Joe and I worked Tuesday, Wednesday, and a half day on Thursday of that week. It felt pretty good to be doing something "normal." It was also so very hard to try to pretend that things were okay. Just proves that no matter what you are going through, life goes on.
I was told not to eat or drink anything for 4 hours before the MRI. They needed baby boy to be as still and cooperative as possible. I was really worried about this. He had been a very active baby. Technicians would comment on how much he would move, flip, etc. I prayed that the radiologist would be able to capture clear images. I was a little panicked about the test. I was initially told it would take 2 hours to complete the test. I couldn't imagine being in that MRI machine for 2 hours! But, I knew I had to do it for my little guy.
He performed beautifully! The test only took 30 minutes. While laying there and breathing just as they were instructing me to breathe, I prayed that he showed us what he wanted us to know.
While I was putting my shoes on, the tech opened the door and I saw Dr. P. standing in the hallway. He was all smiles and waved. I didn't realize he was going to be present for the test. I just expected him to read the results. Have I mentioned how much I like this doctor? I practically ran to him. He told me that it was a beautiful study and that great images were captured! I informed him that I have been researching and contacting parents across the country to learn more about DW. He had no doubt.
I'll mention that here. I spent the days between meeting Dr. P. and the MRI researching DW and using blogs and facebook to learn information from parents of children with DW. Joe used the time to learn (well freshen up on) all he could about the brain and how it functions. I reached out to complete strangers, and many of them reached right back. It was amazing. One parent actually asked if I could call to talk about it. I did! He told me all about his amazing daughter and how well she was doing. We spoke for a long time and he said he was going to have his wife call me after work. She did! We spoke for a long long time. I asked her everything. We spoke about the technical things and the emotional things. It was so nice to talk with someone who knew what I was going through. I thank God for them.
So, back to the MRI. Dr. P. said the rest of our little guy's brain looks really good. The brain stem was fully formed and looked "normal." He thinks he has about 60% of cerebellar tissue (cerebellum), the cyst is about a size 2 or 3 with 10 being the largest, his corpus collosum is present, he didn't see the vermis, but I have learned since then that perhaps a sliver of vermis was spotted. He believes that based on the condition of the brain and that so far no other abnormalities have come about, our child would be on the end of the spectrum that is highly functioning rather than nonfunctioning. I smiled for the first time in a week. And, I wanted to eat. Joe ran to the hospital gift shop and got me pretzels! Joe asked Dr. P. if we could see the images. I had no clue what we were looking at, but the guys sure knew. More was discussed. We also had to realize that our boy was only 23 weeks along in life and that many things could change/develop before and after birth. We understood this, but we were going to ride this high wave for a little while! Dr. P. said I would continue to see my OB as I would for any other pregnancy and that I would be followed by the genetics department and the doctors of fetal maternal medicine. He plans to see our baby after birth, but he said we can contact him with any questions.
So much about this syndrome is unknown. Every scenario seems to be different. No one is able to predict exactly how babies, children, and adults with this condition will do. I have always been scared of the unknown. I have to fix things right away. I am a control freak. ALL of this was/is out of my control.
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