July was the best month we spent in the NICU. We added more nurses to our list of primaries, and even when our primaries weren’t working, we had more consistency with who would treat Evan. This made things so much better. We had become friends with so many people on the NICU staff that coming in every day felt even more normal than it had before.
Alex went back to work at the end of June, so I would sit with Evan by myself until he left work. I was nervous the first few days that I was by myself, and some days I just didn’t leave to eat lunch or take care of myself because for whatever reason being there by myself made it harder to leave him. Mom guilt is the worst. It got to the point that sometimes our nurses who knew me well would kick me out to go eat, and somehow they convinced me to get a pedicure one day. These people were our family. They knew what we needed and made sure we would get it. Despite my random days of not taking care of myself, we really had settled into a routine. We chose to find as much joy in our situation as possible.
July was basically a month of waiting for Evan to grow and gain strength enough to undergo surgery again. We played with some of his medications here and there to make him more comfortable, and he weened completely off of respiratory support. That was the best day.
We had a lot of fun with the Fourth of July. I decorated Evan’s carespace, and we were lucky enough to be in the best spot for watching fireworks! Maegan even worked a later shift that night, so she watched with us. It was so much fun. Then Evan surprised us on our anniversary later that week with his very first PO feed! We got the go ahead from his docs to attempt PO feeding up to 4mLs. With a lot of help and some patience, Evan took 2mLs by mouth that day! He didn’t do it again until August, but hey, a win is a win.
We were so excited to see him finally growing even if it was because we had to completely bypass his stomach in order to feed him. He seemed so much happier as well. Despite the new feeding system and two reflux medications he was on, we still had issues with vomiting. He would throw up his natural secretions which he has a lot of. We added a medication to attempt to decrease these secretions so he wouldn’t continue to vomit and choke on them. It definitely helped, but he was still throwing up some. This led our team to decide that Evan needed drastic measures taken to ensure any future ability to feed into his stomach. He would have a nissen fundoplication surgery when his G tube was placed. This surgery would wrap the top of his stomach around the bottom of his esophagus making it physically impossible for him to vomit or burp. Normally, they do not do this surgery on babies, but Evan definitely needed it, and it has been the best thing for him.
Evan still needed to wait a little longer to be big enough to handle the surgery, and the plan was to attempt feeding into the G tube with the hope that the nissen would solve our problems letting him tolerate these feeds. However, we knew that there was a good possibility he would need a G-J tube which would mean at least an additional six weeks in the NICU. We accepted that would probably be our fate as Evan had proved to be quite the troublemaker up to this point. A G-J tube would do what his NJ tube was doing but through the port in his stomach. Unfortunately, they didn’t make equipment for it small enough for a baby Evan’s size, so that could have added even more wait time.
Meanwhile, everyone we knew on social media kept saying how Evan looked “so big” and “would be home in no time.” I hated that, but looking back, it was mostly my fault. I didn’t keep people updated on the details of his medical care at the time because we were so focused on staying positive and looking for all the joy we could find. But I do think there is something to be said for watching what you say to a NICU parent. Size is not the only thing that a preemie has to worry about. There are so many medical reasons a child would need to stay in the NICU. There are term babies weighing seven pounds or more who have to spend time there for tons of reasons. Later on I will be posting about how to care for a NICU family, so I will stop here for now.
We finally made it to the week of Evan’s second surgery attempt. They planned to intubate him up in the NICU ahead of time to have as many people present and as controlled of an environment as possible. Alex called me on his way from work that night which wasn’t normal for him. He had been in a car accident and was being taken to the ER downstairs as a trauma alert. Cool. Just what we all needed. I told Amber, one of our day primaries (thank God she was there that day), that I had to go downstairs to meet Alex and see what was going on. His truck was completely totaled, but luckily he was fine– just some bruises and muscle soreness. I think I had been holding my breath until I saw him. Still, this was not how either of us envisioned the night before the scariest day of our lives going. The team in the ER was incredible though. They knew our situation so they got Alex discharged as quickly as possible so he could come up and see Evan before we had to go home to sleep.
I think I called to check on him at least three times that night. It was to the point that I remember Addie (one of our night primaries) told me to just go to sleep. I love her. The next morning Amber texted me once he was intubated so we wouldn’t come and have to get kicked out for it. That would be more stressful. He did great. That was the scariest part of this surgery given all that happened with his first intubation in June. God bless that NICU team and our anesthesiologist (she’s the only person we will allow to put Evan under). The time came for them to take him down. Alex and I prayed over him, and they wheeled him away. I had never felt so scared in my life. I immediately started crying and Amber gave me a hug which made me feel at peace so quickly somehow. I told you–they are our family. We now had about three hours to wait for him to finish. I forced myself to fall asleep so it would go quicker. They brought him back up and told us that it went great. Now we would just need to monitor him, keep him comfortable, and wait for a safe time to extubate him.
We were able to extubate overnight that night, but he was struggling so much with pain management. He ended up needing two different narcotics to stay even remotely calm. I felt so bad for him. Post-op is definitely worse than waiting while he is in the OR for me at least. I hate seeing him in so much pain knowing I can’t do anything to help it and that he doesn’t understand why it’s happening. He had four incision sites plus the G-tube port that were all tender. I was afraid to touch him because I knew I would make it worse. After a few days, we were able to decrease his pain meds significantly. But then he started having bradycardia spells with his oxygen desaturations. Super fun. These thankfully stopped at five days post-op.
We started attempting to ween him onto feeds into his G-tube. Within a week, he was at full feeds and was tolerating them! It felt like a miracle. We would not need the G-J tube! He was doing so well. He wasn’t throwing up and choking all the time. He seemed truly happy for the first time in his whole life. It was like we had a whole new baby.
We were quickly learning how to care for Evan’s G-tube and getting ready for managing it at home. All of a sudden people started throwing out worlds like “discharge” and “home” to us. It had felt so far away, and now it was actually getting close. I honestly didn’t believe Amber when she first told me we might go home soon. Then I panicked over all the stuff we needed to do to be ready.
Tomorrow, I will tell you all about the emotional roller-coaster that discharge was for us. If you’re one of Evan’s NICU peeps, you are probably laughing right now remembering it.