May 1, 2024

Happy half-birthday David! There’s just so much I want to say and so much emotion bottled up into today, but it’s also getting late. One year ago, we were likely thinking today would be his first day eating some purees, which would probably be sweet potatoes like his siblings. Six months ago we did not anticipate seeing this day. We were hoping and praying he’d survive an hour, but had absolutely no anticipation of him living past 5 months. So here we are today – a day we never imagined we’d be celebrating with David, let alone with so many other people. David is incredibly loved, and had such a wonderful day full of smiles and excitement. 

David started off today with a party by child family life, which included Fern, her mom, a few other child life specialists, and the music therapist. They arrived at his door bearing a balloon and some gifts. David was eager to see Fern who gave him some kisses. Then they sang to him and he opened his gifts. He received a super cute outfit and some soft toys. He seemed to love all of it and he wore his outfit after a bath later. Anna is hopefully excited to see David wearing pants since she often informs us that David is not wearing any pants. Fern also would like to be David’s other God-mother, and we were eager to accept. He now has the coolest God-parents: T-Swift and Fern. It doesn’t get better than that. David’s outpatient cardiologist also stopped by today to wish him happy half birthday, as it is a momentous occasion. 

After his party, David worked with speech and did some paci-dips. After that, he played with OT. They decided to put in some referrals for him to be seen by PT now and a baby psychologist. This makes David happy since it will allow him to make some more new friends in the coming days, until he finds out that they will push him to do more work still. 

Early afternoon, a member of orthotics stopped by, and David got fitted for his helmet. David did not like this, but the technology to get the shape of his head is pretty amazing. His head is not as flat as it looks, and things look good that it shouldnt have much issue being reshaped. David’s helmet should arrive in about two weeks. After he got his helmet fitted, David got a respiratory treatment before finally getting a bath. Sometime during respiratory, David pulled off the scab that was on his chest from his chest closure. That was the last thing remaining, so I guess it’s all healed now. He does have a small, hard, little ball lump in his chest, which it turns out is a wire poking through that was used to close his sternum. We’ll just keep an eye on it for now, because I’m not sure if there is anything else they can do about it at this point. 

Once David was clean and in his new outfit, Fern and her mom came back, and David got to walk Fern in his wagon. He walked her to the room of another friend that she needed to help. After saying goodbye to Fern, he continued on his way. In all, David made 3 laps around the unit – that’s a new record for him. He wasn’t too excited when his walks came to an end, but then he did get some snuggle time in. Eli has expressed some interest in holding David earlier in the week, so after he was done eating dinner, he got that opportunity again, which of course then Anna wanted to hold David as well. 

In all, David had a fun filled, exhausting day. His respiratory treatments were scaled back to 3 times daily from 4 times daily. He also got his high flow taken off and is just on room air. Finally, his last change for the day was his milrinone was reduced, while holding steady on his fortification from yesterday. As we know from David, changes need to be small and we need to avoid changing too many things so we know what change causes any differences we see. It’s unknown how he will handle his decrease in milrinone. The milrinone is currently helping his heart in so many good ways, but it is an IV medication, with a very long half life. This evening we may start noticing any effects of reducing it, which is why he’s in the ICU where he can be monitored closely. We will learn more about his heart as he’s able (or unable) to come off of the milrinone. Today was step one – which is just back down to the dosage he was at last week.