August 16, 2011

Worst. Day. Ever

I know for all of 2011, I've been a really really horrible blogger. So now I have so much to catch up on that I don't even know where to start. August 16, 2011 is a day that I wish I could erase. Seriously it's the worst day of my life. It started out as a great day. 37 weeks pregnant and heading into a sonogram to check on our baby girls status. I hadn't had a sonogram since early 20ish weeks because I was so healthy. I'm not sure if this is a blessing in disguise or a bad thing. So of course, I was excited. Excited actually doesn't even do it justice but you get what I mean. I was alone (big mistake!). We had recently sold our home (exciting, something I need to blog about later) and so Adam had to be at our rental to get our gas turned out. I could seriously write an entire book about this day and I think that is part of the reason that I've neglected this blog since Adelyn's birth. I don't know how much to share and have never dealt with that many emotions, that I don't know how much I should share blah blah blah. Anyway, back to August 16th. After the sonogram they told me Adelyn was measuring 8lbs, 9 oz with 3 weeks left. Dr. Monier brought me in to speak with me, and I expected him to say he wanted to induce me. Nope. I only could wish that was what he wanted to tell me. He informed me that they found what appeared to be two cysts on her brain and with that my little perfect world came to a screeching halt.  I believe my exact words to him were "I'm sorry, I don't think I understand what you are saying to me." I work in the medical field so I knew exactly what he was saying, but in that instance and relating to MY baby girl I just didn't understand. Dr. Monier said he didn't either but that he had a specialist that could see me right away at the hospital. I don't think i've ever cried so hard in my life. The  phrase I remember repeating over and over on this day was "I can't believe this is happening." Some how I managed to relay this message to Adam and he met me at the hospital. My parents and sister met us there as well.

The next dr that we met with was a high risk OB with level 2 sonograms. We were able to see her brain and skull with more detail. I didn't know what I was looking for but I did know that her skull should not be solid black. Black was fluid he said. Fluid that was putting pressure on her brain and making it almost impossible to even see on the sonogram. Not what any mom wants to see. One thing I can be thankful for is that he did not see any cysts or tumors of any type. His diagnosis was aqueductal stenosis that was causing her  hydrocephalus. Basically there's an aqueduct in your brain that drains the CSF, hers for some reason or another was closed so that the fluid could not drain. He told us he could not tell us much more than that. The diagnosis would have to be confirmed with an MRI after she was born. He also said we would need to contact a neurosurgeon and that he could make that referral for us. There are a lot of scary unknowns with hydrocephalus and the unknowns were the hardest thing for us to deal with. They couldn't tell us how her head would measure at birth, they couldn't tell us if she would have any developmental delays, they couldn't tell us how this happened,etc. It's been devastating news to say the least. Our world was shattered in the blink of an eye. I think from August 16th until she was born on August 25th, I cried for at least half the day. The first night I cried myself to sleep with Adam doing his best to console me.  I just couldn't get it in my head that this was really happening and I was so scared for her and for her future. Thankfully Adam and I have an amazing support system. We had friends bring us dinner and come over just to hang out with me on the nights Adam worked. I found if I just kept busy, I thought about it the least. I prayed alot. I've always been a pretty hard core prayer, but it increased about tenfold during this trial.

We got to meet with Dr. Swift, the neurosurgeon who would eventually operate on our sweet baby girl, the Monday before she was born. Seriously this man is sent from God. He sat down with us for about an hour and tried to answer all our questions and help ease our fears. Again, with this diagnosis, there are so many things they just can't tell until after she's born, but he was able to help us start to accept and move forward. I felt comfortable knowing he would be helping my baby. Talk about a blessing but Dr. Swift is actually one of the neurosurgeon's who operated on the Egyptian conjoined twins a couple years back. These Dr's are amazing and I"m thankful that they were able to get us in and meet with us and take on our case. Dallas has amazing medical teams. After Addy was born, she had an MRI, and Dr. Swift was able to review those and then decide what best approach to relieve the fluid. He decided a VP shunt was needed and the best choice for Adelyn. We trusted him and moved forward. Adelyn ended up having surgery 5 days after she was born. Talk about second worst day. I'd trade places with Adelyn in a heart beat if I could. I just want her healthy and happy.

I think I'm rambling...there is just so much that I could write, that I'll leave it at that for now. Her final diagnosis stayed Aqueductal Stenosis and Hydrocephalus. Her hearing was perfect. She came out perfect. And we love our sweet little girl. God has great things in store for her. She is amazing.