We have been surviving with the help of family. Grandparents and sisters have spent days and pulled all-nighters to get us through because right now David and I have to focus almost full time on Betsy. Her feedings have been a source of so much distress for her and we are still in the process of finding something that works.
Feeding her goes like this:
Offer bottle, she usually takes around 30 mLs. Then we wait 20 minutes and vent her tummy with her tube. Because of her fundoplication, she can't burp and so all the air she gets during a bottle would turn into painful gas pain. So after releasing that air we give her the remainder of her feeding through her MIC-KEY button, letting in 5 mLs every 5 minutes. If she is fussing (because of discomfort) then you have to wait till she is calm before any milk will go in. Basically they took her already tiny tummy and made it smaller by wrapping part of it around her esophagus so she can not reflux and risk any of that aspirating into her lungs. So the volume of food she needs to grow hurts her by stretching out her stomach. Poor baby girl.
Here are some more calm scenes from our house with our amazing help!
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