Day so Lea could hold him for the first time in over a week. He agreed, we will work together toward that plan.

9:30 am - late morning post, was waiting for the doctors to round so we could discuss next step and I could report but still have not rounded. Some options discussed late yesterday included installing a chest tube to provide chest drainage or increase meds that act as a diuretic to try and get more fluid output. Johnny is resting comfortably, he wakes up now and then and looks around, so it's nice to have some good contact with him during those moments. The night nurse said he was awake most of the night but quiet. They installed a nice mobile above him so he has something to look at.

May 7

9:30 pm - Some setbacks later in the day today for removing the ventilator. This afternoon the debate continued about removing the vent. They compared his chest x-ray with yesterday and some on the team were concerned about developing pulmonary edema and removing the ventilator too soon when his lungs could not expand/contract properly so he could breathe on his own. They are pushing back the removal of the vent, probably will not happen on Thursday now. Not sure when, it's day to day. There was a theory that the edema was from excessive lymphatic drainage so the plan that developed included taking him off breast milk and giving Johnny some kind of fat-free formula. This was a difficult conclusion, especially for Lea. There will be more discussions about this tomorrow. So now we are more or less back to square one, tomorrow is 1 week from when he had the shunt surgery and no real time frame for removing the vent and trying to get out of the ICU. Original projections were 3-5 days in ICU after surgery so we are now looking like our stay will be way beyond that.

1:07 pm - plans changing again, there was some continuing debate with the medical team about if Johnny was ready to come off the vent or not so in the end the decision was made to delay one day and try for Thursday morning. Now we are kind of in this middle area where they started the process of withholding nutrition and reducing meds but will probably restart and then reduce again early a.m. tomorrow before attempting the process.

10:05 am - change of plans, they have started the process to try and disconnect the ventilator today, so today is shaping up to be a big day for Johnny, would appreciate your thoughts and prayers for our little guy for how he does with this. I'll post updates here as they continue to evaluate and begin disconnecting him.

8:20 am - no orders from the doctor yet to try the disconnect of the vent so most likely will not happen today, we will be inquiring during rounds with the doctors about schedule for tomorrow. Overall status quo on meds and how he is doing. Fairly quiet night, he had his normal fussy period early morning hours.

May 6

8:44 pm - looks like the vent tube removal might be delayed until Thursday, the surgeon was busy with a few emergency cases today and they may need another day to stabilize Johnny's meds and get him off of everything before they pull the vent. They want him very alert and ready before they attempt the procedure. It is a long process over a few hours to see how he does. It's his ticket out of here, we are pulling for him to make it. Overall his stats are good, oxygen, BP, and heart rate where they should be. He isn't on much for meds anymore but is resting comfortably and quiet this evening and seems fairly content as long as the nurses don't try anything that is too disruptive. They are up to 20 cc per hour of breast milk now so that also probably explains why he is resting so comfortably and content. Last report for the day. I'll update on the vent procedure schedule tomorrow morning.

3:00 pm - they are beginning to make plans to take Johnny off the ventilator, need clearance from the surgeon but most likely it will be tomorrow or Thursday. This is a big step toward recovery and probably his major hurdle right now to get out of the ICU. We have been cautioned about how it might go. He is small and newborn babies sometimes need to go back on the vent if they can't breathe on their own when it comes off, sometimes they get used to being on or there are things from the surgery that prevent them from breathing well. If they had to reconnect the ventilator, he may need to go back on for 5-7 days if not successful the first time so this would significantly extend his time in the ICU. Would appreciate your prayers and thoughts on this, we are trying to remain as positive as possible for Johnny that he can do it and are praying for him that he can stay off the vent when they disconnect it.

6:10 am - now that Johathan is more alert and aware of what is going on, he is returning to his usual more active period from 3am-5am, the nurse reported that overnight he was most active around 4-4:30. Overall the night was uneventful, they are continuing with the same plan.

May 5

10:00 pm - they had some trouble with Johnny's meds earlier so they were doing a lot of adjusting to get him back on track. His blood pressure had decreased possibly because of overcompensation with meds when it was increased so they had to add some blood volume which is somewhat of a setback because it is counter-productive to trying to get his system stabilized and working on it's own. The next day or two are important for him to get off the meds and stabilize his vital signs on his own so they can try and disconnect the ventilator. Would appreciate your continued thoughts and prayers for our little guy.

4:28 pm - about the same as last report, overall they continue to reduce some meds very slowly, also slowly increasing breast milk amounts to get him more nutrition. The nurse today made the observation that since Johnny is waking up and more alert he may be bothered by noise and people's voices. We asked if he could get moved to a private room on the side of the ICU and the nurse made arrangements to do so, now he has moved into a different room now that is quieter. The nurse described the day as "boring" - not a bad report for little Johnny, boring can be good as long as he is making steady progress.

