Continence and Spina Bifida

[Jelly517]

My daughter was born with a myelocystocele, which is a rare form of closed spina bifida. We had her cord detethering much earlier due to the fact that she had a distended bladder.

Currently, she's 3 months post-surgery and her bladder function is still sketchy. She sometimes pees well, but sometimes she retains. Her volumes have been as high as 100 at times (though rare). We cath her every 3 hours (on average, sometimes 3.5-4 if she's having a good day).If we get a volume above 50, we scale back to 2 hours. Overnight, we do a 4 to 5 hour stretch, followed by 3 to 4 hours. Example: last cath 10:30 PM, then 3:30 AM, then 6:30 AM.

Usually after the 6:30 AM cath is the highest volume of the day. That cath usually sets the tone for the day. If it's really high, then I see generally bigger cath volumes throughout the day.

So far, though, I cannot predict when or seem to know why this happens. Her urologist is waiting to see how things go and she's scheduled for urodynamics in October.

I know that after this type of surgery, it can take up to a year for the bladder to recover. However, I'm not even sure exactly how her bladder functioned in the first place since she developed the distended bladder at 8 days old.

I guess I'm looking for any insight that can help me understand her bladder situation and what I should expect for the future.