Christel - posted on 01/23/2009 ( 85 moms have responded )
All I'm asking for is for you to read this. if anyone can help please I need it.
I have a 4month 1 week old baby girl. The doctors have no clue on what is wrong with her. I need any help I can get out there. She was born with low tone in the arms, tremors. Her tremors are what’s waking her. Her body shakes, mainly her arms, its a little vocal too. She had her first tear the day after she was born. It seems as though she is in pain all day long. She has a g-button. She fights you often, (arches her body). Does not like to be held, or touched. Her hands she hates anyone touching. And trying to comfort her is never been there. Her sleep is the hardest. She has never really slept a whole lot, and now we are talking maybe 6-8 hours or less a day. I'm not a hundred % sure how much during the night she gets. If I'm lucky I might get her down for an hour or two. Her whites of her eyes have always been a grey color. She was Jaundices when she was born. She had fluid around the brain.
I had a perfect Pregnancy. I had a little kankles, and acid tummy, maybe a headache once in a while. I never got sick or vomited or cried or anything, I got fat. So I have to say it was perfect.
Delivery was a hard. All planned to have her 9/13/08. They gave me a pill 6am, nothing happened tell 12 noon sharp.. Water broke, and then it was hard labor for 6 hours. I was off the page with pain and how fast and how many were coming. After 6 hours I got the Epidural and it was heaven. I couldn't feel a thing. About 2am they decided to get me off my happy drug and I pushed for 2 hours after that. Not to be to Graphic but I tore so bad it took them 45 min. to sew me back up.
So All in all she has had MRI's EEG's, Ultra sounds, tons of blood work and I think there was a cat scan too. All in all we still have no answers.
If anyone has any ideas, please let me no, I don't no how much time we have or if it's going to get worse.
At 4 months 1week, she can't hold her head, she does not grab toys, I don't think she can see all that well. All the mile stones that she should have already past she has not.
Your friend Christel
P.S. the doctors have called it a Brain abnormality, or Encephalopathy. Do to the three EEGs she had one of the eeg's came back with a slight pause of the brain.