Our Story.

My name is Jennifer. I am married to an awesome guy, Jack of all trades, Jamie. I graduated nursing school in May 2002. Got hitched on June 15, 2002. Enjoyed being just the 2 of us for a few years. We moved into our first house we purchased together on September 1, 2005. April 2006 came and blessed us with a little baby boy named James. Great times! Never thought i could love anything that much. It is awesome watching a child grow. August 2008 came around and bless with a beautifal daughter Samantha. Even better times. We have 2 little blessings.

Back up to February 2008. I was 17 weeks pregnant and my world was turned upside down. Was advised by my primary OB to go see a specialist, there could possibly be something wrong with the baby. Well, we went, Jamie and I, to the specialist. Darkness and sadness came over me, yes, indeed there was something wrong with my baby, but the good news was it was a girl! I remember this very vividly. She said " Your baby does have an opening in her spine, Spina Bifida." She counted down the spinal column, down to where the opening was, estimating it was an L4 myelomeningocele. The doctor asked me, "I have to ask you though , if you want to have an abortion?" We already knew that before we even went to see the doctor , that no matter what, we were not having an abortion. So , i told her no way. She explained, "the baby will have trouble walking, some need a wheel chair, some walk with a walker or forearm crutches, some walk unassisted, some need bracing for their legs, they usually have bowel and bladder complications, and on and on...

August 4, 2008: I went in for an amniocentesis to see if her lungs were mature enough to induce the following day. Well another scare, the baby was not moving. I did not have much amniotic fluid, and yes her bladder was not emptying, so i knew she was going to have a bladder issue and she would have to be catheterized if she made it out alive. So there was all of this rushing around, the doctor trying to make a decision of going ahead and delivering. Ok, yes we are delivering today via urgent(not emergency) c-section. Ok now my blood pressure is high, everthing is a whirlwind. Jamie is also nervous, calling our parents and trying to keep me calm. The doctor is not in the hospital, so she makes it and Samantha arrives kicking and screaming. which kicking was a good thing, at least i knew she could move her legs, to what extent i did not know. I got to see her briefly. They wrapped her back in a sterile plastic wrap, like cling wrap.

So, Jamie got to see the myelomeningocele (medical term for spina bifida) on her back. I did not get to see it, unfortunately, before she had her surgery at 6 hours old to close the open sac on her back that contained spinal fluid and some spinal nerves. I did get to see her shortly after and she was on a ventilator, which i was prepared for from all of the questions we asked the doctors while i was pregnant with her. The only difference is, this is reality. She was sooo beautiful and been through so much.

Sam in the NICU

Those and the following few days were the absolute hardest hours of my entire life!

So I was in the hospital for 4 nights. Samantha came home on the 9th day of being in the hospital. She was in the nicu for the majority of the time and then went to progressive care nursery which was a little better. She had her own little cubicle area. I dressed her in her coming home outfit and she got to ride home in a car bed, which is a carseat where she is on her belly strapped into the carseat. She had to sleep on her side or belly for 3 weeks to let the incision heal.

Sam and I in Progressive icu

James loved on her and held her and kissed her when we came home! I had all kinds of emotions. I was in love with my babies. . . however had some fears about the future and unknowns of , will sam beable to walk, will she even crawl, how will our life be from now on, how will she do when it's time for school, what kinds of therapy will occur, just sooooo soo many questions. . . . .



Now, a little over a year later. James is 3. Sam 13 months. Sam can now crawl all over the house. There is still going to be mobility issues, but it is a wait and see kind of thing. We do not know how she will walk, unassisted, or with crutches/walker, or what. Both of the kids are happy. James is a typical 3 year old, likes to do whatever i ask him not to do, and color on my couch. Samantha is super proud of herself for recently figuring out how to crawl and get into mischief. Her favorite words are "Thank You" or in her language "Tant Too." Amazing child. Very different than James. It is amazing how each individual child is different. Sam can take some steps with assistance now, which is very promising. The spina bifida is only part of her and does not define all of her. She does not even know it yet.

We take her to the Shriner's Hospital, these people are great and help sooo many kids. It was very breathtaking and overwhelming the first moment i walked into the doors of the Shriner's Hospital. I did not know there were so many kids that had things wrong with them. There were kids walking with walkers, had missing limbs, and several other issues. The Shriner's provide every single service to us and these kids for absolutely no cost. I mean this equipment for some kids cost thousands of dollars.

Sam at 4 months old

I am blessed with all of this. An awesome family. A job. A place i call home. The Shriner's Hospital. The professionals that took care of my baby girl in the hospital, her care afterwards, and still do. Everyday  i open my eyes and know i am where i belong.....

Updates :

Samantha 3 months old and first afo braces

Sam 9 months old

Sammy at Shriner's Hospital, second pair of afo braces