CGaskill
04-17-2009, 03:20 PM
Hi,
When we went in for a routine ultrasound at 28 months the doctor called me the next day to come in and they thought that the baby had anacephaly. We were advised to see a high risk doctor (two days later) and he found that there was brain matter but it was smushed because of so much fluid, he thought the baby may have had some type of stroke. He said with some intervention we could help the baby. We decided to have the baby boy in a hospital away from home closest to a reknowned children's hospital. When we went in for a tour and to meet the doctor who would perform the c-section and to meet the Riley team, they did another Ultrasound (34 weeks at this time). It was then they discovered Graysen's (my son) neural tube defect. I learned that my son had Spina Bifida Myleo. We went from a non viable pregnancy to a stroke and some unknowns, to the diagnosis.
Graysen was delivered a week later and had surgery on his back the day he was born. He had a VP shunt put in 2 days later. From there he spent 55 days in the hospital. He suffered from TPN Choelestasis which was causing high bilirubin levels, went through 3 vp shunt revisions, several procedures including a central line and a bronchiolscope as he was satting low and we were looking for obstructions. During a "discovery" Upper GI we found that Graysen had a malrotating bowel and had to have a malrotation surgery with appendectomy. With all these procedures he was constantly being cathed. This caused a false passage and nurses were having trouble cathing him. We decided to have a vescicostomy that will be reversed when he is ready to potty train. Fortunately, the short times he wasn't cathed he could void on his own. Knock on wood he has had no trouble with bowels.
He failed every newborn test, hearing, car seat, sleep. However he is vocalizing, listening, in a regular car seat and oxygen free. We have therapist that come over 4 times a week for occupational, physical and speech. I am so overwhelmed with information that I don't know what to do all the time. I don't even know what Graysen's L (level) is . Several people ask and I have no idea. The doctors and therapist say he will walk. He has spontaneous movement with his legs and good tone although he does not move them all the time. He reacts to tickling feet, inside knees etc.
Our biggest challenge is his head control. If anyone has any suggestions on how I can help him with his head control I would be so grateful.
So sorry I babbled. I want to help my son. He is such a good baby with a smile that lights up a room and he laughs so hard it makes you cry.
Thank you for every post that is on this sight and for sharing.
Christina & Graysen
When we went in for a routine ultrasound at 28 months the doctor called me the next day to come in and they thought that the baby had anacephaly. We were advised to see a high risk doctor (two days later) and he found that there was brain matter but it was smushed because of so much fluid, he thought the baby may have had some type of stroke. He said with some intervention we could help the baby. We decided to have the baby boy in a hospital away from home closest to a reknowned children's hospital. When we went in for a tour and to meet the doctor who would perform the c-section and to meet the Riley team, they did another Ultrasound (34 weeks at this time). It was then they discovered Graysen's (my son) neural tube defect. I learned that my son had Spina Bifida Myleo. We went from a non viable pregnancy to a stroke and some unknowns, to the diagnosis.
Graysen was delivered a week later and had surgery on his back the day he was born. He had a VP shunt put in 2 days later. From there he spent 55 days in the hospital. He suffered from TPN Choelestasis which was causing high bilirubin levels, went through 3 vp shunt revisions, several procedures including a central line and a bronchiolscope as he was satting low and we were looking for obstructions. During a "discovery" Upper GI we found that Graysen had a malrotating bowel and had to have a malrotation surgery with appendectomy. With all these procedures he was constantly being cathed. This caused a false passage and nurses were having trouble cathing him. We decided to have a vescicostomy that will be reversed when he is ready to potty train. Fortunately, the short times he wasn't cathed he could void on his own. Knock on wood he has had no trouble with bowels.
He failed every newborn test, hearing, car seat, sleep. However he is vocalizing, listening, in a regular car seat and oxygen free. We have therapist that come over 4 times a week for occupational, physical and speech. I am so overwhelmed with information that I don't know what to do all the time. I don't even know what Graysen's L (level) is . Several people ask and I have no idea. The doctors and therapist say he will walk. He has spontaneous movement with his legs and good tone although he does not move them all the time. He reacts to tickling feet, inside knees etc.
Our biggest challenge is his head control. If anyone has any suggestions on how I can help him with his head control I would be so grateful.
So sorry I babbled. I want to help my son. He is such a good baby with a smile that lights up a room and he laughs so hard it makes you cry.
Thank you for every post that is on this sight and for sharing.
Christina & Graysen