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X posted in health and healing.
I gave birth to a beautiful baby boy who has to get surgery for bladder exstrophy this coming month. I was just wondering if there were any other mom's out there who's child had this anomaly and was hoping anyone could share their experience .

For that matter, if anyone wants to share their experience with their baby's surgery and recovery I would really appreciate it.

Thanks.
 

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Congratulations on your new baby!


I don't have any experience with bladder exstrophy, so I hope someone else comes by to give you some better info, but thought I would share what little I know about bladder surgery. DD had surgery at 5 months and 11 months for VUR and dysfunctioning bladder. She now has a vesicostomy which is a urinary diversion where they make a small hole in both the bladder and abdomen and then sew them together so that her bladder can constantly drain through her abdomen instead of her urethra. It keeps urine from sitting in the bladder so it can't move back into her kidneys (b/c of the VUR). After her surgery, she had a catheter in her urethra and through the stoma in her abdomen which stayed in for a few days.

Obviously dd's surgery was much less complicated, but she recovered well and very and quickly. Babies are so amazing!
Pain management was a big thing for us at first. Not so much from the incision but from bladder spasms. Ditropan was a big help for that and keeping her well hydrated, which was more difficult when she was on Ditropan.

Don't know if any of this was helpful, but I think with the bladder surgery he would have a similar stoma and that the catheters would stay in for much longer. Will you be doing the pelvic surgery at the same time?

Congrats again on your sweet bundle of joy!
 
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