Baby girls surgery went very well this am. The doc had issues because she has no subcutaneous fat and her skin is thin, but he was successful and she now has a VP Shunt.
Recovery has been tough. She had to stay intubated longer than expected because her left lung semi collapsed. She woke up while the tube was still in and just cried and screamed except no sound came out and her little heart rate would jump above 200. It was all I could do not to cry with her. Her silent screams just killed her Daddy and I. This happened every time she woke up until the tube was removed.
They put her on oxygen for the evening. And finally ordered her some pain killers with evening rounds ( 14 hrs after surgery ) She wakes up crying and just wants us to hold her hand and stroke her cheek. It's all that will calm her. Hopefully her pain meds get up here quickly.
She should be allowed to eat again by morning, which will be nice because this little one has a voracious apatite and hasn't eaten since 1130 last night. She was HANGRY when we got here at 530.
As I mentioned last night her diagnosis was changed. Today we learned that there are only 1 to 3 cases per year world wide of congenital Colpocephaly. We wanted our baby doll to be her own unique person but this was more extreme than we were expecting as far as individuality is concerned... There are ways to aquire the disorder but being born with it as the main issue is apparently exceptionally rare. There are very few studies and even less information readily available about it. The shunt will help but beyond that all that can be done is to treat any symptoms that may arise. We are praying for an extremely mild case with no noticeable symptoms. That being said we are prepared as we can be for whatever God has in store for our little family.
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