Since everyone was sharing their stories on here this week, I thought I'd jump on the bandwagon... to satisfy people's curiosity, as well as offer hope, tips and advice to others on their PUV journey. I would have given anything to have the group before giving birth, the web is full of pesimism, which makes no sense to me, b/c most of us are sharing "success" stories. We learned that Jackson was sick at my boy-or-girl US, (at 19 weeks). I had been very sick for 4 weeks with (probably) meningitis so I was sent to a high-risk Dr for my US - God works in mysterious ways!! We were so busy looking for a penis, that we never noticed the gigantic black hole that was Jackson's bladder... bigger than the whole rest of him! We were given terrible news and statistics, and advised to consider termination. Then, we got a new Dr - though it was a HUGE fight with insurance - but again, God was working on his timetable, not ours, and he got us exactly where we needed to be. We ended up at Geisinger for bi-weekly ultrasounds for the next 19 weeks. Jackson's bladder was tapped once (at 20 weeks) for 65cc urine. All genetic tests came back "normal". My fluid levels remained slightly high throughout the pregnancy - Jackson had created a "urachus" (an opening from the bladder through the umbilical cord to the sac of fluids). He saved his own life! He cont'd to measure very large, so I had my csection at 38 weeks. We were prepared for a baby who, IF he survived delivery would have Pseudo-prune-belly syndrome (b/c his testes had dropped) and physical/mental disabilities - because that is what were told. Jackson was BIG - almost 9 lbs but it was all water weight - his eyelids were so swollen that he could not open them!! I wish someone had prepared us for how swollen he was. By the time he came home on day 5, he was down to 7 lbs and looked "normal". He had to have a vesicostomy done on day 2, because he had "urethral atresia" - his urethra did not connect in the middle. Everything looked good though, and we went home, ecstatic that he was not realy as sick as were expecting.
Then when he was 2 weeks old, his personality changed drastically. It is embarrassing to admit this, but I am a pediatric nurse. We knew he was sick, but we couldn't explain it. We saw 4 different Drs that week and we were assured each time that we were just worrying. Until we finally took him to the ER where he almost died in my arms... he had a UTI, had become septic, was completely dehydrated and his electrolytes were all at critical levels. When I look back at pix from the week, he looks soooo sick to me, but at the time, it was happening slowly and he was compensating so well, that we didn't realize how bad he looked. My Mother In Law was staying with us, and she is also a Pediatric nurse! We spent 10 days at Hershey Med Center and Geisinger Med Center and went home relieved, again. We found that his kidneys do not absorb and regulate sodium like they should, so he was started on salt supplements - which no one told us to add to his bottles... we were squirting it in his mouth and he would fight us terribly, until one day I squirted it in my mouth and was shocked by how painfully burning it was to my throat - poor kid!!!
Jackson has had a total of 10 UTIs in his year of life... we've gotten real good at detecting them and intervening. We're actually so good now, that we know when a UTI is coming, even before his urine dips dirty!!! We've learned to read his signs... irritability & decreased appetite. We dip his urine at home a few times weekly, at any sign that something is not right. He easily picks up other viruses, which wears down his immune system and leaves him susceptible to UTIs. He conts to take a daily antibiotic, which he was FINALLY started on after his 6th UTI. He had his vesicostomy reversed (and valves ablated) in October when he was 9 months old... and then the UTIs stopped for 2 months. (Even though his surgeon swears that the vesicostomy is a one-way-valve and that no bacteria could enter his bladder there?!?!?) We tried using maxi pads over his vesicostomy site at first, but it was unsuccessful, so we just put size 4 diapers on him and he did well.
Jackson also had a hypospadia (his pee hole was on the underside, rather then on the tip like it should have been) - this corrective surgery was done in January, when they found that he had some scar tissue in his urethra from the ablated scars. We knew something was going on, because he had begun to "concentrate and strain" whenever he would pee.
He currently is "concentrating" and "straining" and even appears to be in pain sometimes when he pees again, so we moved up his Uro appt to two weeks from now. We'll also have an ultrasound done to see if his kidneys and ureters are any LESS swollen (his ureters have been HUGE and his kidneys have been "big, full of fluid and the same color as his liver" on US. So... we'll see). His belly is still quite large compared to the rest of his scrawny little body, so I won't be surprised if they haven't shrunk at all. We are told, though that he does NOT have prune belly and that he does NOT have reflux. YAY!!! His bladder wall is also very thick and was shaped like a snowman before, we're hoping it will be more circular with this US!! His creatnine runs at 0.4-0.5 which is technically WNL.
Jackson is our miracle boy - so inspiring when I see him hitting all of his milestones right on time or even a little early!! Though he's spent many many many days in the hosp, at Dr appts, fighting infections, or recovering from surgeries he continues to be the happiest, most patient, most cuddly kid I've ever met - and I am so glad he's mine!!
Sorry this sort of goes in circles... there's a lot to cover and I tried to keep it manageable. I typed it earlier but FB froze and I lost everything! I keep a blog of his issues, so that I can keep everything straight! Feel free to ask anything or comment... I love hearring other's stories, learning their tips, and maybe even helping out someone out there!!!
