horschsprungs disease
ElysMommy - 12:16pm May 12, 2012 ESTOn April 11th my daughter Elynn Rose was born 5lbs 10oz. She was born full term, but didn't poop for the first 24 hours. They kept us another night and still no poop. They did xrays and that showed what they called a shadow in her intestines. The next day she had surgery and they found that her small intestines weren't connected to her large. Well they connected them, she healed and even started pooping, but still couldnt digest food properly. Her surgeon did different tests and saw that her colon wasn't working right, so he did a biopsy and it turns out she has hirschsprungs disease. She's been in.the nicu for a month now and its been the worse time of my life. She has surgery yesterday to have an illiostomy bag put on her small intestines and can't have the corrective surgery for another year.
Is anyone else going through this? I just wanna know what I'm in for as far as the bag and how its going to effect her development.
liz loschinskey
- May 13, 2012 3:45 am
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Hello and welcome to share!!!
Congratulations on the birth of Elynn!
I have not gone through this, however, I would ASSume that this will not effect your daughter developmentally.
Ask your hospital social workers about getting some type of early intervention or birth-three to help you and your daughter out. My daughter was 3 months early and qualified for early intervention due to her gestational age and their physical therapies helped my daughter walk by 15 months. We used every thing offered from Early Intervention to keep her developmentally on track.
She's 32 months now and testing at 3+ years.
Doesn't hurt to ask!
Love and Light and she is beautiful!!
Liz
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esgf
- May 16, 2012 2:12 pm
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Abigail's Mom (29 weeks, 3/21/05) |
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Welcome to Share and Congratulations on the birth of your daughter! The NICU is such a trying time. I am sorry that I don't have any specific experience with this disease but I would go to each appt with a list of questions, don't be afraid to enlist the help of your case manager in the NICU. They are a great resource. Also as Liz said enlist the help of Early intervention services and communicate often with your main pediatrician. If they don't seem comfortable with the situation see if you can find one that is.
Good luck and I hope some of the moms experienced with this will jump on.
We hope to see you often.
Ellen
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