Tuesday, June 21, 2011

February 6, 2007

On February 6th in 2007 I wrote this:

Well people, once again blogging has turned out to be a wonderful thing. The kind words that some of you wrote have touched me in a way I cannot explain. The past 24 hours were sheer, agonizing torture. I have gone from feeling the lowest a person could feel wishing that God would just take me child and not let her suffer to feeling like she is going to be absolutely perfect no matter what anyone says. It has been a very bumpy ride, but with the support of my amazing husband, my family and all of you we have come so far in a short time.

We met with the OB today, I talked to my sister (who some of you know is an Obstetrical Physicians Assistant) and my Mom has ton a ton of internet research and what we are finding is that the doc we met with yesterday may have been painting us the bleakest picture possible. That perhaps our little girl has a shot at a perfectly normal life with typical development. We are starting to hear stories (even through this blog) of people in the same situation who have normal, healthy babies. We are deciding that we have to rely on faith that our daughter is going to be fine and this is all part of the plan.

Thank you all so much for your prayers, your support and your faith. We need it right now.

Only a day before that I had written this:

We are back from the hospital and things did not go very well today. We got a lot of info, so this will be a quick run-down, I am not feeling all that up to it. It turns out that Baby A has what they believe to be a birth defect. She has dilation between the 3rd and 4th ventricle. That is called Aqueductal Stenosis. She has small cerebellum lobes, which may be either the cause of or the effect of the overall problem. She also Ventriculomegoly, which is dilation of one of the ventricles. It should be less than 10mm and it is about 13mm.

The prognosis is not great, but very cloudy. The peri said it could be anything from developmental delays to more severe cognitive deficits. We got to the OB tomorrow, the peri in 4 weeks for another u/s. After that we will go to Children's Hospital in Philly for an MRI and to eventually meet with the neurologist and a pediatric neurosurgeon.

We are obviously at a complete loss right now. We have so much information, yet so very little. Termination is not an option, so we just have to wait and see how things will progress. I'll probably be absent for a while, but your prayers are very needed right now. I am a little angry at God, so it might help if others pick up some of my slack.

It's just amazing to me how far we have come in just a few years. The unknown was so scary. It shook me right where I stood. I had no idea what was going to happen. Would Abby survive being born? Would she ever walk or talk or do anything normal? How difficult was her life going to be? How was that going to effect Grace? I don't think I slept for months. I had to force myself to eat and do normal things. All I wanted to do was sit on the computer and research.

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