dkagami
03-14-2010, 04:00 AM
This is our first child and at our 20 week ultra sound a bubble was found on our babys back. I was sent to a high risk doctor and they confirmed that it was Spina Bifida. As time progressed we learned that she also has Chiari Malformation II and bilateral club feet. She made it to term and weighed 6lbs 9oz. We named her Kaiya Marie Aiko Kagami and within her first 24 hours of being born she had her myelomeningecele repair. And a VP shunt placed just 7 days after her back surgery but she came through both surgeries really well. She was in the hospital for a total of two weeks; we couldn't wait to take her home. Before we could take her home she had her first set of casts put on her legs. These were to fix the club feet, she would get new ones put on every week or so for a couple of months to manipulate her legs and feet. Because she was in breach position the whole time I was pregnant she had multiple contractures as well. Meaning her legs we bent at the hip toward her face, basically touching her face. She was unable at the time to really move her legs and we couldn't even bring them down to normal position. The whole time I was pregnant the doctors never saw any leg movement, and we didn't know what to expect when she came out but were prepared for the worst. As time went on and new cast put on she was moving her legs constantly. She even managed to slip out of her casts, which we were told by her ortho doc has never happened to him with a myelo patient. They did have to do a heel chord release (where they cut her achiles tendon), which went well but she had her cast off within a week and we had to move to the ponseti brace so she couldn't wiggle out As of today she has seen her Ortho and there was a fear that her hips were out of socket (major surgery). But thank goodness everything looked great when he did x-rays, so he didn't recommend surgery. The doctor also seems to think that she has a good sensation level which will help her in the future when we get to the walking stages. She was wearing her Ponsetti Bar 23 hrs a day for about 3 months and they are looking great so we are now down to 12 hrs a day Kaiya is our little miracle and I can't imagine our lives with out her. I remember when we found out about her condition and they were telling us all these horrible things that could be wrong with our baby, but I just couldn't let her go. After I heard that little heart beat on the monitor there was no way I just give up on her. I thank god everyday for such a precious gift. Whatever she has to go through she takes in stride and it doesn't seem to slow her down much She is strong and stubborn but she is our little angel :)
We look foward to watching her grow and show those doctors all she can do :)
Hope to talk with other families who are dealing with the same issues.
Danielle:signs116:
We look foward to watching her grow and show those doctors all she can do :)
Hope to talk with other families who are dealing with the same issues.
Danielle:signs116: