Well, I guess it is time to try to do some things differently to see what helps. It really isn't my comfort zone - figuring these things out - but I really don't feel like I have a choice. I have been given a lot of helpful suggestions on the T21 board.
I slowed her rate of feeds which means that they will take longer. Less of a problem if she is asleep. Just at this last feed she pulled the tube out prior to the start of the feeding. I guess it's better than during! Her current rate for this feed is 230 which is down from 245. Her rate prior to surgery was 215. The nurses at the hospital seemed to think that I could run it over 30 minutes no matter the volume. I'm not thinking that will work here.
I tried giving a longer time between feeds just to see if it gave her tummy more time to empty. We went 4.5 hours (normally I go 3) and she refused the bottle. She might have gotten a sip or two by mistake, but certainly did not want it at all! *sigh*
I really want her to be able to eat. I wish it weren't going to be such a looooong process. Feeding has taken up soooo many hours of my days for so many months now. I long for the ease of nursing a child again. I loved that - and appreciated it too.
So hard to know what to do. I wish my ped was here. I've thought of calling the office to talk with another ped on call. I just wish it were one that is familiar with Eliana and/or feeding tubes. We'll see.
Gotta run. The feed is up and Eliana is fussing.
Love,
Leslie
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