of what happened directly during/after the birth will be postponed for now per legal advice. Suffice it to say that there were some major medical decisions that could have been made differently with an ultimately better outcome.
I have meant to update this blog in the past two months, but by the time I would come home from the hospital at night, I simply would be too tired and overwhelmed to write down what was happening.
Things seemed to have evened out a bit. She has been at the NICU in Charleston (at MUSC) since August 24th, and we anticipate she will be there for another 2-3 weeks at least... Hopefully home after that. We are staying at the Ronald McDonald house in Charleston - I stay here Sunday night through Friday morning, and Rafe stays here Thursday night through Sunday evening. Sometimes my mom will come out and stay so that Rafe, Amelia and I can have a day or two together as a family back in Beaufort. It seems strange to be in a city for 2 months and never have seen more than a 2 block radius of it. In order to save gas, we switch out the cars on the trip so whoever stays in Charleston doesn't have a vehicle. We are lucky to be at the RM house - it's only 10$ a night to stay here, and we are able to eat dinner for free most nights here.
Tomorrow she will have another surgery - she had necrotizing colitis very early on and had to have some intestines cut out and a colostomy and mucous fistula. They will be reconnecting that and putting in a g-tube in order to continue feeding her through her stomach when she comes home. She is unable to eat enough to survive by mouth at this time. Right now they are telling us she will come home on oxygen, caffeine, and with a g-tube; monitors will be able to help us watch her oxygen levels carefully. Not sure how it all works yet, sometime this week we'll find out.
There have been some improvements. She has slightly better muscle tone. More info to come.
Thank you to everyone for your prayers and cards. We can not tell you enough how much they have helped.