Before I tell you about Averi’s miracle day this last week, I want to warn you that I am way behind on blogging since going on vacation for Easter. I felt way overwhelmed by trying to start where I left off and catch up to the present so I am going to go backwards. Just follow the links on the right for “Latest Posts” if you are concerned about staying up to date on all of Averi’s going-ons. =P (Note the Mohawk below.)
This last week was no better or worse than the last…until Friday. Averi drank her breakfast bottle pretty well, and since she took so much from Frances last Monday I decided to try giving her another small bottle. Long story short, she took several bottles until she had taken her entire 120 ml feed, plus another 40 mls of prunes mixed with it, for a total of 160 mls…from a bottle! That is double the amount she has ever taken from a bottle before, and then she still ate another 2 bowls of oatmeal!
I was very excited but had low expectations for lunch since I figured she would be tired. She surprised me and drank the 160 mls of milk and prunes again! By dinner I thought I was dreaming because she once again drank the whole feed! She had done the impossible three times in a row and I didn’t have to hook up her pump all day! (Note the exclamation points!)
The sad end to this story is that we used the last of our thickener and had to give her no bottles for the next 2 days. I was excited to go to OT this morning so we could get more thickener and Frances forgot to bring it. Luckily, Dan left early from work so he could stop at the hospital and get some more thickener.
Since we didn’t have any thickened milk, Frances found a slow flow nipple and tried feeding Averi regular breastmilk flavored with prunes…sitting up, with a half-full nipple to make it as easy as possible. Although it took longer, Averi did better than expected and didn’t even gag.
While she was feeding Averi, I talked to Frances about several of my recent concerns. Ever since getting croup Averi sounds wet when she breathes and it always gets worse when I feed her. I want another swallow study done to make sure she is not aspirating now that she takes consecutive swallows.
Frances agreed but explained that most doctors don’t like swallow studies since not enough tests have been done on healthy babies to know how much aspiration is normal during eating. She decided that making a referral to GI would be the most optimistic.
I was excited until she pointed out that if Averi is still aspirating she will have to stop eating orally. That would be a nightmare! The positive side is that if Averi aspirates with thinner liquids and not with the honey thickness that we are currently using, the doctors will be on board and we will be able to get more than the few samples Frances gives us.
This is important because most doctors also do not believe in using thickeners. I’d like to see one of those doctors watch Averi try to eat with and without it and tell me there is no difference. Besides, I’d rather Averi be able to take all her nutrients orally, thus getting rid of the G-Tube, than be able to swallow small amounts of thinner liquids. We can always work on thinning her feeds later. (Hello, she just took a whole day’s worth of feeds using the thickened milk.) Frances agreed with me but I don’t know how much weight that carries.
We were sent home with the slow flow nipple and told to try it out…I think I’ll be sticking with the thickener.