9:49 am - Johnathan's blood pressure and heart rate are up as he adjusts to less medication. It's tough to see him work through the changes in his meds and see him under a some stress, but at the same time he has to go through this period to be awake enough to breathe on his own. The team works to find the balance to be slowly waking him up but to moderate any discomfort. Starting to discuss plans to take him off the ventilator. This would be a critical step to get him out of the ICU. Earliest they would attempt to remove the ventilator is Wednesday.

7:03 am - Johnathan had a good night, continued loss of fluids and equalization in his system. He continues to show signs of becoming more alert as they slowly dial back his medications.

May 4

10:35 pm - about the same story, continuing to reduce medications, Johnathan is showing small signs of becoming a little more alert but they are very careful to not get him alert too quickly so they can keep him comfortable. The nurse will check his weight in the morning with the hopes that he has dropped a good amount again showing that he is reducing his internal fluids to balance things out.

6:30 pm - not much new to report, the breast milk nutrition continues, glad to report it is coming out the other end. They are taking Johnathan off the Heparin and replacing with baby aspirin. Slowly making progress on the medications.

10:57 am - His nurse just started the first breast milk feeding through his NG tube since he had his surgery - more slow progress. Very low amounts, but now getting some good normal nutrition in addition to the standard IV's. Continuing to slowly reduce his medication while keeping him comfortable.

6:50 am - Johnny had a quiet night, minor medication adjustments. Oxygen levels within target ranges. They weighed him this morning and he had dropped some weight which was positive because he was overly heavy the past few days from some of the fluid retention due to the bypass procedure. This is a positive sign his system is regulating well and getting him back on track.

May 3

9:39 pm - not much change, they adjusted his air intake slightly to keep his oxygen levels in the target zone; also adjusting some of his medications, dialing back a little and watching for a response in his vital signs, so far everything looks okay. Praying for an uneventful night of rest and healing for little J. This is the last report for the day.

3:13 pm - Happy to report a "disconnection" sooner than expected - the surgeon came by and agreed it was okay to remove his chest tubes where they made the incision. Not much else has changed, but this is a step in the right direction.

12:35 pm - Johnathan's status is about the same. Trying to be encouraged that in general, boring reports from the ICU is a good thing. I'm looking forward to reporting sometime that he is getting disconnected from something, although it may be a while.

7:05 am - relatively uneventful night for Johnathan, his kidneys and system seems to be trying to get back to pre-surgery function to try and balance his fluid levels. Nothing highly unusual happening, they are observing him to have a typical recovery after the type of surgery he had - very slow at first. Thanks for your thoughts and prayers for little Johnny, we will be watching for some steady, slow progress the next few days.

May 2

9:58 pm - last report for the night, not much change, Johnathan continues to rest quietly, vital signs okay, they continue to make minor adjustments to keep him comfortable and moving in the right direction with the healing process.

5:04 pm - Johnathan's blood pressure dropped a little later this afternoon so they added some fluid to his blood to try and increase the volume and raise his blood pressure. Oxygen levels also dropped, there will probably be a lot of variability with this until he is off the ventilator. Overall, about the same as before, they are watching his vital signs closely but he remains in a relatively stable condition and is resting quietly.

1:50 pm - not much change to report, Johnathan remains stable. Every once in a while he moves his arms or briefly opens his eyes. Most of the time he is laying quiet. His oxygen levels have increased to the target range of 80-85% most of the time. They are adjusting his medication as needed to try and get his system recalibrated from the surgery. We can touch him and hold his hand which is nice to do.

9:45 am - A few of the doctors completed their rounds this morning. Overall, Johnathan's condition is about where he should be. Because he was on bypass they have cautioned that his recover will take longer as his body needs to recalibrate blood and fluid levels due to imbalances from the bypass procedure. He is expected to be here for several days, watching for slow progress as his heart heals from the surgery. He remains stable, and is in good care. His nurse is assigned exclusively to him and remains close by, closely monitoring his condition.

6:05 am - Johnathan had a good night, uneventful for the most part. He is stable and still under sedation. His oxygen saturation levels have been increasing steadily from the low 70's after surgery yesterday to the mid- to upper-70's - a positive development now that the shunt is installed. Ideally the doctors would like to see these stabilize in the 80-85% range.

