I had a twin pregnancy. They were born full term at 38 weeks, Mikayla was healthy, and Alexis was having apnea eposides at birth, but we already knew she had Aicardi, it was diagnosised at 29 weeks pregnant thru studies done at chop.
Alexis has a severe form of Aicardi. She has small left eye, seizures, aspirations, acid reflux, cortisol insuffiency, thryoid issues, poor muscle tone, feeding tube, oxgyen and bipap (obstructive sleep apnea) requirements 24 hours a day.
Update:
Alexis was having alot of difficulty breathing, We decided to let her come on hospice, and take her off Bipap, and let her and us enjoy what time she had left.
She was doing great, and on September 20, 2012, she was not doing great, she kept dropping o2 stats, we would get her back up, only to drop lower and lower. We decided to let her go, and we held her and she died in our arms, surrounded by her family.
Its been only 2 weeks, but we miss her so much.