August 16, 2009
Just a quick update... Faith had her first PT and OT/feeding appointments last week. She did very well at both; she scored about 3-4 months below her age for gross motor skills at her PT appointment, which was expected; and I learned some great tips that seem to be working well at getting her to eat at her OT appointment.
The other thing that came out of her OT appointment was the suggestion to transition Faith to bolus feeds during the day (3 hours worth of milk going in at once in 30 minutes, instead of a small amount constantly going into her stomach). Since I've always ultimately been in charge of her feeds anyway, I decided to give it a try, and I'm excited to say that Faith is officially getting 120 ml's of formula every 3 hours and tolerating it very well!!
I am still going to be increasing the amount every other day or so, just because she isn't tolerating her overnight feeds very well, so I've had to cut her normal amount in half, which means that even though she's at her "goal" amount, she's really not getting that much since she is only getting half that much at night. More specifically, since I've got her continuous overnight feeds going at 20 ml/hr, and her goal is actually 40 ml/hr, I have to make up those 20 ml/hr that she's missing over the 8-9 hours overnight during the day instead, so she will have to get an extra 160-180 ml during the day. Which means she'll eventually need to get up to taking about 150 ml every 3 hours to really be at "full" feeds. We're also still thinking about Cisapride to help her tolerate those feeds better, I'm hoping to hear whether she'll be getting that in the next few days.
Our other big news is that we should be getting a baby scale at home in the next week or so, and I'll be able to keep much closer track of her weight and growth... which means, we can do a trial week off TPN and see if she keeps growing, and if she does, we can probably get her line taken out when we are in Boston next month! This is HUGE... she has made so much progress so quickly!
To go from continuous to bolus feeds is a big step on its own, and then to be done with TPN is awesome! She's had her line for 9 months (well, this is her second one, and she got it at the end of January, so she's had this one for almost 7 months...) and she's NEVER had a line infection, and it's looking very likely that she'll get her line out without ever having a line infection!
Anyway, that's our news for now... I'm hoping to post again soon to say we're all done with TPN!
5 weeks ago