Hi My name is Lori, my husband and I had our first child born May 25th 1999. It was a "Boy" We named him Jacob Jason, he was two month's premature. He was born weighing 3 pounds 5 ounces.
My story really begins about a month prier to delivering Jacob. When I was around 26 or 27 weeks pregnant I started bleeding. I was going into labor then. They gave me all kinds of medication to stop it, which was successful. But my problems didn't stop there. They kept measuring me and saying I measured 35 weeks when I was only 26. That continued to be a problem. At that point they started doing a lot of ultra sounds to see how the baby looked! That's kind of when all the real scare set in! The more they study the ultra sound the problems they told me they saw. My husband and I were a nervous wreck. (To say the least) Little did we know that this was the beginning to something way more serious, beyond even our wildest imagination!!! When they couldn't stop me from going into labor any more they said I was going to have my baby early and to prepare for the worst. They told me both his feet were clubbed. They told me he had webbed fingers and that his body part's didn't measure up right. Jacob surprised us all!!! In several different ways!!!!!! Being so little at birth they gave me a quick glimpse of him before they rushed him away! I'll never forget how cute he looked! I was never so proud!!!! Anyways only one thing about his feature's they had talked about was true. He was born with a severe left club foot. He's 4 years old now and it has been corrected to the best of the doctor's abilities. (We had to have two different specialist attempt to get his foot in a position to wear he would be able to stand on it) He didn't learn to walk until he was 3 years old. He lived in cast for the first 2 and a half years of his life! After Jacob's birth they wanted to genetically test him because of all the complication's I had carrying him and for the reason's being he had some deformities (the doctor's called it). 3 days later we were given the news that our son had 49xxxxy syndrome. Tears still fill my eyes when I say that or when I think about it! They had no information to give us. My husband went to several different libraries just looking for anything. There was nothing. When we first found this web site on the computer, I felt the most relieved since Jacob was born. I had just felt so alone, wondering what will Jacob learn, what does the future hold, everything!! But now with other families to communicate with I feel so happy!
So that was my horrible experience finding out and trying to cope. We've moved on and are dealing with a lot of other issues now with Jacob! But like a lot of the other parents have wrote, Jacob is a very happy boy. Very loving. He was always a great baby. Even with all the cast he had to have for his club foot. Jacob was also born with a cleft palate. He came home on special bottles. And at 4 years old he is still for the most part only eating 2's or3's jar baby food. He has been in occupational therapy for 2 years. For some reason he doesn't want to chew his food. He stores it in the roof of his mouth! I am constantly feeding him, trying to keep him full. One of my greatest concerns for Jacob is not talking. Jacob is very vocal with sounds. But the only word he can say is Ma, Ma! Jacob is very good natured. He has a little sister now and she just turned 1. She has really been a blessing for Jacob. She just loves him and he loves her. They kiss each other all day! But the interesting thing is that Jacob would never fight back when he was around children. They would take things from him and he would just sit there. Now my little guy has become a fighter. He likes certain things. Mainly Elmo and trucks!!!!
Jacob tends to have a lot of tantrums or just gets frustrated very easily. It's best to keep him busy and to know what he wants. I'm sorry to have rambled on but like all of you, there's so much to tell about our special little guys! I hope if you have any question's or want to talk you'll contact me! I'm always interested to hear from other parents who are dealing with this!Submitted by: lorikay30@aol.com
