I asked the docs and nurses for Grace's full diagnosis today- ready for it? Tetralogy of Fallot with Pulmonary Atresia with VSD, Persistent Ductus Arteriosis, and Hypoplastic Pulmonary Arteries. What a mouthful!! Basically, she was born without a pulmonary valve, her pulmonary arteries are very tiny, there is a small hole or disconnect in her heart and her PDA doesn't shut on it's own. I cannot believe how much I've learned about cardiac conditions over the past month- I almost feel like I could teach a class! Today we were told that Grace may have some lung disease as well, due to her prematurity, or possibly even because of drug exposure in utero. The lung disease may not affect her at all as she grows, or it could be similar to her having asthma. Either way, she'll be somewhat more receptible to upper respiratory infections than other kids, especially in the cold winter months. So let's all praise God that I live in perhaps the warmest state in the nation during the winter months. I suppose the only better thing would be Florida, but I won't budge on that one! Her chest closing got delayed for now- they want her to lose a bit more fluid. Her chest x-rays look really good, she's lost TONS of fluid since her initial surgery. They suspect she'll be on the ventilator another week or so, and possibly be home within the next month!! Yippee!!! Everytime they say that though, I try not to get my hopes up, it always seems to get pushed further and further out. Grace was adorable this morning- she was fine until she heard my voice and then she started to cry and reach out for me, quivering her chin like a perfect little drama queen! So cute- I think her daddy will fall for it every time! She's asleep now, clutching her monkey and laying on her poodle.
She's so peaceful- I love to watch her sleep and breathe. I'm counting down the days until I'll get to snuggle her- I can't wait, it feels like forever (it's only been since Tuesday of last week)!
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