Taylor's page!
Taylor age 3 with her sister Alyssa 6 mo old
Taylor's Story---Submitted by Dana Graves
Taylor Rose Graves was born on Nov. 12, 1996. Her story is a very unique one in that she was born with a problem that most people have never even heard of. I found out I was pregnant in Feb. of 1996. We were ecstatic! After trying for 5 months to get pregnant, it was a great joy. Everything was wonderful with the pregnancy. No morning sickness, no problems of any kind. When I was 5 months along, we went to have a sonogram to find out the sex of our baby. We were having a girl! We were both thrilled. We also found out that I would have another sonogram in 2 months to check on the placenta that was a little low.
Two months went by and I was excited to see my beautiful baby again. Unfortunately, I was in for some very devastating news. Your baby has hydrocephalus and myelomeningocele, I was told. What this meant, I had no idea. All I knew was that I was going to be sent to a specialist that afternoon and that I should call my husband right away.
Thankfully, we have a wonderful hospital in our town, so we did not have to travel far away to see the specialist. They did confirm what the OB-Gyn had told me. They explained in greater detail what we were up against, it was Spina Bifida. However, as with most medical professionals, they have to give you the worst case scenario. This was horrifying for both of us.
As the next two months went by, we had an amniocentesis done, and many other sonograms, and many tears cried. How could this of happened to us? What did we do wrong? But unfortunately, nothing could comfort us because everything was so unknown. What would she be like? Would she be in a wheelchair her whole life? Would she be mentally retarded? All these things were possibilities.
At last the day came when she was to be born. On Nov. 12th, we went to the hospital for a c-section. Not only was this scary because of our special situation, it was also scary because I had never been in the hospital before, let alone had surgery. At 8:30am, I heard the cry of relief. Taylor Rose Graves was born. 6 1/2 pounds, 19 inches. She was out, her head was not enlarged, but she did have a hole the size of a quarter, near her rear end. I thought, OK I know what I'm up against, now I can handle it.
After many tests were ran, they decided to go ahead and put a shunt in as well as her back surgery. At 6pm that evening, only 10 hours old, she was taken to surgery. What a way to start life! I couldn't see her after surgery because she was in the NICU, and I had just had surgery myself. So her father would go down and video tape her, and then bring it to me so I could see her. The surgery went well and after a couple of days I was able to go be with her and feed her, which had to be done very carefully because of her back. Two more days went by of her being observed and watched by the doctors, they said she was going to be able to go home when I did. We were thrilled! The thought of leaving her there and going home was unbearable. Now, after many doctor visits and therapy. She is doing great! We have had no problems with her shunt.
Update as of 02/99: Taylor is doing great she can walk totally on her own but, she does have small braces that fit inside her shoes that she wears when we are out. She is still not cathed, but trying to potty train. And she is in Pre-school and loves it!
Dana Graves
e-mail at RGrave13@aol.com
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