It’s been almost a month since Alton came home from the NICU and thought it was time for an update! If I haven’t mentioned it in previous updates, his official diagnosis after birth is bladder outlet obstruction, extreme hydrophrenosis, and prune belly.
The hydrophrenosis is under control and has gone from grade 5 to a stable grade 2 after the nephrostomy tube and now vesicostomy. We left the neph tube capped after his vesicostomy surgery and it’s doing it’s job, so we were able to remove the tube! We have a nephrology appointment later this month to find out next steps for testing kidney function. This is one thing we’ve been super nervous about but based on his biweekly labs things look promising!
His vesicostomy is what we call his “second belly button”. Literally looks like one between his actual belly button and his groin area. It is attached to his bladder and where his pee drains out of...we either put an incontinence pad in his diaper or secure a second diaper across the area to catch his pee. This is temporary while he grows, his bladder matures and we wait for some sort of reconstructive surgery on his bladder around 18 months or so. Depending on how his bladder develops (it is oddly shaped due to how much it expanded with the fluid and why he currently does not pee normally) there are several different options for procedures/surgeries he may need...we just don’t know until that time comes! We have appointments with urology every 2 weeks to monitor bladder & kidneys and make sure they stay stable until then.
And last is prune belly, if he truly has prune belly syndrome (which he has no actual genetic markers for it) it is on the least severe end of the spectrum. Several of his doctors have referred to it as pseudo prune belly because it mimics it in appearance but not in the internal complications that typically come with it. In one of the photos I posted you’ll notice how his belly fans out and is pretty large compared to the rest of him. Due to the excess fluid in utero his abdominal muscles are severely lacking & stretched (almost like diastisis recti in moms after pregnancy) The road to fixing this includes physical therapy (starting soon hopefully!) and potentially surgery in the future once he grows and we can get a better idea of how things are looking. Hopefully we can fix the problem with PT, the main concerns here are abdominal hernias and it will be harder and take longer for him to hit typical milestones (rolling, sitting, crawling, walking).
Overall we are so lucky and blessed because this whole ordeal and all of his diagnosis could have been (should have been) 1,000 times worse. His outcome so far is nothing short of a miracle and we are so thankful for everyone who did and continues to carry Alton in prayer ❤️ Will continue to update as he grows!
