As I mentioned in a previous post, we are going to have a memorial gathering for Jonah this Saturday, April 4th. We will not be having a "service," we simply want to have some time set aside so that we could share our memories of Jonah with you and honor his life. Here is a link to his obituary: http://www.cressfuneralservice.com/a-life-remembered/1112/ which has all the details of the service. If you happened to have seen it in the Sunday newspaper, his name was incorrectly printed; it should have been listed as "Carlson, Jonah Hauser."
With that in mind, Kelly and I wanted to share the whole experience of his day, as well as write it all down so we don't forget it. Here is my version of his big day, which we will be happy to share with you next Saturday. I know it is long, but we wanted to share the whole experience of his big day.
Jonah's Big Day:
The day started as I did not want it to, with Evan waking up at 4:45 for a guided trip to the bathroom. After taking care of business, I went with him back to his room and tried to convince him to go back to sleep. After about 45 minutes he seemingly nodded off and I let him be, hoping to catch a little more sleep before starting the day. Kelly was awake by this point and writing in her journal, so we talked for about 20 minutes until Evan woke up again. That was official start of Jonah's birth day, as it was clear none of us were getting back to sleep!
The rest of the morning went according to plan: we dropped off Evan at my parent's condo around 8:45, chatted a little, and then headed off to the hospital. We got there around 9:40 and got Kelly registered and checked into her room. She got the usual pre-surgery treatment of an IV, a check of her vitals and we were paid visits by nurses and doctors that would take part in the surgery. Around 10:45 I ran down to the cafeteria to scarf down a sandwich and a cookie, making sure I had enough energy to last for the next few hours.
I got back to the room about 11:10, and then family started to show up at the hospital. We got them settled in the waiting area and I went back up to Kelly's room to sit and stare at the clock. The surgery was scheduled for 12:00, and everything was still on schedule, as we were told. Around 12:15 we got the call, and we headed down to the 4th floor where the surgery would take place. We were led to the recovery room, where she would go after the c-section, and we talked to the doctor and a few nurses about what was going to happen. Kelly was then taken into the operating room to get prepped for surgery. I stayed in the recovery room, putting on my hairnet, mask and show covers.
In the 15 minutes or so that I waited in the recovery area for the surgery to start, the Neonatologist stopped by and we talked about options for breathing support after Jonah was born. We agreed that if he was stillborn, or passed away quickly, that we did not want him resuscitated. That seemed like a unfavorable option given the fact that we knew his lungs were small and that his kidneys would most likely never function. We also agreed that if the initial evaluation indicated that he was in bad shape, we only wanted breathing support in place long enough so that we could spend a few hours with him in the recovery area to take pictures and say our goodbyes. The final option we talked about was to take him to the NICU if it looked like he might make it for a while and then we could sort of go from there and let him guide us down the right care path.
After what seemed like an eternity, I was led into the operating room and taken back to sit by Kelly. She was hooked up to an IV and she had been given the spinal block in preparation for the surgery. There was also a blue curtain just past her neck to prevent us from seeing the action. As the time passed, we made nervous small talk with the anesthesiologist, asking him silly questions about all of the equipment. He was a very nice person, and was very sympathetic to what was going on. As I did during the wait for Evan's birth, I bowed my head and recited the Lord's Prayer to myself. I don't know why, but at both births it just came to me and it felt right.
After about 10 or 15 minutes, I could see that Kelly was being shifted around a little, so I knew that the time was near and Jonah was about to see the world for the first time. The time was now 12:50. After a few more seconds, I heard a nurse say "Hi, Jonah," and then the unexpected happened. We first heard a couple soft cough-cries and then he really went at it. This kid did not come into the world with a whimper, it was a loud cry almost as if he was saying "Do you worst, world, I am here to fight!" Kelly and I were both a little shocked, given our expectations, but it brought joy and pride to our hearts to hear him. I had the same feeling of joy I had when Evan was born, and we both cried the tears of hopeful parents. This was the first time in a long time that I entertained the thought that he might actually make it for a while.
After about a minute, I asked if I could see him and one of the nurses said "yes," so I went back to the warmer where he was being evaluated. It is interesting to look at a picture of my initial reaction because I am holding my hand over my surgical mask as if I was trying to cover my mouth. I was shocked at what I was looking at, and how it was making me feel. He was perfect in every way, so beautiful and so much hair! The picture shows that love at first sight really does happen.
The other thing that I noticed was that his whole body had a blue hue to it, telling me that he was not doing very well at the moment. The doctors and nurses were huddled around him, working very intently to give him breathing support, so I decided to go back to Kelly to give her an update.
I talked to Kelly for a little bit, telling her how beautiful he is, and we were both nervously excited because of how hard he cried and from the updates we were hearing from the other side of the room. Then the Neonatologist came back and gave us the news that we had hoped so long to hear. Her words were "I thing he's got some lungs!" That put both of us in a happy place, and we cheerfully agreed to have him brought to the NICU for further evaluation and monitoring.