In the ICU

2008-05-01T15:00:00.002-05:00

At about 1:30 p.m. they called for us and told us we could see Johnny in the ICU. Nothing can prepare you for seeing your own child in the condition he is in. When we arrived at the ICU last Saturday, there were a couple of babies that had undergone similar heart surgeries. Seeing those kids was difficult and gave us an unwelcome glimpse of where we were headed. When it's your own baby, it's a much more difficult experience.

We met with the surgeon. Johnathan was on bypass for about 20 minutes, but they didn't need to stop his heart. He is stable and doing okay, vital signs are good. The next 24 hours are probably the most critical period for him following this surgery. We would appreciate your continued thoughts and prayers for our little warrior. His heart is broken, the doctors are working to fix it. Our hearts break a little more each day for all that he has to go through.

Surgery Updates

2008-05-01T09:45:00.003-05:00

9:45 - the cardiologist stopped by and shortly after this Pam from the surgical team called, all prep work is complete, the surgeon was about ready to begin the procedure. We are in a private waiting room and will remain here until he is moved into the ICU and we can see him.

10:40 - the cardiologist came over to give us an update, overall the surgery is going according to plan, they are installing a 4 mm shunt based on his size and the geometry of his aorta and pulmonary artery.

12:15 - the major portion of the surgey is complete, the shunt is connected on both ends and the pulmonary artery has been disconnected. He is still in surgery as they finish the procedure and get him stabilized. They did need to put him on bypass for a short time due to some difficulties with the shunt to pulmonary artery connection. Early oxygen levels are lower than expected, but this can change over time as his body and heart stabilize after the procedure. I will update again after he is moved into the ICU.

Surgery Underway

2008-05-01T09:00:00.003-05:00

We turned Johnathan over to the surgical team about 10 minutes ago. There was a delay this morning in order for the cardiologists and surgeons to finish a meeting discussing patients.

The morning was similar to the time prior to the procedure on Tuesday. Johnathan didn't get anything to eat after about 3 a.m. but he did surprisingly well. We held him most of the morning. He was very alert, but calm. Much more alert then yesterday, more like his usual self. It was great to have him so awake, alert, and calm with us for about 2 hours before the surgery - a lot of interaction together. I took some pictures of him. I was able to get a nice picture of him after they removed all the EKG sensors - a nice picture of his little bare, pink chest. Today is the last day his chest will be without scars. We said a prayer for him before we left his room on 3rd floor. I carried him down just like on Tuesday, he was quiet, and looking all around as we walked. We happened to be on the same elevator down to the surgery floor as the surgeon. He looked a little tired, I was glad he was drinking coffee. We were ushered into the pre-operation room and were there for a long time. A few individuals from the surgical team came by to see us. The anesthesiologist went over the usual items. The discussion about pain management was difficult, especially for Lea.

The surgeon was the last meeting. A few items to discuss. Lea signed the release form this time. The surgeon thought they could avoid the bypass procedure. He left, and a nurse came back in with the anesthesiologist. We each gave Johnny some kisses on his head and told him that we loved him. I told him to "hang in there". We were escorted out to the hallway where I handed Johnny over to a nurse named Rachel and we watched them head down a few doors and into the surgical room.

They will keep us updated during the surgery. I will post updates here.

Surgery Plan

2008-04-30T21:19:00.003-05:00

A couple of meetings today with the team to go over the surgery tomorrow. About the same plan as reported earlier. They will install a shunt (small diameter tube) from the top of Johnathan's aorta to a pulmonary artery, probably the right side. After this is complete they will then disconnect the pulmonary artery leading from the heart and below the junction of the right and left pulmonary artery. In effect this will limit blood flow to the lungs completely through the new shunt. This is a temporary measure. His future Glenn procedure will really make all this obsolete, what we are really doing for Johnathan is buying him some time to reduce excessive blood flow to the lungs and preserve important lung tissue that will be damaged beyond repair without the procedure. Also with the hope that this may give him a little more energy to have more success with taking a bottle and not being out of breath. Ideal outcome is to have his oxygen saturation levels in the 80-85% range - he hasn't averaged these levels since the period right after he was born but the significant restriction of pulmonary blood flow to the lungs should help achieve this.

If all goes according to plan, they will not need to put him on bypass. They talk about using heart bypass procedures for babies like it is "not that big of a deal" but at the same time the doctors agree it is best to avoid. The thought of this is a little unsettling, they would "turn off" his heart, let the machine do the work, and then "restart" his heart when finished. Hopefully this can be avoided. Unlike the cath procedure, this surgery is major - in simple terms open heart surgery on a small baby. I keep telling myself that it must be done to save his life and it's entirely true. Without surgery, heart failure will accelerate and he would eventually suffer from cardiac arrest. His medical team is optimistic and we are, too. Johnathan has been through a lot, dating all the way back to the pregnancy, and he has shown incredible resiliency.

