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Wednesday, August 2, 2017

Pyper is discharged and goes home. She came home on oxygen, and they have been trying to wean her off it ever since, being somewhat successful when she is awake, but her level drops quite a bit when she sleeps.  They never identified the exact cause, but had assumed at the time that she had gotten some sort of virus that would eventually clear up.

Since they had not been able to wean her off the oxygen for several weeks, we had sensed there was more going on, and pushed to get her tested for other things, as we were concerned she was not developing correctly, not enough weight gain (about 10 lbs at 3-1/2 months old), not seeming to respond as much as maybe she should be, her eyes were not tracking together and she did not seem to focus on much and looked off to the distance often, and lastly, she seemed to clench her fists quite a bit, almost constantly.

Because of this, some outpatient tests were done and we found out she has the following:

She has a sub-mucus cleft palette  (They will wait to repair if needed due to nasal talking later in life.)

She has a hole in her heart, but they will wait to see if it grows together or creates issues that require a repair later.


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