This morning Emilia had her appointment with the feeding team at Cincinnati Children’s Hospital. They confirmed what I had already suspected: that Emilia has a moderate allergy to milk. This means no more cow’s milk, no more traditional yogurt, no more oh so delicious butter in her diet, at least for now. I had actually already stopped giving her most dairy on Friday and her BMs per day dropped from six or more to two or less. Since then she also has been able to sleep through the night like an angel, no tossing and turning, no whimpering, crying and random sounds, and no wee hour play time.
The problem is that Emilia does not eat enough calories per day and does not drink enough liquid. The feeding team would like her to have 800-900 calories daily to gain weight and drink 24 ounces of liquid. The last week or so she has been eating between 400-600 calories per day, including drinking Pediasure to the tune of about 6 to 8 ounces only. Now, her purees are still pretty liquidy and do provide some hydration, but I was still worried.
I knew Pediasure would no longer be an option for us because it contains milk ingredients, so we have been given two similar products to test which are soy based. They have a lot of calories and vitamins/minerals. I doubt Emilia will be drinking 24 ounces of anything any time soon, but I am going to try. Plus, I am supposed to continue to offer her light purees. Wish me luck!
Lastly, Emilia has a pretty significant iron deficiency, so we have been prescribed a liquid iron supplement to see if her iron levels will come up. There’s a possibility that they might not in which case her doctors already know the reason which is genetic and of no concern at this time.
I am glad that after a month of guessing and experimenting, we are finally finding some answers for our little girl. Everyone please send her good thoughts to increase her calorie and liquid intake in the next days and weeks.
Our Mera was milk intolerant too, as an infant. Lucky for me, she grew out of it. But I clearly remember those days of having to avoid dairy like the plague and that stuff is in EVERYTHING. In short, I feel for you. Good luck getting her consumption up. Is it just that they didn't feed her much so her tummy is too little?
ReplyDeleteI am so glad you figured it out. Getting her to drink more may be the trickiest part of all. Good luck to you. We still need to get more blood for Summer done. They messed up some vials. Still trying to figure out why she doesn't heal. Best wishes to you. Stephanie
ReplyDeleteI was told at the orphanage that she ate 300g of food four times a day and that she had to finish those portions no matter what. They said she was not a good or compliant eater (true), but noted that she had normal BMs and no digestive problems (probably not true). I was given a daily schedule that showed what was served at the meals, but I think it was just what the orphanage prepared overall, not specifically Emilia's possibly modified diet. Milk was not mentioned as a drink, but yogurt was offered. They stressed to me that she could only eat pureed foods.
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