We just finished our morning visit to see the kids. Updates!
Jayce: His next challenge is to tolerate a richer feeding schedule. He starts receiving food + enrichment today and will increase calorie density once every day. If he keeps up with the new program, he can be off the IV in 4-5 days. No more needle pokes!!! Would love for him to be free from that.
Justine: Her stomach has definitely noticed the increase in food volume! She is a spit-up problem so they are slowing her nutritional increase and gave her a pump to help modulate feeding. She is still IV free, but bottle feeding may be delayed a day or two until her stomach can keep up.
She’s also had a handful of minor breathing episodes now that she is off the respiration machine. They are giving her more time to figure it out; if she needs only a little assistance, they might give her a smaller nasal tube. Alternatively, they can always put her back on the respiration machine. Obviously, we’re hoping she can stay off!
Tonight we’re enjoying games and food at a friend’s house. We’d still rather have the kids with us, but we might as well enjoy the freedom while we can. It was so hard to leave them this morning!