Adelina seems to be feeling better, now we are just working on getting her on the right dose of blood pressure medicine, her diastolic is still higher than mine. Her oxygen needs are still fluctuating a little too much and we are changing her feeds (more volume, less formula). We hope to be home by Sunday but have learned not to expect too much. Our Addy is really such a trooper. She has thrown up a lot and put up with many blanket changes and baths. She loves having her hair washed and still loves textures, she burrows her head into soft fabrics. They brought in a swing and mobile and even tried out a few hand held toys. We put a pacifier in her hand and she actually put it in her mouth the first time, the second time she got her fist but didn't seem at all disappointed :) Adelina loves to smile and we love to get her to smile.
Because of Adelina's size she is outgrowing her shunt, which is normal, and is needing more intervention. Her surgeon,Dr Eckhauser, is thinking that the next surgery will be scheduled around her three month mark instead of later. We had hoped to make it as long as possible but it looks like sooner rather than later would be better. She will be three months old on the 18th of January.
Yesterday they decided that because she throws up a lot it must be that she has a milk protein allergy. I feel for anyone that can not have dairy products. I went for one day without dairy, it's in everything (spaghetti sauce? yep!). This morning we decided that that was not the problem, thank goodness. Addy took thickened milk from a bottle yesterday and didn't seem stressed for the first time since her surgery. When she is able to take more than 10 milliliters by mouth she can go back for a swallow study.
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