Thanks for the continued thoughts and prayers for Johnathan and our family. I have sensed that we are regaining our grip on things this week and I'm sure it is in large part due to the phenominal support from everybody. If we keep our eyes open to witness what is happening around us, we see that God has been faithful to us through many large and small measures of blessing that have happened this week. You are a part of that, thank you.

Surgery on for Thursday

2008-04-30T14:42:00.002-05:00

Quick update. The surgery is still scheduled for Thursday, 8:00 am. Johnathan is doing well today and back to the usual routine. Maybe a little more drowsy then typical but overall about the same. He had his usual fussy period last night in the early morning hours, also back to normal on that front. He looks good, with good color and he is comfortable. The neck line they put in doesn't seem to bother him at all. I'll update more on the plan for the surgery later.

Brother and Sister

2008-04-30T13:32:00.000-05:00

On April 27th, we brought them together for the first time. A good friend of mine told me that I would not believe how my daughter would seem like a "giant" compared to our baby. He was right. It's hard to believe Jules was that size at one time and I saw her in a new way - no longer a baby, she's a little girl, with growing confidence, independence, growing up quick. Another friend had told us that one of the most wonderful moments she had ever experienced was when her older son met his baby sister for the first time. Equally true for us. We were glad for the transfer from St. Paul to Mpls since the St. Paul NICU had not allowed kids into the unit because of the risk to spread a virus.As we expected, Juliana was fascinated by her new baby brother. She spoke in quiet, hushed tones as she asked us questions, and said things like "It's Johnathan", "He has little hands", and "He made a noise." She liked it when he moved his little face or hands. The look of amazement on her face was really fun to see. She had just a glowing expression of fascination on her face for a long time. We had told her that Johnathan would have a present for her (we had purchased and had it ready by Johnathan's crib). When I asked her if she wanted the present or wanted to see Johnathan first, she said, "Johnathan". After a short time looking at him, and gently touching his head, she announced she wanted to show Johnathan something. First it was her bunny that she brought (named "Button"). Then it was a piece of kleenex, a book, just about anything within sight that she could see. The "big sister" was taking over, and she wanted to show and teach Johnathan about all the things she knew about.

One of the most special moments for me was after we had spent some time with Johnathan and we went to the playroom on the hospital floor for a break, and Jules told me that she wanted to bring Johnathan a present. I should have thought about this before, but completely unprompted she wanted to do it so I told her to pick something out to bring him. She rummaged through a box of toys and pulled out a set of teething rings and said, "This is for a baby, Johnathan will like it." We brought it to Johnathan and she placed it on his bed, right by his head. She asked me if he could hold it. I told her she put it in a good place since he was sleeping and he would see it right away when he woke up.

Later that night, when I was with Jules, going through the bedtime routine, she kept asking me if he had the gift she had given him. She wanted to know when we would see him again. She wanted to know when he was coming home. She wasn't upset, just very inquisitive about it. I told her that maybe we would go visit Johnathan again sometime before he came home, and she said she would like that.

It will probably be awhile before we can get Johnathan home so we are planning another visit to the hospital with Jules. I have also talked with some professionals at the hospital that help families navigate through these situations with their kids. A woman named Judy will join us next time to talk over some things with Juliana and check in with her to see how she is doing. We are glad to have the help and guidance from someone that has been down this road many times with other families.

We remain optimistic and hopeful for a second "first time together" when we get Johnathan home, under our roof. I am confident that will be equally as special and significant. In the meantime, we will make the best of it and attempt some good times together until we get him home.

Photos from Earlier

2008-04-29T20:38:00.003-05:00

The picture below was taken on Monday. He enjoyed a lot of time in the bouncy seat when taking naps. He's in that stage where he is changing a lot each day. A lot of hair coming in quickly. He's getting a lot of nourishment for his high speed cardio system that we need to slow down. Maybe this explains the hair growth.
The picture below was taken right before the cath procedure. Somehow we kept him quiet right until the end even though he hadn't had anything to eat for a long time. As long as the hand kept patting him he seemed to be okay.

Back in our room

2008-04-29T16:57:00.003-05:00

We just arrived back in our room with Johnathan. He looks good and is sleeping peacefully and soundly and probably will for some time as the medication wears off. When we adjust his blanket, check his bandages, etc. he stirs and stretches a little with his arms and legs before going back to sleep. He is breathing on his own. It's great to have him back with us and to see him again. I'll post some pictures later tonight that I shot before the surgery. Thanks for all the thoughts and prayers for our little guy. The BT Shunt was again confirmed for 8:00 am Thursday.