Things got a little crazy after that and I was starting to feel very excited. I went back to look at him again and he was starting to look more pink and he was fighting the mask a little bit as they were trying to put it over his face. That made me smile a little bit; I was happy to see the fight in him.
I went back to talk to Kelly again and we agreed that I should go with him to the NICU instead of staying in the operating room with her. So I left, being advised that I could not come back to the operating room, with a little hop in my step thinking that my little boy was going to possibly make it for several hours to a day or two. On my way out, the nurse handed me my camera to take with me.
My next stop was the recovery room where I grabbed the personal items we had left there in case our time with him was short. It was the bag we brought with the video camera and the teddy bear along with Kelly's robe, in case the only time we had with him was in the recovery area. I waited for a few minutes with the nurse, and then Jonah came out with his entourage of doctors and nurses, and we headed to the elevator.
The next couple hours are a blur to me. I remember when I first got to the NICU that there were several doctors and nurses around, and the room seemed awfully full. For a little while I stood back and watched them working on Jonah, trying to decipher what was being said. They were working on him quite intently, but he looked like he had turned more pink than blue by that point. They were also going to give him an IV and order a chest x-ray to see how well his lungs had inflated. The neonatologist also said that if things go well with his breathing and the x-ray, that we should also check his kidney function just to see what he is up against.
The doctor also told me that he may be with us for a couple days.
I decided at some point to go down to my room and change out of my scrubs, so I headed downstairs to Kelly's hospital room. When I got there, I saw a piece of paper with a butterfly on it had been taped to the door. The hospital does this to indicate that the family has lost a child. I asked the nurse with me to take it down, saying "this isn't over yet," and she took it off the door. I also sent a text to Twitter at 1:11 PM to let people know what was going on: that Jonah was a fighter and he may be with us for a while.
Right after I changed, one of the nurses and I made a decision that I will always be grateful for. The photographer from "Now I Lay Me Down to Sleep" had arrived, and we had a discussion about whether we wanted to take pictures that day or wait for Saturday when things had calmed down a little. By every indication, it seemed like we had more time and it may be easier to take the pictures the next day. For whatever reason, we decided to take the pictures that day. That is what Evan would call a "good choice."
So I got changed and headed back up to the NICU. By that point, they had decided to try a CPAP machine (similar to the one that people with sleep apnea use) to give him some more breathing support. I watched him for a little while, noting that he was still fairly pink. They were about to put the IV in, which I did not want to watch, so I went down the the recovery room to talk to Kelly and give her the good news. It was probably around 1:30 by this point, and things were still going well so I went to the waiting room to talk to my family. I gave them the news, and invited them up to the NICU, but I was reminded by the nurse that they were still working on him so we decided the better option was to have them hang out in Kelly's room since it was closer to the NICU and they would have some privacy there.
Once we got everyone settled, I went back up to the NICU to see how things were going. The CPAP machine did not work because, as they found out, there was a blockage on one side of his nose. The option they wanted to use at that point was to "intubate" him, which basically means that they wanted to put a tube in his throat to put the air closer to his lungs. This was something that I had hoped would not be necessary in the days and weeks leading up to his birth, but seemed like a good choice at the time to get him stabilized. The doctors and nurses were in high gear at this point, and I really did not want to watch, so I went down to talk to Kelly and let her know what was going on. I could not find my camera at this point (got misplaced in all the excitement), so after I was done talking to Kelly I went back to her hosital room where it was quickly found.
It was now around 1:45 and I headed back up to the NICU where I saw the nurse and photographer in the waiting area. I talked to them for a minute, letting them know it would not be long before the photographer could come in. Then I went in with the nurse to get an update on Jonah. When I got to his room, the neonatolgist started talking to me in a slightly different tone from before , and said that she wanted to show me something. She pointed out that Jonah's chest and abdomen were flexing quite a bit while he was breathing, which she told me meant "small lungs." She also pointed out on the monitor that his oxygen saturation level was around 40, and they like to see it be around 80.
She then took me into the central part of the NICU to look at his chest X-ray. You know things are not going well when a doctor tells you "let's look at a normal X-ray first." So she showed me a picture of a normal child's lungs and then Jonah's. It was a big difference, and I could see how small his chest was compared to his abdomen. She also showed me that it looked like the top two lobes of his lungs were not inflated. She was not sure at that point if it would help to "back out" the tube a little bit to help inflate them, but she also told me that it was possible that those lobes just never developed. She said she would send them over to a pediatric cardiologist to get his or her opinion.
