Ellie's Background

How do you summarize 5 years of surgeries, hospitalizations, diagnosis, ER visits, Dr. appointments, Therapists, IEP's? I can list all of the diagnosis, sugeries, etc... but it wouldn't include any of the feelings, joy, sadness, anger, confusion, love and knowledge that have come along with each new experience.
Ellie is the second child in the family. When I was 16-20 weeks along the Ultrasound Tech. suspected that there might be a problem with her brain. They sent us to a Perinatologist. He confirmed that there were some abnormalities, but things could be just fine. He wanted to keep an eye on it. So we went back in a month. At this visit was the bomb. He said that things were worse. She had a condition called Dandy Walker. It is a cyst int he back of the brain where the cerebellum is. She also had large ventricles in her brain. He told us that she would be stillborn, or die in the first year and a half of life. If she did live she would be severly handicapped. He said there was a small chance that she would be "normal". He gave us the option of aborting. Which was never an option for us. We proceeded with other tests including a fetal MRI, amnioscentisis and lots more ultrasounds. We met with Neurosurgery. We were told that she had agenesis of the corpus collosum (the two halves of her brain were not connected), heterotopia (the white and grey matter were in the wrong places) and hydrocephalus (a build-up of spinal fluid in the brain). They said that they would need to operate as soon as she was born to place a shunt (a valve to drain the excess spinal fluid).

People say "Don't you think it's better that you found out before she was born?" I say no. I don't think it matters. You have to grieve and deal with it either time. It's not ever easy. When you find out before they are born you have to "wait and see". You want answers to questions. You want to know outcomes. You want to know what to expect. But no one has any answers.

It was the hardest thing I had been through to that point in my life. I came home after the initial diagnosis of Dandy Walker and cried and cried. I prayed "just let my baby live". Not knowing how hard life would be when that prayer was answered.

The next step was to tell our parents (the grandparents). We called them on the phone that night. I think that all of them cried with us. It hurt me that we were causing them grief.

Next came research, research, research. Mostly on the internet. Gaining hope. Crying. Getting discouraged. Learning. And lots more crying.

I of course blamed myself. What had I done wrong to cause this? Why was this happening? What could I have done differently?

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I better stop there for now. This is emotional to dig up past emotions that you thought you had dealt with. But it still hurts. More to come later.

Starting a blog

I have decided to start a blog for Ellie and our family. I hope that it will be a way to express my feelings and also to keep family and friends updated on Ellie.
This seems a little awkward putting my thoughts and feeling out there for the world to view, but at least I know there will always be a listening ear. (or should I say watchful eye). I think as I get going it will become easier.