32 weeks....8 months...getting closer!
We may need to actually start preparing.
No good pictures today, but here is his sweet profile.
This may be your first post of info, so I'll give more overall details.I wish I could say things are looking great. They're not, but we do have some positives!His brain looks perfect, as does his heart. They looked intensely at both again.He is measuring in the 98th percentile overall.The size of an average 36 week baby. Weighing an estimated 6 lbs 14oz (yes, with 8 weeks to go. I take this info with a grain of salt, but all measurements were 97th percentile or higher, so he won't be a little guy if we make it to 40 weeks.) This appointment he was classified with accelerated growth, but they aren't concerned at this point. Big babies tend to do better when they have to fight for their life, so here's hoping it helps him out!Now the bad news. (Specific details and measurements are mostly for my ability to easily reference in the future.)Bilateral club foot is still visible (not something we expect to go away.)The urinary tract looks worse. Both kidneys show hydronephrosis (too much fluid in the kidney). Anything over 7mm is too much at this point. Right shows 12.2mm and left 9.7mm. The right kidney still looks otherwise healthy. The left they were unable to identify a clear perimeter and are more concerned that it may not be otherwise healthy, but that is yet unclear.Both ureters are still classified as megaureters and appeared worse than 4 weeks ago. The right now looks like one big lake. The left seemed like it may still have some curve to it and was more like a long oval than a big circle.The bladder is most concerning this time. While it has been classified as prominent in all scans, and thickening of the wall was noted at 22 weeks, it's never been OBVIOUSLY too large. This time, it is. As soon as the abdomen came up on the screen, my heart sank. There was a large, black mass taking up most of the abdomen. I asked if the giant black hole was the bladder or maybe the stomach. She replied that she was still trying to map it all out. That was not reassuring. She found the stomach, which I didn't recognize because it wasn't a nice round circle this time. As the doc said, it's turned into a pancake. The bladder is so large, it has pressed up into the upper abdominal cavity and is smashing the stomach. It may also be why it was difficult to identify the left kidney and it's surrounding structures.We are also back to polyhydramnios (too much amniotic fluid) but it's still mild. And again, reassuring that we aren't too low on fluid. Fluid means his lungs and extremities can continue to develop properly. It also means his urinary tract is doing what it is supposed to, at least to some degree. Of course, it increases my discomfort but so far we've only had 4 random days that were unbearable. Here's hoping it stays mild and I can stay somewhat comfortable.So what does this all mean?Well, the doc is more and more convinced that it is likely Prune Belly Syndrome, also known as Eagle-Barrett Syndrome. This isn't good news. In simplest terms, this condition is classified by urinary tract malformations and the partial or full absence of abdominal muscles.Why is this most likely?Well it's pretty much the only syndrome that correlates the bilateral club foot and the urinary tract malformations. (This can be sometimes found in Trisomy 18 and 21 but all testing has shown low-risk of those.) Additionally, his abdomen has measured greater than 99th percentile from 20 weeks on.What's the prognosis?Well that's the hard part. We really don't know. It's a rare disease, affecting approximately 1 in 40,000 births. Statistics are difficult to come by, as is a standard treatment plan. The only real statistics I could find show a mortality rate of 50 percent at, or shortly after, birth. With an additional 50 percent of those who survive not making it past 5 years.Ouch, right?The statistics are scary. But we don't know for sure that it is Prune Belly, yet. There are a few other possibilities but with the bladder so prominent this time, our hopes are dwindling. We've really been praying for a miracle. And we will continue to do so. But short of complete healing or a very mild case, we are praying that we have the best possible doctors to provide the best possible care. Treatment is virtually all done on an individual case basis, but the scariest part is that most nephrologists and urologists have never seen a case. So they're just flying by the seat of their pants, taking (possibly somewhat-educated) guesses as what would be best.
So, that is all for the next 4 weeks if all continues as status-quo. The 16th of December will hopefully find us with more (positive!?!) info and perhaps a plan for delivery. Bryan is due to be overseas then, so we're also praying that we won't need to deliver before he gets back.
