Warning- I'm just going to lay it out here because for you to understand how amazing today was I have to give details about Jia's anatomy. I can talk about it like I'm talking about my toe so I apologize if it's too graphic.
Jia was born with a colorectal deformity. Most girls are born with 3 openings, Jia was born with one, one that mostly resembled a vagina. Everything came out of that one opening. After several surgeries in China she had 2 openings, one that resembled a vagina and one for poop. That is what she came home with and has had until now. She knows when poop is coming but does not have the ability to stop it. They don't think she ever will. We do an enema for an hour every day to clean her out and she has no problems with that. She wears diapers because she doesn't have control of her urine.
The point of this surgery was to separate the vagina and the urethra. We were told in March that her urethra didn't look good and she would have to have something called a vesicostomy (a hole in her abdomen that urine would drain out of). The purpose of this was to give her bladder a break as it was under a lot of stress that could lead to kidney and bladder infections. They could do this through catheterizations but her urethra ended too far in the vagina to cath. therefore she would have to have the vesicostomy. After a year they would consider taking down the vesicostomy and putting in a port to cath her through her abdomen if her bladder could improve. During the year she would not be able to swim or sit in a bathtub. I know it's only a year but I had a really hard time thinking about that since she LOVES the water. We were told yesterday that there was a chance of suprapubic catheter if things looked better than they expected. This would give her a litte more flexibility than the vesicostomy but still not a great outcome.
Guess which one she got? NEITHER!!! They were able to pull her urethra down to create a normal opening! If her common channel was less than 3cm they should've been able to create the normal opening. Jia's was 3.5 and they were still able to do it! We still may have to do intermittent catheterizations if her bladder doesn't improve but we are praying for that bladder starting NOW! Do you know what that means? Yep, she can swim! Another huge blessing was that the surgery only lasted 4 hours. We were originally told 4-6, then 8 hours but she was out in 4!
I completely believe God answered our prayers for our sweet girl. Her road ahead is not going to be easy but it is so much better than what we were first told. I am so thankful and humbled by all of you who prayed for her! Please continue to pray as we have been told she may go 7 days without food or water for her little body to heal. It will be at least 4 days and possibly 10. She will be fed through her PICC line. Also, pray for that bladder to grow and heal over the next few months so she can have urinary control withouth catheterizations.
I know I rambled and probably have typos but wanted to explain it as best I could. Much love to you all!
Jia was born with a colorectal deformity. Most girls are born with 3 openings, Jia was born with one, one that mostly resembled a vagina. Everything came out of that one opening. After several surgeries in China she had 2 openings, one that resembled a vagina and one for poop. That is what she came home with and has had until now. She knows when poop is coming but does not have the ability to stop it. They don't think she ever will. We do an enema for an hour every day to clean her out and she has no problems with that. She wears diapers because she doesn't have control of her urine.
The point of this surgery was to separate the vagina and the urethra. We were told in March that her urethra didn't look good and she would have to have something called a vesicostomy (a hole in her abdomen that urine would drain out of). The purpose of this was to give her bladder a break as it was under a lot of stress that could lead to kidney and bladder infections. They could do this through catheterizations but her urethra ended too far in the vagina to cath. therefore she would have to have the vesicostomy. After a year they would consider taking down the vesicostomy and putting in a port to cath her through her abdomen if her bladder could improve. During the year she would not be able to swim or sit in a bathtub. I know it's only a year but I had a really hard time thinking about that since she LOVES the water. We were told yesterday that there was a chance of suprapubic catheter if things looked better than they expected. This would give her a litte more flexibility than the vesicostomy but still not a great outcome.
Guess which one she got? NEITHER!!! They were able to pull her urethra down to create a normal opening! If her common channel was less than 3cm they should've been able to create the normal opening. Jia's was 3.5 and they were still able to do it! We still may have to do intermittent catheterizations if her bladder doesn't improve but we are praying for that bladder starting NOW! Do you know what that means? Yep, she can swim! Another huge blessing was that the surgery only lasted 4 hours. We were originally told 4-6, then 8 hours but she was out in 4!
I completely believe God answered our prayers for our sweet girl. Her road ahead is not going to be easy but it is so much better than what we were first told. I am so thankful and humbled by all of you who prayed for her! Please continue to pray as we have been told she may go 7 days without food or water for her little body to heal. It will be at least 4 days and possibly 10. She will be fed through her PICC line. Also, pray for that bladder to grow and heal over the next few months so she can have urinary control withouth catheterizations.
I know I rambled and probably have typos but wanted to explain it as best I could. Much love to you all!
2 comments:
Wow how awesome Cindy! Will be praying that Jia's bladder will heal quickly and that she will be able to have control over that.So glad she will be able to continue to enjoy swimming!
So very thankful!!! We will be praying for your sweet girl, that her pain is managed and she is able to eat soon! So sad we are not there with you!
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