Our doc appt is tomorrow morning with Battley's cardiologist. They will do an ultrasound of her heart to see if there is any change in the hole there. We were told that Battley would start to lose muscle strength and quite the opposite is happening lately. Of course our prayers are for a miracle and that the hole is closing on its own.
Rosa (B's nurse) and I are trying to figure out what is going on with the spit up. B seems to be on a pattern of one episode per day around 11:30pm. Our current guess is that it may have something to do with her being overly tired. I tell Rosa that sometimes I feel like I am in a huge control room with knobs, buttons, and switches all around and I'm constantly trying to figure out the perfect combination. I am hopeful that we are able to figure something else out tomorrow to get this under control.
In other news, we are on our way to getting back to a normalish sleep schedule. B has slept for 2 nights except for the spitting up parts. We have also cut out her 3am feedings for 2 nights now...so far so good!
I have a favor to ask of anyone who reads this and has a child with a feeding tube...I am doing some research on which g tubes people like. I've gotten some great feedback on the Kimberly Clark Mic-Key G tube. I'm trying to think of every question that may come up or I may need to ask when talking to the gastro doc. So, if you have any good info please email me! catherine.terhune@gmail.com
Hmmm...what else? We really enjoyed having H home from school with us last week. It's always kind of a bummer when he has to go back. We have done a little decorating for Christmas. We always have a real tree and our artificial one. This year we are decorating the mantel and maybe no trees...for sure we are not getting a real tree. Gotta go feed B, but I will try my best for an update tomorrow or Thursday for sure.
C
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