Week 3

 At 3 weeks, Charlie had pneumonia and his chest x-ray was looking worse. The team decided to restart his "rest" settings on the ventilator while his antibiotics started to kick in. This made the ECMO pump do all the work and gave his lungs a chance to heal. It was kind of nerve wracking because while on rest settings his lungs would look completely collapsed on x-rays, so we had no idea how they really looked. They did an echo that looked at his heart, and we could see it was strong. However, he was having high blood pressure in his lungs. This was expected because they were collapsed, but it's also an issue that is common in CDH. It was hard to tell if the high pressures were caused by the CDH or the rest settings, so it was another waiting game to see if it resolved on its own. Charlie also got to start feeds for the first time! I was so excited that he finally got to start taking in breastmilk. There is so much evidence on how powerful breastmilk can be in healing, so I thought this was a great step! It would also help Charlie grow, which we had been told is one of the best treatments for CDH. But, like most of his hospital stay, it did not go as planned. In his chest tube, he started having milky drainage. The team told us he had a chylothorax. Chyle is a milky liquid that consists of lymphatic fluid and fats. Sometimes during surgery the lymphatic system can be damaged and allows they chyle to leak in between the chest wall and the lungs. Charlie still had a chest tube, so luckily that is where it drained to. Unfortunately the best treatment for this was to stop all feedings while it healed. It felt like such a step back. It was the one thing I could provide for him and it was gone. I just wanted to provide him anything and I knew how important nutrition was for his healing and growth. So I just kept pumping through it all. Our stash of milk grew fast, but I knew he could use it long term so I never stopped (even on the hardest days). 

Through everything, Charlie was doing okay. He started opening his eyes more and tracking our voices. He started to initiate his own breathing. He was sucking a pacifier and his breathing tube, got the hiccups, and taking breast milk swabs. He was mostly a normal baby, just with extra support. During the third week Zach had to go back to work. The first day he came to the hospital after work, Charlie turned his head when he heard Zach's voice. He really knew who we were. For me, I was still so depressed. I initially got to the hospital first thing in the morning and was always present for rounds. But once Zach went back to work, I slept more and slowly got to the hospital later everyday. I was exhausted from pumping through the night, scared of what was coming, and felt so isolated. Charlie moved rooms during this time because he wasn't tolerating noise. So we were in a very large room with no windows or other families around. He always had two nurses, so I got close to them but things were still hard. It was nice having so much space, but I felt so isolated. People were reaching out for updates and to check in, but I didn't have the energy to reply most days. It was hard to explain what was really going on, so it was easier not to. I was really lucky to have such a supportive husband and family living through it with me. I cried a lot and there was always someone standing by with open arms. 

After being on antibiotics for a few days, they decided to start recruiting Charlie's lungs again. They slowly increased the pressures to open up his lungs. There was a lot of back and forth between being open and collapsing. The team decided a bronchoscopy (scope into the lungs) would be good to get extra secretions out. Unfortunately, pulmonology did not feel that a bronch was necessary. ENT was consulted and they were able to do a short bronch and pulled out a mucous plug. This seemed to help some and he was taking in deeper breaths. Unfortunately, he continued to get darker and darker yellow. It was hard to see sometimes because the lights were dimmed, but during his bronch they turned on all the overhead lights on in his room. And WOW he was yellow. The liver team was consulted for recommendations. Luckily his high bilirubin was NOT the kind that could effect his brain. They said it would resolve him starting feedings and pooping more regularly. It would take some time, but he eventually returned to his normal skin tone. 

Most babies on ECMO can have problems with the circuit that require parts of the tubing to be cut out. At 2.5 weeks on ECMO, the nurses said he was one of the easiest ECMO courses because he hadn't needed any adjustments. But because it had been so long on ECMO, they wanted to give him a clean circuit to reduce the risk of complications. For this, Charlie would have to come off of ECMO while they made the quick switch. My anxiety was high. The team let me stay in the room during the procedure and I watched his vitals the entire time. They clamped off his ECMO line and unhooked it. He was off of ECMO for a total time of 58 seconds. It doesn't sound like much, but this was a short test to see if would tolerate it at all. He didn't do perfect, but he did really well! We were optimistic that this meant he would be able to come off completely pretty soon. Unfortunately, stopping the ECMO for a short time caused his lungs to get irritated and "white out" on the x-ray, but this was expected. That night we used the stethoscope to listen to his lungs for the first time. I've worked in an ICU, but I've never worked with ECMO patients. When listening you could hear the strong swoosh of the ECMO machine. It was so strange to me! 

Like I've said, it is the smallest accomplishments that we celebrate in the NICU. At this point, Zach and I were changing diapers pretty independently. Something so normal for most parents became one of the few things we could do for him. As I was standing next to him preparing to change his diaper, I heard the first audible fart! It was so silly, but made me smile so big. It was a week of a lot of firsts. These were the things we were living for- the laughs, smiles, and a little bit of normalcy.