Outpatient

We had our first outpatient visit at Seattle Children’s this past week. We discussed his daily projectile vomiting, weekly “real” poops surrounded by daily “smears”, childcare and immunization schedule advice, and growth. Turns out Terran is the youngest current member of the LIFT group and one of the youngest ever as most babies are 8-9 months old by the time they transfer from the NICU to LIFT care. Hard to believe being in the hospital longer than he was… feeling grateful for that. As long as the vomits don’t increase in frequency we’ll just keep chugging along. We had stopped feeds for a couple days which helped minimize vomiting, but the team prefers he continue practicing feeding if he can. It’ll help him be successful eating later on plus gives him (albeit little) enjoyment right now. He’s now over 9 lbs and in the 7th percentile for his age. Intestinal Failure kids usually land somewhere 5-10th percentile. What the nutritionist watches is his weight-to-height ratio, which is perfect at the 50th percentile right now. Overloading TPN calories can lead to overweight kids so they watch it very closely.

One amazing bit of news was that Terran’s TPN hours aren’t reliant on him eating, or getting calories from oral feeding like we had previously assumed! Babies blood sugar is more unstable which is why he’ll be kept on 24/7 TPN until one year old. At that time, we can start backing off 2 hours per week and see how he does. That means in about a year, Terran could be on night-only TPN administration!! That’s HUGE!! It means he can go without his backpack during the day and maybe even enter a regular childcare with other kiddos. Until then, we’ll try to work out a mix of taking work off and family care at home. I go back to work in January, so we have a few months to figure it out.

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Additional gratitudes this week:
Walks. Fresh air is something I’ll never take for granted again. We get outside for at least an hour every day.
Ribbons. Terran loves looking at high contrast books and things, but nothing grabs his attention like the 3 ribbons hanging from his swing. That and the unfinished beam on the ceiling. Who needs toys? 🙂
Bibs. Layers are key for avoiding full outfit changes. Bibs are now a very functional piece of Terran’s fashion style.

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