Week 2

At one week old, Charlie was on full life support and had a major surgery that involved nearly his entire torso. At this point, I was just grateful he was stable. I knew that there was always a risk for things to go wrong, so my anxiety was constantly high, but I tried to be optimistic. One of the hardest things was leaving him. We decided for our own mental health, it was good to go home to sleep. Nearly every night in the beginning, I would stand next to his radiant warmer to tell him goodnight and cry. I hated leaving him. There was a part of me that felt like he would think I was abandoning him there and I felt horrible. I dreaded it every day and it is still so hard to be away from him.

The first day after surgery Charlie had his first small poop and we were so happy! That meant his bowels were in the right spot and things were finally moving, even if it was slowly. Some of the smallest things were huge progress. Charlie’s blood pressure was high after surgery, likely because of pain. So his pain medication was increased. Luckily, it didn’t stop him from waking up. That day Charlie opened his eyes a lot and was looking at us. I definitely cried. It felt so good to know he was there and he was okay. It was Valentine’s Day, and that was the best thing I could have asked for. 

Charlie did have some hiccups that week. He started having some shaking again, so another EEG was done. All the glue we had previously gotten out was back, but thankfully all the testing was negative again. Being on ECMO, anytime something was done to look at his brain I panicked thinking he may have had a brain bleed or clot. It was clear something was off because his heart rate was much higher than his normal, and it didn’t seem to be pain related. They did some testing and found out he also developed E. coli pneumonia and was started on antibiotics. I was very concerned that the E. coli could have come from me during labor, and I felt so guilty. But his team was fairly certain that it came from his intestines being so close to his lungs. Almost everything that went wrong, I always thought it was somehow caused by me. The guilt ate me alive some days, but I finally started to accept that these things were no one’s fault. It’s just how it happened. 

Since Charlie seemed to be recovering okay, they decided they would start working to open his lungs. They started breathing treatments and intrapulmonary percussive ventilation (IPV). This sends small rapid breaths into the lungs to help loosen mucous. It was really similar to the oscillator ventilator but for just a few minutes. The hope was that getting all the secretions out of the way would help his lungs open up more and get the E. coli cleared. Slowly over the next few days, his x-rays started to look better and his vitals went back to mostly normal. Before clearing his lungs, the volume he was breathing in on the ventilator was less than one. After starting all the treatment he was starting to get volumes up to two! They were able to decrease his ECMO settings because was oxygenating better, so we were hopeful that he would be able to come off soon. Things were really heading in the right direction. It was the start of removing lines and they were able to take one of his stickers off his forehead! Any extra of his face we could see was a win, even if it was just a forehead. The more we could see of him, the more jaundice he was. He was very yellow. Sometimes it wasn’t noticeable until we turned a big light on, but now looking back on pictures it was worse than we thought. Normal bilirubin was less than 1 and his was more than 30. ECMO was the major culprit. The red blood cells were breaking down and they considered doing plasma exchange if it had gotten any higher. His levels were stable, so they said the best treatment was coming off ECMO and starting feeding, but we weren’t quite to either of those milestones yet.

Charlie also got a roommate. They had been trying to avoid a roommate since he had so much going on and was sensitive to sounds, but his room was the last one open. He was still sedated and on pain medication, so he initially didn’t notice too much. He was still waking up and looking at us, but very little- maybe a couple of times each day. He was never really upset when he woke up. He would just look around for a few minutes and then go back to sleep like a normal newborn. I tried to savor it every time. I continued to worry that one day he would stop waking up, so I was so scared to leave his bedside. Anytime my phone rang, I would immediately get overwhelmed with panic that something was wrong. The first thing they would say when I answered is “Charlie’s okay”. His nurses were amazing with their support. They gave me space when I needed it and a hug when I needed it even more. Knowing they were with Charlie 24/7 made being away a little easier, but I still worried. Things had been going okay, and I knew we were bound to have more hiccups but I was confident in the people taking care of him.