I will never forget what happened next. We went back to Jonah's room to spend a little time with him and take some pictures. At some point the nurse asked the neonatologist if they should push to get Kelly out of the recovery room a little sooner than normal so she could spend a little more time with Jonah. The neonatolgist said something to the effect of "I think it would be a good idea to bring her up sooner." It broke my heart to hear that, because I knew that he would not make it very long. It also hurt me to no end that Kelly would hear this news as well, and her heart would be broken. It was probably a little after 2:00 by this point.
I decided that this may be my only chance to be alone with Jonah, so I took some pictures of him and had the photographer take a few pictures of us together. I took a few close-up pictures, realizing that I was unable to get a close-up shot in which he was not grimacing. It was clear that his situation was grim and he was now really struggling. So, I spent some time just looking at him, analyzing his features and trying to force myself to remember every little bit of him.
After a little while, my family started to come in, starting with my parents and Evan. Evan was reluctant (shy) to see Jonah, but he is also easy to bribe at his age so I reminded him that we brought a teddy bear. He got over his hesitancy and went into the room. He immediately went over to the window to play around with the things we had brought and whatever else was available for him to play with.
Kelly was brought into the room shortly after my parents arrived and I could see in her face that she was sad. I asked everyone to leave the room so I could spend a little time with the two of them, and get Kelly up to speed on what I knew. By that point the excitement had passed, and we were now focused only on spending as much quality time with him as we could. It was around 2:15 by this point.
The next hour and a half were spent with family and Jonah, with everyone getting a chance to hold him, love him, and say goodbye. There were a lot of tears in the room, but I was feeling something different than sadness at that point. I was sitting on the couch by the window with Evan and one of the nurses asked me how I was doing. My response was that "I am so proud of him." In retrospect, I had gotten what I had hoped for. I loved him unconditionally without fearing what was to come.
Around 3:20, we had one of the hospital chaplains give a blessing with all of us in the room. Thanks to a tip from a friend who had been through this earlier in the month, I had the presence of mind to ask the photographer to video tape it. Another "good choice."
There was no point in denying his future at that point. They had backed off the setting on his breathing tube (to increase his comfort) and he was starting to get that blue hue again. As the neonatologist told us would happen, something clicked in my mind and I knew it was time. I asked everyone for some privacy again and I went over to talk to Kelly. Her words were "I think it's time." We both knew at the same time that he had fought hard, but the world was a little too big for him. Kelly's nurse was also chomping at the bit to get her back to her room to they could monitor her a little better.
We asked the doctor to remove the breathing support.
After a short time, we left to go down to Kelly's room with Jonah. The doctor and nurse kept him on oxygen on the way down to make sure that he did not pass away in the elevator, even though they thought that it was not likely to happen. I am glad they did.
We got back to Kelly's room around 3:50, ready to spend whatever time we had left with him - just the three of us. We did not get much of a chance because he passed away about 30 minutes later - snuggling with his mom. We kept him in the room with us for the evening, wanting to have him with us so we could say our goodbyes before he took the next step in his journey.
Sometimes babies are born with serious heart valve conditions that can be surgically corrected, either through donations from another child or by using mechanical valves. The issue with the mechanical valves is that they do not grow with the child, so future surgeries are pretty much guaranteed. If a donated valve is used, however, it can grow with the child, reducing the risk of future surgeries and the associated complications. The need for these valves is immediate, as the incidence of heart issues in babies is quite high.
After we received the prognosis that it was unlikely that Jonah would survive, Kelly and I decided that we would like to donate whatever organs would give another child a chance at a better life. We found out, after contacted the organ donation group, that heart valves were the only option given his condition and his age.
What came next would turn out to be the hardest thing I have ever done. Before we left, I held him and told him three things. I told him that I loved him. I promised him that I would be the best daddy to Evan that I could be. Lastly I told him that I would never forget the fight he put up. As the nurse came in, I gave him a kiss on the cheek and started the walk that I will never forget. The procedure was going to be on the same floor, in the room where circumcisions are done, and I wanted to carry him there.
We got to the room, which was locked, but I could hear some talking and commotion behind the door. The nurse knocked, and someone dressed in dark blue scrubs opened the door. He shifted a cart behind him and stretched out his arms to take Jonah from me. As I gently put him in his arms, I took one last look at his face and started to cry, as I thought this may be the last time I would ever see him. The man said to me -- "I am so sorry. God Bless you." As I turned around, I felt physical grief for the first time. As I walked back to the room, I was crying so hard that my neck and shoulders were shaking, and I remember reminding myself to breath. It was not easy, feeling as if I had been punched in the chest.
Jonah was gone.
Epilogue:
It has felt like one long day since he came into our lives, but we are doing OK having felt joy and sadness in ways we could have never imagined. We miss him terribly, but we are both immensly proud of our little boy. He went through a lot in his life, even before he was born. He came into the world fighting, and passed on gracefully and peacefully knowing nothing but love and comfort from his family.
We should all be so lucky.
