Something's Not Quite Right

"She seems like she's a happy little thing but there's a few things that concern me." ...
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...... It was her 6 month appointment and the doctor had already started adding a list of things she was concerned about. The list was growing with each passing appointment and I wanted to scream: She's fine, she's happy, she smiles. There's NOTHING wrong with my baby. But in the back of my mind I knew that in some ways she was different from my friends' little ones who were sitting up and rolling. She was MUCH taller than the little one's her age but her dad was every bit 6 foot 6. It just seemed to take her awhile to learn some gross motor things but surely it wasn't that big of a deal. Kids grow at different rates, right? I was all about just letting the doctor ramble on about her concerns and not listening because I wanted to believe she was a normal baby, just a little tall for her age until the doctor said "and this might be caused by a tumor behind the eye. I want to send you to a specialist and have an MRI scheduled."

 Now when you are a mom, one of the worst things you can hear is that your child might have a tumor. It was hard for me to not break down right there because this wasn't the first time I had heard the word tumor that week. My husband had went in to have a routine vasectomy (We had a VERY hard time getting pregnant and delivering Natalie so we had made the decision to just have one biological child and adopt the rest) and during the vasectomy they had discovered what appeared to be a testicular tumor and would have to go under the knife a second time to have it removed. My family's health was falling apart around me and I could no longer deny that there was something not quite right. So we ended up seeing an ophthalmologist, who quickly diagnosed Natalie with a Nystagmus and sent us on our way to the hospital to get an MRI. 

I'll just say it: I HATE hospitals. They are sterile, cold and depressing and I have too many memories of sleeping in waiting rooms and praying in the chapel that loved ones will pull through. The thought of my little 6 month old already having to deal with doctors and machines pissed me off. The thought of sitting in that waiting room waiting to hear news about my child pissed me off even more. But more than being pissed off I was Scared. Mind numbingly scared. Natalie is the most cherished, loved and adored person of mine and my husband's entire life and we fought like hell to get her here. She was going to stay here, be healthy, live a long happy successful life and like hell if anyone told us otherwise.

A few weeks later we got the results of the MRI. NO TUMOR! We were ecstatic about that but then the doctor kept talking and started adding to the list of new concerns... there seemed to be a little excess fluid on the brain, some white matter loss, a very small bleed on the brain (they were certain that would not be a problem and was caused by the rough delivery of our daughter) and enlarged ventricles... white matter loss? Enlarged Ventricles? and a lot of other medical mumbo jumbo thrown in quickly turned my elation over the lack of a tumor to uneasy confusion over the host of new issues this doctor had brought up. What did this mean for my daughter? Was she ok? ... the ophthalmologist while well versed in matters of the eye was less than useless when it came to the brain so he sent us to the next specialist: a neurologist in the children's hospital.