Surgery

Surgery was something we had been prepping for since Charlie’s diagnosis, but it didn’t make it any easier. We got to Charlie’s room early to spend time with him before we couldn’t. He was still on ECMO and very sedated, so there wasn’t much we could do besides be present with him. All we could do was touch his tiny body in hopes he would know we were there. At this point, even touching him made me nervous to mess something up. There were so many lines and tubes. Previously I had been very comfortable with this being an ICU nurse, but being MY baby with them was terrifying. He had the BEST nurses, and they wanted to make sure we were involved in anyway possible and felt comfortable. They made him name signs, foot print art, and anything we needed to get through the days and nights. With a lot of help from them, we were able to change our first diaper! Just doing that was a task to avoid pulling lines or making him uncomfortable. There are so many things most parents probably get sick of doing but we are so grateful for the smallest things that make it feel a little more “normal”. He still hadn’t started any feeds because they didn’t want his stomach to squish his lungs anymore, but we were still able to give him breast milk on swabs. It continued to be one of his favorite things. Even sedated he would suck on them and they gave him comfort. Breastfeeding was one thing I was SO excited about, so this was the closest I could get to that bond and it made me so happy that he liked them.

Charlie’s room started to fill with people and supplies. Because he was so critical, they turned his room into an operating room and did his entire surgery in there. He was moved over to a solid metal table, and it was our time to go. We gave him little kisses on his head and told him we loved him. Leaving him was hard, my heart broke as I stepped out of his room. I was terrified this would be the last time I’d see him. I cried to the waiting room and hugged our families waiting for us.

The wait was unbearable. We knew it would be a big surgery. Our surgeon told us it could possibly take up to 6 hours depending on how things were going. We sat around a table, occasionally getting up to pace. No one said much. No one could eat. The anxiety around us was palpable. After what felt like days, our surgeon came out. His surgery was done. She told us he did great and was stable. He had only 20% of his diaphragm. Most of his abdominal organs were in his chest including his liver. She was able to use part of his own muscle to close the diaphragm, so she was hopeful this would allow it to last longer and grow with him. But, she was concerned with his lung size. His left lung didn’t “pop” open like she usually likes to see, so it was hard to gauge how much function it would have. All of Charlie’s scans thus far weren’t concerning for lung volume, so this was worrisome.

We were able to go back and see him very soon after. He was very sedated and on pain medicine. They had to quite literally dig all of his organs out of his chest and put them back in his abdomen, so pain was definitely expected. What had previously been a flat stomach was VERY poochy. Some babies have to have their incisions left open because there isn’t enough room for the organs, but Charlie was able to be closed. He had a large incision from his left side to his belly button that made a right angle straight up to his mid-abdomen. He also had a chest tube and a drain, so more tubes we had to learn to navigate around. Seeing him doing okay after surgery was yet another rush of relief. I cried so many tears- happy, sad, scared, and every emotion in between. From starting ECMO two days earlier and then undergoing a major surgery, I can’t explain the weight that had lifted but also the rush of other feelings. He had made it through big things, but we weren’t in the clear yet. He had a long road to recovery. Bleeding was a major concern due to ECMO, but thankfully his drains never had too much blood and his incision healed beautifully. It’s a constant reminder of how far Charlie has come.

Charlie’s ventilator was on “rest” settings to give his lungs a break and optimize healing after surgery. Because of this, his lungs were completely collapsed on his x-rays, so we had no idea how they were going to look. But all his other scans looked fine, so we were optimistic. During our pre-natal appointments, we were told his hospital stay would likely be 4-8 weeks maybe 12 at the most. So we were pretty pleased that he had gotten through surgery so early! We were hopeful that now that surgery was over, his lung opening would start soon and get off ECMO within the next week. It was scary knowing he still needed ECMO, but we knew he needed it for recovery and we were starting to see the light at the end of the tunnel (for now).