January 12, 2024

We’ve been keeping busy since last week. The older kiddos have resumed activities which we had put a pause on when David was born. With the uncertainties of where we would be on any given day and the busyness of the holiday season, I didn’t want to add another stressor to our lives. So, Eli has resumed skating and swimming lessons and Anna has started gymnastics.

Otherwise, David had his two month checkup. Everything went well there. We’ll keep a close eye on him because he is at risk for falling behind, but so far he’s meeting his milestones. He’s still on the small end but his weight is making some steady progress – he’s now up to the 1 percentile! Height measurements have been all over the place, so who knows where his height really is. 

This past week, David has really started smiling. He’s also been more alert and not sleeping as much during the day, so he’s been enjoying time at the “gym” and reading books. However, he seems to use a lot of energy on those activities that when it is time for his feeding, he’s been falling asleep and not finishing it. He’s still gaining weight which is good, but I’ll have to keep an eye on him. At night he just dream feeds – never fully wakes up but finishes the bottle. 

He was in clinic yesterday. They called vascular when we arrived, so David didn’t have to endure an additional poke in order to get his labs drawn. His anti-coagulation number was still in range, so he gets another lab holiday next week. Otherwise, his echo showed the pressure gradients across both stent locations were elevated. However, David was pretty agitated during his echo, which can cause those numbers to be up. He kept wiggling all over trying to free himself from the swaddle they put him in. At the end of it, all his limbs was free except 1 arm. He usually needs to feel snug and secure in order to be calm, along with the shusher going. Since he had some wiggle room, he was not going to be happy until he was free.

His blood pressure was also elevated. It took 4 times during his vitals check to get a read on it since David was not having it either. When the team came in, they asked if he was agitated during his blood pressure since they did not like the number they saw and decided to try it again. As soon as they put the blood pressure cuff on his arm, David was not having it. It took them a while to get him calm before they would try to get a read. The read they got was even higher than the read that the nursing assistant had registered. Since David is not at the high end of his blood pressure med, they decided to increase it. Otherwise, we’ll be back next week and hopefully David is more relaxed so they will have a better idea of the pressure gradients in his heart. I’m not really sure of the next step at this point, because it seems too soon after his last cath for those stents to need another ballooning. His main cardiologist will be back next week so we’ll have a better idea of next steps, especially if those numbers remain elevated.