Introduction

I decided to start writing a blog, more of like a journal to myself. Maybe it will also benefit others who are searching for information, reasurrance, and just someone to relate like I once was.
 My daughter was diagnosed with Schizencephaly. She has bi-lateral open left lip and closed right lip. She also has SOD ( Septic-Optic Dysplasia ), Lissencephaly, and Polymicrogyria.
 We found out when I was 30 weeks pregnant. It started when they found a shadow on an U/S. I was refered to the high-risk specialists where they reffered me to Childrens Hospital of Philadelphia. We were initially told it was most likely a brain bleed. As bad as that sounds, the prognosis was nothing compaired to what we would be later told a few weeks later.
 I of course was a devistated mess after confirming the shadow. By the time we went to CHOP 2 weeks later, I was feeling better, like it would all be okay and this was going to be a waste of a day.
 We had and MRI, EEG, an U/S, and we sat with the genetic counselers. We spent the entire day there, awaiting the results and thinking everything will be fine, its just a minor problem.
 When the doctor walked in holding a model of a brain, I knew something was terribly wrong. There was 3 doctors, my fiance, his mom, sister, and myself all crunched in one room. They said she has whats called Schizencephaly. Basically clefts in her brain. Explained how she will most likely have severe delays, be mentally retarded, will not be independant, and will be born either very limp or very tense. She may not be able to eat and will require a feeding tube or and aparatus for breathing.
 I very slightly remember seeing the images. Or fully hearing everything they said. I remember thinking this was the end of my world, my happiness. I wanted everyone to get away from me, to be alone. I wanted to scream that they were wrong, that this couldnt happen to me and my baby. I wanted to say how this couldnt be possible, I did everything right. I took my prenatals, I stopped smoking, I ate well, I went to my appointments, ect. I was mad at everyone I knew who had nothing wrong with their babies even though I didn't think they made good parents. I immediatly wondered if I was going to be able to handle that life they said layed before me. If she would live. If this was some kind of cruel karma from something I did.
 I blamed myself. I still blame myself. Its something I will forever live with. Although I know I didn't do anything to cause it. I feel responsible.
 The next 7 weeks left of my pregnancy were pretty miserable. I thought about it 24/7 and was constantly scared. When felt her toss and turn, kick, and hiccup, and I felt more at peace. Almost like she was saying "mom, I am okay"
 We had appointments every week getting non stress tests and ultrasounds. We had consults with the NICU doctors and the Nuerologists. I googled everything, and found nothing.
 I was scheduled to be induced November 4th for her having a lower then average weight for her gestational age.
 November 6th 2011 at 2:30 pm, Arianna Renee arrived. Beautiful and healthy. She scored a 9/10 on the apgar. She didnt need to be in the NICU and she was nothing as they said she would be. I guess most moms cry when they first hear their babies and hold them. I couldnt help but sit right up and smile. My baby was here, she was okay. Actually, she was perfect.
 I was thankfull the doctors were wrong about her prognosis at birth. That gave me hope that they could be wrong about what she may be like later in life. All I can do is pray for her. And I do every minute of the day.
 I will post more about our experience since then. This is my birth story, and the beginning to how we got here.