The Surgery Details

I've been debating whether to share this on my blog, but then I figured that the people reading this are mostly good friends and family, or people who really care about Lily.  The details about the kind of surgery she got and how her life will be now are very unique.  Most likely you will never in your life meet another person with Bladder Exstrophy, it's really that rare.  That's what makes Lily so special to us and everyone.  The ultimate goal for people living with BE is to be "dry".  Dry meaning- going to the bathroom every 3 hours or so, and not leaking in between.  Also not having to wear pads or pull ups.  And although it seems like such a simple concept, it's actually a very complicated process.  The surgeons have to literally create from her body parts a way to do this.

When Lily was born, her bladder was on the outside of her body, and her pelvic bones were wide and apart about 5 inches.  Lily's first surgery was in Orange County when she was 2 days old.  The surgeon closed her bladder, put it back in her body, and fixed her pelvic bones.  We thought it was done and all we had to do.  However, we were totally wrong.  That surgery failed, and slowly her bladder came back out of her body.  So, that's when we heard of and flew cross country to see Dr Gearhart.  He said he could fix it and we would need to schedule that surgery right away.  It would be an intensive 6 week recovery that I would need to be there for.  So we did it.  It was a hard 6 weeks, but the surgery was a success.  Her bladder was closed and back in hr body.  But she was not continent yet.  She would be constantly leaking urine out into a diaper.  She would be like that for many years while her bladder grew and she got older.  We knew that someday she would need a second big surgery to get dry and continent.

So fast forward 5 years and here we are.  Over the last year, Lily has been suffering with chronic UTIs that can turn into Kidney infections because of her reflux.  It's been a nightmare of constant antibiotics and doctor visits to figure it out.  After meeting with Dr G this summer, we got a lot of info.  We learned that her bladder tissue is weak and cannot contract like a normal bladder.  This is actually very common among BE kids. Their cellular makeup is different.  So her bladder can not empty.  Although she was always leaking into a pull up, she still has lots of urine staying in her bladder causing infections.  So because of this info, Dr G was able to tell us the kind of surgery Lily needs to get dry.  Because her bladder can't empty, she would not be able to pee from her urethra, like a normal person.  She wouldn't be able to get it all out that way. Instead she will be cathing.  Not cathing through her urethra either.  Using her appendix, they make a pathway from her bladder up into her belly button, and she can cath through her belly button.  It's soooo hard to explain, but your appendix is like a hollow tube, and it's a useless organ.  So they connect it to the bladder and then up to the inside of her belly button.  Her belly button will look completely normal, but only we will know that there is an opening for her to empty her bladder there.  When Lily feels the urge to pee, she can go to the bathroom and stick a little catheter tube into her belly button and go that way instead.  I do realize that this is mind blowing!!  When I first heard of this, Lily was a baby, and I remember thinking "Oh there's no way Lily will have to do that.  She'll be able to get the other surgery for her to pee normally!"  Well I have learned that life doesn't always work out the way you'd hoped.  This is very different and was very hard for me to accept for a long time.  I had to get over the idea of her ever peeing normally.  It's a concept so simple that I always took for granted, and now when I go the bathroom, I think of her EVERY time.  The plus side to this surgery is that they close off her bladder neck, so that she can't leak from below.  She'll be dry and not have to wear pads or anything.  She is very excited to get to wear underwear finally!

So that's the surgery she got last Wednesday.  There were a lot of parts within the surgery that all took so long.  And when he was in there he found some damage to her ureters and bladder.  So that took a little extra time to fix.  The surgery that was supposed to be around 8 hours was actually 14.  So crazy and scary. But we were in the best hands!  He really worked miracles on her little body, both when she was a baby and now.  We are so grateful to be one of his patients and part of this network of BE families at Hopkins.  It's amazing the things they are capable of here.  One thing that Dr G told us before surgery was that the cathing through the belly button is not a forever thing.  Science is advancing every year, and he really thinks this is a 10 year plan.  It's very possible things will change and she can either get a brand new bladder grown from her own cells or who knows.  The skies the limit really.  So for now, this is Lily's future.  She'll be cathing for a long time and this will be her new normal.  It will be a different bathroom routine than most, but that's ok. Different isn't bad!