Lily is doing unbelievably well these days. Her major risk is still aspiration (breathing milk or saliva into her lungs, impairing her ability to oxygenate her blood) but she's handling all of her episodes all on her own. She usually has one or two a day. After a short period of blueness she pinks right back up again, without any interference from us. It will always be a risk factor but her nurse says she wouldn't be surprised if it wasn't what took her life. Which means she may be around a little longer than we thought! We're still measuring in months and weeks, but that's much longer than we originally anticipated. We're thrilled! She's nothing but sweetness all the time. Her head is growing at a rate of 1cm a week, which is definitely growth, but it's gradual. As it continues to grow it will get to the point where it puts too much pressure on her brain stem which will then stop sending signals to breathe. But there's no reason to think that will happen tomorrow or even the next day - and we'll take every day we can get.
She's been growing these past few weeks. She's 5lbs 3oz and 19" long. Plus, her eyes have lightened up and are the same gorgeous blue as Brady's (this is hard to see in photos because her pupils are constantly fully dilated...they look brown, but I promise they're blue). And she's growing more hair! She was born brown hair, kind of like a mullet. But the top is growing in now and it's very very blonde. So we have two blue eyed, blonde haired babies. Beautiful things.
Sweet baby: we can't get over how irresistibly adorable you are.
2 comments:
She is so adorable!
That is great to hear that she is doing so well. What a little sweetheart.
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