Nutritionist appointment

Well, we had OT and then we were off to see Anne, Harlie's nutritionist. Anne works with her pulmonologist, so everytime we see her, we see Pulm., too. The Pulm. doc we saw today was not her usual one - instead we saw the doc that we had when Harlie was at MCV for those 8 weeks in April and May. We also saw a resident that was in the PICU during that same time. He was doing his rotation with Pulm. this month. Small world. But nice to see some familiar faces. I liked them both a lot.

Anyway, they weighed her and measured her. I was very disappointed. She only weighed 15.9 pounds, and just last week she weighed 16.1. Not the direction we want to go in. And she wasn't really off her feeds for any large amount of time. Obviously for the surgery, but not enough to account for that difference.

I think that although her work of breathing is less - she still works harder than a healthy baby. And now she is way more active, so she's burning even more calories.

Anne told me not to be too discouraged. Overall, we are still making progress, even though it is SOOOO slow!!!! She gave me a feeding plan. Starting tomorrow, I need to increase her hourly volume. She will be fed for 3 hours, then off for 1 hour. We will repeat this all day. Then go back to continuous for the night. We keep her on this schedule for one week. Hopefully she will tolerate it okay.

Each week, the hourly volume increases and the time on the feeding decreases. It will probably take 6-8 weeks to make the transition to bolus feeds - if she tolerates it, of course.

Oh, Harlie has started to drop all her toys when in the highchair at dinner time. Murphy jumps up and goes and gets them. Before he can get back to his seat, she drops it again. He gets very frustrated. It is very funny. Last night, Harlie picked a toy up and very blatantly dropped it on the floor. Murphy yelled, "Harlie, did you do that on purpose?!" It was so funny. He looked at something today and said, "Mama, that is hysterical!" And he is very tuned in to the weather. He said, "Mama, it sure is cloudy out here." He really cracks me up.

Well, that's it for tonight. Oh, I also uploaded some pics from her last surgery.

Take care,
Christy