Time moves strangely while in the hospital. To help remember when things happened, we built our timelines around what bed space Charlie was in. Charlie moved rooms handful of times while at Children’s Mercy, and we both found that to be the easiest. While Charlie was on ECMO, he was in a very large room called the treatment room. He was very sensitive to sound and had A LOT of equipment, so a private large room worked best during that time. When he came off ECMO, he stayed in that room for about another week to make sure he remained stable.
Being off ECMO was such a big thing, but Charlie had a lot of things that needed to get better. There was a lot of back and forth changes on the oscillator. There were some days that felt like progress, and others felt like big steps back. It was all about finding a setting that Charlie liked. He was the boss. During that time, they were also working on getting Charlie off the nitric gas that was helping keep his pulmonary hypertension under control. They started the weaning process and told us that kids usually do well in the beginning but have a hard time coming off completely. Of course, this was the case for Charlie. They had to backtrack all the weans and go back to where they had started. After restarting the nitric, his blood gases improved, so it was clear he still needed it. He just wasn’t ready yet.
Of course his respiratory status was his biggest issue at the time, but he was also on sedation that needed to slowly come off. Charlie was on a medication called Versed. It’s something our team did not want to keep long term because there is literature that says it can possibly cause neurological complications throughout development. His neuro status was something we had already worried about between ECMO, long NICU time, and low oxygen so we were all for getting him off Versed. Unfortunately, with all the other changes happening, Charlie got agitated. We were asking him to do a lot, and he needed a break. He was restless in a way that was unsafe, so his sedation had to be increased instead of decreased. This was hard for me. Agitation caused his oxygen to be low and put a hindrance on us to be as active in his cares. All I wanted was to hold him and at the beginning of the week it had been a discussion, but now it was off the table. As soon as I felt like he was making progress, he was knocked back down. It was so discouraging. There was a day I sat in his room all day, so upset but staying distracted. As soon as Zach got there from work I broke down. Charlie’s nurse felt so bad that I had been so upset all day and she didn’t know. But there were days where I didn’t need anyone else but Zach. He truly held me together through the hardest times. It felt like I could never be doing enough for Charlie. I read books and changed diapers, but comforting him was hard when I couldn’t hold him.
Through all the setbacks, I tried to focus on the positives. Charlie was able to have one of his surgical drains removed. It seemed small, but every tube/cord that got removed was one step closer to recovery! He was also started on feeds! Because of the chyle leak he had the first time, all the breast milk had to be skimmed until they were certain it was gone. The fat was removed just like skim cows milk and that made it safer. Pumping through his journey has never been easy, but knowing it can be so good for him I want to set him up for as much success as I can. To keep an eye on things, his chest tube had to stay in place for the time being. And just as the liver team had predicted, after getting off ECMO and starting feeds Charlie’s skin began to whiten. We really had no idea how jaundice he was until he wasn’t. He looked so much better, and the older he got the more he resembled Zach.
After we were told holding him would be pushed back more I was heartbroken. It had been over 5 weeks since delivery and the most contact we had made was just simple touches. At that time, it didn’t feel like my bonding with Charlie was affected but it was definitely taking a toll on me. Our last Saturday in the treatment room, my parents visited. They knew how hard it was on me, especially my mom. Only two people could be in his room at a time, so Zach and I waited in the waiting room while they visited. We had the same nurse who knew I had been having an hard week when I broke down to Zach. After my parents were done we gave them a big hug, and I could tell they were up to something. We went back into Charlie’s room and his nurse had a big grin. She had brought in a special oscillator chair and said I was going to get to hold Charlie for the first time. I could not stop smiling! She sad it broke her mom heart knowing I had never gotten to hold him. Thankfully, one of our favorite doctors was on service and he was all for it. He was one of Charlie’s biggest advocates for SO much of his care. He was there for some of Charlie’s hardest and best moments, and by the end of our stay we asked his opinion for almost everything. He was a large part in saving Charlie. It took 5 staff members, a special chair, kangaroo shirt, lots of tape, and patience but he finally made it to me. We only did skin to skin a handful of times because he’d gotten to an age where he didn’t like it much, but the first time was surreal. So many tears were shed from me, Zach, the nurses, and even his doctor was teary eyed with a big smile. I held him as long as we both could tolerate. It’s weird to explain, but part of me felt numb. I knew I should be happy, and I definitely was but something just felt off. Looking back, I know our bonding WAS effected by his NICU stay. Going home without a baby every night kind of made it feel like I didn’t have a baby at all. It was like I knew I was happy and he was mine, but it felt like I was holding someone else’s baby. After I held, we gave Charlie a rest day and the next Zach held him. In a way, that made me happier than when I held him. Being a dad has always been Zach’s dream, and his love for Charlie is so evident. Seeing them finally together and the happiness in Zach gave me peace.
During our stay, we started buying cute sheets for his warmer. It was important to us to personalize things to make anything feel homier. We were always asking our nurses for their opinions too because they’re the ones that have to look at his sheets all day. We had a nurse who we had really bonded with and knew she loved skulls. Skull baby blankets are hard to find, but we found some fun ones she could use and bought them. The next day we came in to a note asking to have her as our primary nurse. This meant anytime she was scheduled she would have Charlie. We were overjoyed! She was someone who knew Charlie and could tell when things weren’t normal for him. It was really important to have people who were familiar because they could sense when something was off much faster. She has also been one of Charlie’s (and ours) biggest advocates and cheerleaders. Leaving Charlie at night to go home was never easy, but when she was there it made us feel much more secure. Words will never be able to describe how thankful our family is for her. Buying skull blankets was one of the best things we could have done.
There was a lot of ebb and flow with treatment but we were optimistic. We had seen other CDH babies leaving, so we thought now that ECMO was over we were on the road to home. But it was just the end of the treatment room and the beginning of so much more.
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