Wis-CAN-sin here we come

I know some of you already know all this or at least bits and pieces of it but I figure I'll just recap and update on Natalie since this is a big week coming up for her:

Natalie was born with a birth defect called bladder exstrophy. It is a fairly rare (1 in 40,000 births)and fairly complex defect. Her bladder is outside her body and the bladder and urinary tract are split open. The skin, muscle, and pelvis bone are also open which is what allows the bladder to be outside. For some reason when the embryo was developing this area of her body didn't fuse together. Click here to read more about it. A few days after she was born she had sugery to correct this. They basically had to close the bladder, tuck it inside, then close the bone, muscle and skin on top of it. The surgery was initially successful, but everything opened back up while she was still in the hospital. This is why she came home without the cast--since everything including the pelvic bones had opened back up there was no reason to keep her immobilized. Originally, our doctors felt we should wait 6 months and then possibly try the surgery again. We were able to take her home and have had a very normal 2 months with her. She's not in any pain and other than some minimal care, it has not been a big issue that her bladder is outside.

After doing much research and talking to what we concluded were the 2 experts in the country on bladder exstrophy we have decided to take her to a doctor at the Children's Hospital of Wisconsin in Milwaukee. He feels it will be best for her bladder function in the long run if we do this closure surgery sooner rather than later so we are heading up there this week. She will have an appointment in the clinic on Tuesday and if everything looks good she will have surgery sometime on Wednesday. She will need to be in the hospital for approximately one week. I learned last time not to set my heart on a certain time table so I'm preparing myself for the fact that it could be longer but at this point it doesn't seem that it should be. Ben is coming up with me for the surgery while Annabelle and Katie stay with my parents. He'll come back to be with them for the *few days* (let's hope!) that Natalie has to stay in the hospital and then I will drive back with her. She'll be coming home in the same kind of cast that she had last time in the hospital--basically from her chest to her ankles. Even if this surgery is successful it is unclear whether she will need more in the future. It just depends on how well her urinary tract begins to function over time. I've tried to answer some of the more common questions we get. Please feel free to leave a comment and ask anything else.

Thank you so much to each of you that are praying for Natalie. I really can't tell you how much it means to us. While it is stressful to face another surgery and family separation, I cannot lose sight of the fact that we are blessed that Natalie's general health is well and this is an isolated issue for her. Whatever challenges may be ahead we can also look forward to much joy and happiness with our little sweetie pie.

I will be updating throughout the week so stay tuned...