Claire is up to 7 lbs 6.5 oz as of last night. She is eating so well! About 130 mLs (about 4 ounces) every 3-4 hours. She loves to eat! She has been experiencing a few desat episodes this past week. Seems like about 1-1.5 hours after she eats, she has these episodes where her oxygen saturation level goes below the range and stays there for a few minutes. This is something the doctors watch closely with Claire due to her tetralogy.
It seems to mostly happen an hour or so after she eats a lot and while she is in a deep, deep sleep. So they are thinking either it's reflux or it's that her belly is so full from the food and the cyst and that she's totally out of it that she isn't taking deep breaths. Either of these things could cause the desats. She has times where she desats here and there for a second or two. But these are lasting about a minute or more. The cardiologists will keep a close eye on this leading up to Tuesday.
I asked this morning if the doctors would possibly either ultrasound, CT scan, or MRI scan Claire's liver before the surgery so they would have a benchmark to go by. The doctor said it was really up to the surgeon. So I am hoping maybe they will do some sort of imaging before the surgery. I like to have a before and after type scenario so we can see exactly how these cysts are changing. It makes it easier to watch for certain symptoms. So we will see.
My mom is with Claire this weekend while I am home trying to get a few things done. I had planned to work on Monday, but with the weather being crazy possibly, I am going to head back and make sure I am there for Tuesday. Even if I have to sleep in the hospital, I will be there. It's such a juggling act as I am sure it is with any newborn. This is just a little more complicated for us. Not much sleep going on in our household this weekend with anxiety (or maybe it's just me!). I know this is the best thing for Claire, but it's still scary when you know your 3month old child with a heart condition is going to be going through surgery and being put to sleep.
Please as always continue the prayers for Claire and her care givers. We feel and appreciate each and every one of them. Prayers are priceless.
The Scott Family