Saturday, October 20, 2012

Quick Update

During nap time I actually have a moment for a quick update. Callista is making great progress in her PT and OT treatments. At out last PT appointment, she held her head up for about ten minutes (with a few breaks, but still sitting up). She has to get splits for both of her thumbs since she still doesn't hold them out like she should. Of course, our little Houdini gets out of them in a matter of minutes. Her first one was soft and she was out of it and it was broken by the time we made it home from therapy. She was switched to a hard one the next appointment and she had her thumb out of the ribbon and behind the splint by the time we made it to the car.  So we are still working on that!

For once, we don't have anything much to update on and for that we are thankful!! We have officially been home for the longest we've ever been home and enjoying every minute of it. Since the vesicostomy, things have gone so well for Miss Callie. No more UTIs, woo hoo!! We are still dealing with severe reflux, but she is gaining weight and not aspirating so no one is concerned right now. What a great couple of months it's been :)

Thursday, October 4, 2012

Diagnosis- One Year Later

I don't talk about the events of "the bad day" in detail very often, because even to this day my body tenses up and I feel like I relive it again. The feeling you get is unlike any other you've ever felt in your life. It's a feeling only a mother "senses", when the silence is just too long.

I remember every little thing about the day, before, during, and after the events. It's funny how little things stick with you when a major event like this happens. I remember exactly what happened at work that day. I remember I was wearing my purple print skirt and white cardigan. I should have gone to that appointment alone, my husband was working. But all day, people were asking me if i wanted them to come with me. I told everyone no, it was just routine. My husband was able to get someone to cover for him for a few hours so he could come to the ultrasound. I t was overall just a really bad day for me and truth be told, I'd already cried BEFORE we even went to the doctors... All the signs were there that day that something was wrong.

We waited a long time for the ultrasound. It was about an hour late, and my husband thought he'd have to leave before we even got back there. We finally got to go back as the last appointment of the day. The tech asked us if we wanted to know the gender, but we already knew we were having a baby girl from our "fun" 3D ultrasound. She immediately confirmed it was a girl. She started telling us what she was looking at and after a few moments, she was absolutely silent. After what seemed like an eternity, she told me she was going to go get the doctor. I looked at my husband and told him that something was wrong. I could see it on his face as well.

When the doctor came in, she didn't say much, just started looking at things with the ultrasound. After only a few minutes, she informed us that there were some abnormalities and I needed to get dressed and come to her office. I was numb as we walked through the hallway, numb as we sat in the chairs, and numb as we first heard the words "Neural Tube Defect". Otherwise known as spina bifida. She threw out terms like "banana sign", "chiari", and "hydrocephalus". All I remember thinking was-- this can't be true, she moves all the time! She kicks all the time! Spina bifida means she is paralyzed and it's just not true. My OB had no information to share with us. She walked out of the room and just left us there, left us there to process on our own. After a short amount of time, we were handed a folder about Maternal Fetal Medicine and an appointment in Columbus, and we were basically pushed out of the office-- After all, it was closing time, what was a devastating blow to a family compared to wanting to lock up and go home?

What else does a girl do but call her mom to come get her? My husband had to go back to work after all this just to close out his patients with the new shift. So my mom took me home. And I Googled. And hated everything I saw. For being such a great research tool, the things you see when googling SB are SO outdated. Outdated as in false information. Outdated as in scary as hell. DO NOT GOOGLE. Plain and simple. It's hard to stop (said the girl who googles everything). But it's bad for you so just don't. I wish I hadn't. I wish I'd waited for Dr. Matt. I wish I'd waited for the wonderful nurses and doctors at Vanderbilt. Because I spent 24 hours thinking my baby would be paralyzed, would have brain damage, or maybe even wouldn't survive past birth.

This was literally the worst day of my life. Nothing else can compare to the pain and the grief over the loss of your normal pregnancy. It's weird moving into that area of unknown. Think about it: You get pregnant, you know how a baby is supposed to progress. Your friends have told you all the horror stories of labor. You've gotten all the hints from your mom and mother in law. And then you are dealt a new hand out of a blank deck of cards. No one can tell you what your baby will be like, no one can answer your questions with anything other than "we won't know until she's born". I've read several times throughout the last year where women like me have given other women the great advice to grieve over your "lost normal baby". It's natural to grieve because you lost the child you "knew" and are faced with uncertainty. For instance, October 4th, I wasn't thinking "I hope I get a surgery where they take my uterus out of my body, cut it open, and perform a second surgery on my 22 week gestation infant." (Yeah, dramatic, LOL). I wasn't thinking about the fact that my beautiful baby girl would endure six surgeries within 7 months of her life (or the fact that she may have to have more...).

If I knew what I know now, I'd still have worried. I'd still have cried. I'd still have asked God "Why me, why us?". But if I knew, maybe it would have been less worry, a few less tears, and instead of asking "Why", I'd ask for help through the rough parts instead. I know saying this now isn't going to help future SB mommies worry, cry, or ask less and give more. Each of you in turn will experience this epiphany on the birthday of your child and every day after. With every smile, the pain lessens. With every laugh, a bad moment is replaced with a good one. Every coo brings a little light to the dark spot. And I for one am looking forward to replacing this event on my list of important moments in my life with more important ones, like her first word, her first birthday, and yes, her first steps. All I can say to anyone in any crisis, not just SB, is HANG ON. I hit the jackpot for hanging on, for doing something not many people have to experience... This is my reward:

Celebrate Spina Bifida Awareness Month with us and spread the word that our babies are happy, awesome babies and deserve a chance to show the world :)