September is NICU Awareness Month

Our NICU (neonatal intensive care unit) story is pretty atypical. Imagine being so happy to be somewhere that most people are terrified of. That pretty much sums up how we felt most days.

We got the call that we had been chosen to be the parents of the most perfect human on August 7th, 2019 and we went to meet him the following day. We dropped everything to be with him, including a long-awaited trip to South Africa that we were supposed to leave on that following Saturday. Obviously, having a baby and being there with him was WAY more important.

Sumner was 42 days old at the time. The adoption agency had decided to wait until he was more stable to start the process of finding him parents. Not only was he born at 27 weeks — 13 weeks early — he was also incredibly sick. We were told that the earliest he would go home was the beginning of October, but he didn’t actually get discharged until the end of November. In all, he stayed 152 days in the NICU and we were with him 110 days of it.

I hardly remember our first few days. They were a whirlwind of driving one hour each way, prepping food for us so that we wouldn’t have to eat out much, and learning the ins and outs of Sumner’s care.

His biggest issues were breathing, retinopathy of prematurity (ROP), and eating enough to sustain adequate growth. Due to being born so early, Sumner was on CPAP when we met him. He had to wear the “scuba Steve” mask over his nose and he absolutely hated it. Unfortunately, he was chronically tachypneic and would desaturate into the 60s (or lower) very quickly. I didn’t realize that the middle number on his monitor was his respiratory rate for a couple of days because that number usually matched or was close to his oxygen percentage. Talk about fast breathing!

Eventually and with the help of a long-term course of steroids, the doctors were able to wean him of the CPAP and on to high-flow oxygen. Weaning his oxygen down was a long and slow process. Often we would take two steps forward and one step back. There was one particularly tough day when we had to go back to the “scuba Steve” mask instead of the RAM cannula because he wasn’t able to maintain his pressures. He’s been out of the hospital for nine months now and I can still hear the song of the CPAP machine — do do do… do do.

Due to his low birth weight and prematurity, Sumner met the criteria for weekly ROP screenings with a pediatric ophthalmologist. These exams were awful! The nurse would dilate his eyes and then the doctor would come by and do her thing. She would use a metal speculum to hold his eyes open while she did his exam. The process usually took longer than usual because we would have to give Sumner breaks for his oxygen saturations to come back up. Eye day was the worst! However, because of the early checks, they were able to identify issues with his eyes pretty quickly. He had Avastin shots in both eyes in late August. Avastin is a chemotherapy drug that has been found to help slow the growth of blood vessels in the eye. For us, it was a stop gap measure because we knew that he would eventually need to have his eyes lasered, but he wasn’t stable enough yet for that procedure.

When Sumner was 42 weeks gestationally — two weeks past his estimated due date — we were finally approved to start bottle feeding him. Due to his prematurity and chronic lung disease, we followed the SINC (safe individualized nipple competency) protocol. With this system, the idea is to gradually increase the percentage of each meal offered orally and slowly decrease the volume put through the feeding tube. I cannot tell you how happy we were to start offering the bottle because it was one of the last things that we needed to get a handle on for discharge.

Unfortunately, Sumner started to plateau at around 60 to 70 percent of his meals orally and his doctors suspected that he might be silently aspirating. He had a swallow study on Halloween of last year. It was a fairly surreal experience. His nurse was dressed as a wolf, I had on my avocado shirt, Sumner was an egg, and the entire radiology team was dressed as trolls. It was a lot to handle. Thankfully, Sumner was in a compliant mood and they were able to get a good look at his swallowing. Based on the findings, he needed to have nectar thick formula in order to have a safe swallow.

The hope was that with the thicker formula his volumes would take off and he would become 100 percent oral. However, after a couple of weeks, it was apparent that it wouldn’t be the case. Since the only thing keeping him in the hospital at that point was the feeding issue, we decided to get a g-tube so that we could work on it at home. We also decided that we would go ahead with the laser eye surgery at the same time so that he wouldn’t have to go under general anesthesia more than necessary.

On surgery day, the adoption agency sent a representative to sign all of the consent forms. Since they were still technically his guardian, we weren’t allowed to sign the consent forms even though we were at the hospital every day and worked closely with his doctors to make sure he got what he needed. It was a strange limbo situation.

Surgery day was nerve wracking. The team came up to get him and whisked him away. We weren’t allowed to go with him so I mostly paced around his room until they came with an update. The gtube part of the surgery went very smoothly. The only odd finding was two hernias that we’ll need to get fixed in the near future. The laser eye surgery also went very well. Since Sumner was intubated and under general anesthesia, we knew that it would be a while before he came to and decided to run out for dinner. As we were coming back, we found three nurses in his room working on extubating him because he had decided that he was all done with it. I spent the rest of the night cuddling with him and making sure that his nurse stayed on top of his pain.

We were discharged the following Monday. The original plan was for Tuesday, but we were supposed to get a huge snow storm and I had no desire to drive two hours home in the snow with our infant. The doctors and nurses moved heaven and earth to make sure that we could go. On discharge day, our adoption caseworker came to the hospital and did all of our placement paperwork with us. Once that was done, we were legally and financially responsible for Sumner.

The drive home was a bit harrowing as the predicted snow storm came early. Thankfully, we got home in one piece and the oxygen supply company was able to come out that night and get everything set up. The roads weren’t passable the following day as we managed to accumulate over a foot of snow.

We will be forever grateful to his NICU care team. Many of his nurses took care of him before we became his parents and we’re so glad to have them still in our lives. The love and affection that they showed him made it easier for me to sleep at night and for the rare occasion that we couldn’t be there. We knew he was in good hands. We hope to visit with them next summer during the annual NICU picnic, assuming that COVID is less of a worry by then.

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