Trust Me

At my 16 week OB appointment on Tuesday, January 5, the doctor wanted to do an ultrasound to check cervical length. This is something they've planned to monitor since the beginning. The ultrasound was taking longer than expected, so I was starting to worry. She asked me when my last ultrasound was (4 weeks prior), and if they had mentioned anything about the baby's anatomy. I told her no, it was with high risk, and they said everything looked perfect. She turned the ultrasound machine around and showed me what she was seeing.

There was a large black circle in the baby's abdomen, and she said that it looked like it was the bladder. It definitely should not have been that large. She printed more images from the ultrasound, and sent them over to high risk, and called to see if they'd want to see me sooner than my next scheduled appointment, which was that Thursday. They said Thursday was fine, and just keep that appointment.

She explained to me what some of the issues could be, that it was likely a urinary tract blockage, and that could cause serious problems, but she wasn't qualified to make a diagnosis, so I'd need to wait until I saw high risk on Thursday.

At my appointment on Thursday, they did an ultrasound to get measurements of the baby, of the amniotic fluid, and cervical length. The baby is measuring beautifully - everything was the size it should have been. Except the bladder. They did find that it's a boy! His head was 3cm, and his bladder was measuring at 2.7cm. His right kidney was enlarged also, and the left looked like it was beginning to show some damage as well.

They diagnosed him with Posterior Urethral Valves, which is basically an extra flap of tissue in the urethra that prevents him from being able to empty his bladder. This is causing the urine to back up into the kidneys, causing damage. My amniotic fluid level was still very low.

The next step was draining the fluid from the bladder via amniocentesis. The needle is huge, and it freaking hurt, but not nearly as bad as I was expecting. The dr was expecting to get maybe 1 1/2 syringes (20cc each), but ended up with 2 1/4 - about 45cc of fluid. It broke my heart for the poor baby... I can't even imagine how much pain he had to have been in. They sent the fluid out to a lab for genetic screening.

Today (Monday) I go in to have his bladder drained again. We should have some of the results for the genetic testing back today, so hopefully we'll know if it's a genetic issue, which it occasionally is with bladder obstruction.

I'll go back again Wednesday to have his bladder drained again, and at that point, they'll use the fluid to run some lab tests to check kidney function. If his kidneys are still working, from there, we'll discuss in more detail the surgical options we have.

One option is having the dr here in Pensacola place what they call a pigtail catheter (it's curled on each end) between the bladder and the amniotic sac through the abdomen. This will help to drain the fluid from the bladder, also adding more amniotic fluid. The issue with this is that it's very small, so it can easily become clogged by skin cells floating around in the amniotic fluid. Because it's such a small opening, the fluid doesn't drain quickly enough to relieve the pressure on the kidneys. And because it sticks out, babies will often pull it out.

A second option is where they'll basically open the abdomen to the bladder via an incision. This will be repaired after he's born. This procedure can be performed by several doctors throughout the US. It's much more invasive, but more common.

The third surgical option, the one my dr is leaning towards, is sending me to a specialist in Denver. He has pioneered a procedure where a stent is placed between the bladder and the amniotic fluid through the abdomen. It's less invasive than the incision, a larger opening than the catheter, and more successful. The ONLY place the surgery is done is in Denver, so we would have to travel to have it done.

The doctor did say that in some cases, draining the bladder initially reduced the pressure in the urethra enough that the baby was able to pass the urine, and the problem basically resolved itself, and kidney damage is very minimal. This is the absolute best case scenario. We can only hope for this.

There are several other scenarios... none good.

We can go in today, or Wednesday, or really, any day, and the baby will have already passed, due to pressure, kidney issues, lack of amniotic fluid, etc...
We can go in and find that there's a genetic issue, or that the kidneys aren't functioning enough to warrant having the surgery done, and we let him pass naturally.
We can have the surgery done, and the amniotic fluid is still too low, and his lungs don't develop enough to even use a respirator after he's born, and he passes due to respiratory issues.
We have the surgery done. He is born able to breathe, but has severe kidney damage and requires dialysis and/or kidney transplant right away.
The next best scenario, the one I'm really hoping for... is that we have the surgery done, and the rest of the pregnancy goes without many issues. He is born, able to breathe, with no other major issues. they do whatever surgery is necessary to remove/repair the stent, remove the valve that's causing the issues, and he doesn't have to suffer on dialysis for the rest of his life.

We've been praying constantly for the past several days. Praying that his body heals itself, mostly, but I've also been praying that I can handle whatever scenario we're faced with. That we can make it through whatever trial we're given. That I can be ok with whatever ending we get.

The most prevalent thought that's gone through my mind since we first found out has been "Trust Me." I'm trying. I really am.