Tuesday, March 8, 2011

Diagnosis Day

One year ago tonight, I did not know what Spina Bifida was.
I did not know the feeling of sheer terror I would feel in less than 24 hours.
I was looking forward to getting the next day's ultrasound over with.
I was not worried about the comment, "I can't get all the measurements I need" I had heard the week before.
I was kind of looking forward to seeing Dr. P again.
I spent time reading and singing with Paisley.
I did not know what a shunt was or how it worked at all.
I did not know the majority of you reading this right now, you wonderful SB mommas, you!

I woke up on March 9, 2010. 
I taught my 3rd graders most of the day. 
I met Rodney for the doctor's appointment.
I waited in Dr. P's waiting room like we did many times during Paisley's pregnancy.
I had an ultrasound.
Hmmmm... 
Lemon shaped... 
Cerebellum is low...
 Let's continue down the spine...
Turn this way... 
Scoot this way a little...
There's the defect... 
I think your baby has Spina Bifida... 
I'll go get Dr. P...
Rodney--what does this mean?
Me---I don't know.
Tears and fear for our little boy.

Neuro Tube Defect.
S1-S2. 
Meningocoele. 
Hydrocephalus. 
Possible paralysis. 
Likely bowel and bladder issues. 
Catheterizations. 
Surgery immediately after birth. 
Specialists. 
Neurosurgeon. 
Plastic surgeon.
Here is a book you need to get about George.
I think your baby boy has a very good prognosis.
He's going to be just fine.

We cried.
We talked some.
We prayed
I wrote and discovered a sense of peace in making everyone important in our lives aware of exactly what was going on.
We googled and became even more terrified.
We prayed.
We found the first of some blogs. 
A new family I had no idea even existed.
This whole group of people who had already done this. 
We all have similar stories.
We have lived this scary roller coaster.
We all have beautiful miracle children.

Oh Dr. P you were SO right! Our Beckett is just fine. He is so much more than fine. You see, Beckett has made us appreciate our life so much. We do not take little things for granted like we used to. We fear what should really be feared. We deal with what is in front of us. I share our story with anyone who wants to know. I had my first opportunity to share our story at Kosair Children's Hospital this past weekend and today I was contacted by another group at Kosair about other possibilities. How honored I feel! If I can help one other family, by sharing our story with a positive outcome, I have done what God needs me to do.
Beckett is one amazing little boy and I can't wait to see what possibilities are in store for him.






5 comments:

Autumn Zabel said...

Meghan, I really love this post. I remember learning of the diagnosis just a few days later...and being scared for you. I remember reading your text at 6am, and I was in a fog all day long at clinicals. I came home and researched it as much as I could. I knew it was a neural tube defect, and that was the extent of it. I quickly learned all about in fear for you and your family and what lied ahead of you. A few days later, I had found a lot of comfort because I knew that God was on your side. I prayed throughout the next three months... Morning, noon, and night, and often in between. Being pregnant at the same time was hard. I remember waiting in the preop room at Norton's probably just as nervous as you were. When they wheeled Baby Beckett out, he was welcomed by about 20-30 fans. He already had a walk of fame. And when the neurosurgeon stopped with him in the incubator, and I saw Beckett move his legs, it was like someone took the heaviest burden off my chest. It was like I was being told I had just hit the lottery. I knew right then and there that all those many nights I spent praying for you and the nights I knew you needed your time to be at peace with the diagnosis, and instead of piking up the phone( I didn't want youth feel like you had to explain anything to me) i chose to just pray.... He WAS listening. The day Beckett had to have his shunt placed and we waited in the waiting room for 5-6 hours... Theres no way i was leaving until i knew he was in recovery and doing ok. You told me that day, "thank you best friend for being here. I needed you." I had never felt so grateful. You have no idea how many times you were (and have been) that friend to me. I think Beckett has two of the best parents in this world. I am so happy it has been positive for the most part. He sure is one sweet handsome little man. Those beautiful blue eyes... They're so amazing. I know he has endless possibilities with parents like you guys. I love you so much BEST FRIEND and am so proud of you.

Autumn Zabel said...

I tried deleting the first post, (once i realized spell checker took over when I didn't want it to, but it wouldn't let me delete, so feel free to do so. Here's what I was trying to say the first time around... Lol. (Crossing my fingers for Internet service at my house soon... Using the iPhone for everything is hard! Especially on long messages!)

Im not sure if it saved in the blog... My phone was taking forever... But I wanted you to get my comment...

Meghan, I really love this post. I remember learning of the diagnosis just a few days later...and being scared for you. I remember reading your text at 6am, and I was in a fog all day long at clinicals. I came home and researched it as much as I could. I really only knew that it was a neural tube defect, and that was the extent of it. I quickly learned all about it in fear for you and your family and what was lying ahead of you.  A few days later, I had found a lot of comfort knowing that God was on your side. I prayed throughout the next three months... Morning, noon, and night, and often in between. Being pregnant at the same time was hard. I remember waiting in the preop room at Norton's probably just as nervous as you were. When they wheeled Baby Beckett out, he was welcomed by about 20-30 fans. He already had a walk of fame. When the neurosurgeon stopped with him in the incubator, I saw Beckett move his legs. It was like someone took the heaviest burden off my chest and I could breath easy for the first time in months. There wasn't a dry eye in the whole room. It was like I was being told I had just hit the lottery. I knew right then and there that all those many nights I spent praying for you and the nights I knew you needed your time to be at peace with the diagnosis, and instead of picking up the phone( I didn't want you to feel like you had to explain anything to me) i chose to just pray.  He WAS listening and answering. 

The day Beckett had to have his shunt placed and we waited in the waiting room for 5-6 hours... There was no way i was leaving until i knew he was in recovery and doing ok. You told me that day, "Thank you best friend for being here. I needed you today." I  had never felt so grateful. You have no idea how many times you were (and have been) THAT friend to me. I think Beckett has two of the best parents in this world. I am so happy it has been positive for all of his successes already. He sure is one sweet handsome little man. Those beautiful blue eyes... They're so amazing.  I know he has endless possibilities with parents like you guys. I love you so much BEST FRIEND and am so proud of you and your positive reaction during your Journey!!

Joanna said...

My favorite kind of story...happy endings and all. :) Love yoU!

Sandy said...

What a cute little boy!

Amanda said...

He is so adorable!
I have never heard of the letters to George - and yes I've already followed the link (yay for new blog!) and ordered the book.

Sounds like you had a great doctor, scratch that, an amazing doctor! And I'm sure you've heard of all of our horror stories to appreciate that (even though you couldn't know at the time).
Beckett is amazing - and absolutely adorable! I am so glad to 'know' you and Beckett and Paisley!