The Beginning of Our Journey

3D image of Lizzy

 When I was 20 weeks pregnant we found out that our daughter had Spina Bifida. I had heard a little about Spina Bifida in my teens, but never really knew what it was. Then when we heard those words from the doctor "Your baby has Spina Bifida" we were floored. At that time all we wanted was to learn more on what SB was and what caused it. 

before I got to see my girl

I held everything together in the office and just listened to what the doctor had to say. Then on our way home it really hit me. All I could think was "Am I to blame? What could I have done to prevent this? Why us? " I was mad at the World at that time, because I had been told for 5 years that I would never have a child. Then to finally get pregnant and do everything to a T that the doctor told me to, and find out that our daughter was going to be born with this was the hardest thing ever.

on her way up to the NNICU

As time went on, we got more and more educated on what Spina Bifida was and what we should expect once she was born. Then the time came to get induced and have our little girl. As soon as she was born I got to see her for a split sec, before they took her into another room. Then before they took her up to the NNICU they brought her by for us to see her. The next morning they took her into surgery to close up the hole that was on her back. We didn't get to see her before sugery, but we were there right when she got out. It was 3 days after her surgery that we finally got to hold our little girl. Finally we were able to take her home.

day after 1st surgery

She was also diagnosed with hydrocephalus (fluid on the brain) while I was pregnant. Before she was a month old she had to undergo another surgery. This surgery was to try and releave some pressure off of her brain from the hydrocephalus. This surgery was called 3rd ventriculostomy (placing a hole in the floor of the third ventricle of the brain). After a week her hydrocephalus had not changed so her neurosurgen desided to go ahead and place a Ventriculoperitoneal shunt (also known as a VP shunt). After her shunt was placed and we finally got the number of the flow down she has been fine.

Lizzy and Matt (dada)

At almost a year old our daughter was diagnosed with scoliosis. We have fought to keep her surgeries down, since she had to go through so many in her first year of life. But we are learning that scoliosis is as stubborn as we are. We are now left with having to under go yet another surgery. This surgery will consist of a thing called VEPTR (Vertical Expandable Prosthetic Titanuim Rib).