We went to CHOC today for a feeding team evaluation and it went great. There are going to be a lot of changes in the family as well as with Caitlin and her feedings, but it is going to take some time to change things from the way they are now.
For the past 5 years we have been told to feed Caitlin whatever she will eat, whenever she wants to eat it, wherever she wants to eat it, because when shes distracted by TV, she would eat more, and in turn eat more calories. I got to feel like a bad parent today when I told the feeding team this. They didn't judge us, we were just doing what we were told by the other doctors, but now the feeding team feels that we should do just the opposite.
They would like us to give her an appetite stimulant every night so that every morning she will wake up hungry, and would possibly eat breakfast, for the first time in a while. That would be a miracle.
They would also like us to not let her "graze" during the daytime, but instead have 3 set meals and meal times and 2 snacks in between, and not let her have anything in between. Give her 30 minutes to eat what we are eating and if she doesn't take it away and do not let her eat anything else. THAT right there is going to kill me. Knowing that if she doesn't eat, that shes not eating for the rest of the night and will be hungry is just hurting my stomach just thinking about it. But I know CHOC knows what they are doing and its for the best. Its just going to be rough.
We are also going to be switching Caitlin from regular juice boxes to special ones with vitamins, and such with 250 calories per box. That will help out a lot with her calorie intake. We will also be switching her formula so that she gets less amount of fluid, but the same amount of calories, which in turn will help have a shorter pump time, so she wont get up and shut off her pump and lose calories.
She will be admitted in February for the 3 week inpatient therapy, and then follow up feeding therapy. For now until then she will do feeding therapy at Rady's until she gets admitted so that they have a more cooperative Caitlin :)
Hopefully I have enough strength to do this :)
You both will do great!! You are a strong momma!! :)
ReplyDeleteYou can do this, it will be one of the hardest things Your Family will ever go through but you will come out of it with a "Normal Caitlin" :)
ReplyDeleteThis feeding program is one of the BEST things Our Family has ever been blessed with, and I know that will be true for you guys as well! We are here for you 110% and don't hesitate to ask for ANYTHING!!