Just a little update for those of you who are wondering...
Hailey is doing well at home with us. Today she is 19 days old. Every day we have with her is a blessing especially since most Trisomy 18 babies don't survive birth and most of those who do survive don't live past 15 days. There are a very small percentage, like Hailey, that can live weeks and months longer than expected. It's hard to understand how such a small, fragile baby can be such a strong fighter - but that's our Hailey.
We have hospice nurses coming a few times a week to check in on us and Hailey. She gets weighed every Monday - last Monday she was about 5lbs which meant that she lost about 1lb since birth. She's still taking bottles of breastmilk, but she was barely getting enough to stay hydrated - drinking takes a lot out of her. So we use a tube to feed her twice a day and she's getting plenty of nutrients that way. She got an eye infection on Thursday but we've been treating it with antibiotics and her eye is doing much better today.
So that's about all that's new. It's great being home with her and we're excited to spend Christmas with her.
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