Cath Update 2

2008-04-29T15:09:00.003-05:00

Just talked to Johnathan's surgeon, the procedure on his atrial septum is complete and was successful. Based on their findings and the analysis of his heart the doctors want to move forward with the shunt procedure on Thursday. They are going to take the opportunity while he is sedated to fit a neck line to his artery in preparation for the surgery on Thursday, currently scheduled for 8:00 am. I'll update again when I am able to see Johnathan.

Cath Update

2008-04-29T13:54:00.002-05:00

Just received a call from the cath room. They have the instruments into Johnathan's heart and they are measuring pressure differences and taking pictures of the ASD and VSD, as well as the mitral valve. Everything is going well and according to plan. Thanks for your thoughts and prayers for Johnathan.

Cath Procedure Underway

2008-04-29T12:58:00.002-05:00

We passed Johnathan to one of the nurses in the cath procedure room about 15 minutes ago. We each gave him a kiss. I told him "hang tough, little buddy." They wrapped him in a warm blanket and got him ready for the procedure to begin. Should be about 3 hours before he is out. Could be less, could be longer. They will update us a couple of times during the procedure. If there is anything noteworthy, I will post it here.

His last feeding of breastmilk was at 3:00 am, at 6 and 9 they gave him some clear liquids, that was about it. Just like an adult, you can't have any food before surgery. We wondered how the morning would go since he would be so hungry, but it wasn't too bad. If left alone, he would quickly unravel and express his need for nourishment as only a newborn can do. But as long as we held him, and used the typical best comfort methods that he likes, he kept calm and stayed asleep. I was surprised at this, but he remained nice and calm. Steady pats on the back, hold him close to my chest. Seems to work everytime. If he spends too much time with Lea, he wants to nurse and starts to get a little fussy. His instincts are strong from those early days after birth when we were attempting to nurse with each feeding. He stays calm with me, and I didn't mind holding him at all.

At 12:30 pm we got the call that the doctors were ready. The nurses carefully checked his vital signs while I held him so he would stay calm and wouldn't wake up. The nurses on his floor are really great and are all very sensitive to us, and to him. They let me walk him down to the floor where they do surgery and into the room where the procedure would occur. I was really glad to be able to hold him as long as possible. Of course Lea was with us, at our side. The room was larger than I expected, a huge table with a small baby blanket on it, full of medical equipment, large charts of a heart with "Johnathan N." written on the top, monitors everywhere, and several doctors and nurses getting ready for the procedure. They were sensitive to what we were doing, gathered around to take a look at him, and told us how cute he was. One gave us a "Congratulations."

It's a strange thing to sign release forms for a surgical procedure on your newborn baby boy and then hand him over to the doctors. They made it as comfortable as possible for us, and we appreciated that. He's 9 days old today.

Cath Procedure Rescheduled for Tuesday

2008-04-28T13:04:00.003-05:00

No real surprise, we got the call about an hour ago that the cath is rescheduled for Tuesday at noon. Such is life with these cardiac kids, I guess. Schedules always in flux. Somebody told me that you can look at it in positive terms that if you get rescheduled it means your child is not critical. Always looking for the positives in things and the small things to be thankful for.

Johnathan woke up at noon, we had to hold him off for about 15 minutes before we got the call that we were delayed, and he could have his bottle and feeding through the NG. Typical newborn stuff, he woke up fussy, ready to eat, I held him, was able to keep him quiet. He likes to lay on his side in front of me, on my arm, likes a little steady pat on the back, kept him calm and relaxed until we got the green light for the bottle. Was glad we got the news because I was no doubt on borrowed time. I tried another bottle style the bottle experts recommended, not much difference, he still gets pretty tired taking a bottle after about 10 minutes. Now all is quiet, he's sleeping soundly, doing fine.

Cath Procedure

2008-04-28T11:12:00.003-05:00

The cath is tentatively scheduled for 3:30 this afternoon. I will update here if it changes. Just like they do with adults before surgery, they have asked that Johnathan not be fed anything else until after the procedure. It should get real interesting around here at about 12:30 when he will probably wake up looking for that bottle and we can't give him one.

The doctors are optimistic, the surgery is not that invasive, they extend the cath up through an artery in his thigh, much like they would do with an adult cardiac patient. If all goes well he will be back in his room later today. Plans may change, but for now that's the plan. He's sleeping peacefully in his bouncy seat with the vibration going. Lea is home getting some much needed rest, she will be here later.