A Christmas Miracle?!

So the meeting with the NICU doc and head of surgery (I think that is who he was) at Children's was full of very promising news! 

They saw no evidence of any GI tract abnormalities on the MRI! 

(Side note- MRIs are awful. I am sorry to anyone who has to go through that regularly. Even with my head out, I felt panicky. And then knowing you can't move for an hour? Oh my. And who knew they were crazy loud?! They did give me headphones with some beach sounds - water sounds and a pregnant lady...seemed silly but thankfully I didn't have to make them stop to use the bathroom. The worst besides the claustrophobia was actually the combo of having to wear a mask and having a nice, warm blanket on me. I was miserably hot and sweating. God is always good though, and between desperate prayers, the rosary, and the sleep deprivation as of late, I was actually able to doze for much of it!)

So, back to the results. No GI tract abnormalities gives us true hope that it isn't MMIHS! 

It gets even better. They claim that there is evidence of a thickened bladder wall. Which we did see on one ultrasound before, maybe around 24 weeks. And when I read through the report, it says they saw a normal abdominal wall. So those would both be unlikely with MMIHS or Prune Belly. 

They said they are "97%" confident that Judah has Posterior Urethral Valve (PUV). 

This is truly the best we can hope for with the current state of his urinary tract! It could be as minor as a simple surgery to remove a flap of tissue and no lasting effects! That would be assuming that the kidneys, ureters, and bladder have not sustained too much damage with the extra fluid to work properly. (If he has damage to any of those, the treatment will be ongoing and adapt to what we see.)

So the current plan is super exciting. As long as they are able to get a catheter in and keep the bladder drained, he can stay at Walter Reed with me until I am discharged. Then he will be transferred to Children's where they will use dye to check for PUV. (I actually think that they will do this at Walter Reed, but we will see.) 

If there is tissue causing a blockage, they plan to do surgery within 24 hours. Hopefully, it will be super simple with a laser. They expect the worst of it to be the anesthesia recovery. (And they estimated his current weight to be 10 pounds 15 ounces. They are pleased because the bigger he is, the better he should tolerate the anesthesia. I'm not convinced he's that big. I mean, I'm miserable but it doesn't seem any worse than any of the other kids.) After that is complete, if things start draining normally, we stay for a week or so monitoring his kidney function and then we should be able to come home!! 

Right now, we are expecting an induction on the 4th of January. So my goal is home by the 18. Just my personal hope, I even gave a few extra days of wiggle room.  Keeping it positive here!

So what if it isn't PUV? Then it is likely PBS or MMIHS. We actually should be able to tell if it is PBS right away, as generally the abdomen looks like a prune. MMIHS will be more of a concern if he can't eat or process food properly. 

What about his feet? Well, they said they couldn't confirm the bilateral club foot because he was squished too tightly in there. It is highly unlikely they went away, as we have had confirmation on every ultrasound since 20 weeks. We expect treatment will have to wait until after we get through the worst of the rest of this. They may not start treatment until we are in MI, since we will be moving when he is 8 weeks old. Frustrating, but so minor compared to the rest!

So the only thing, other than the feet, that doesn't match up with the PUV is the extra fluid I have. Polyhydramnios is common with MMIHS but PUV and PBS both normally have too little fluid, Oligohydramnios. When I mentioned that, they said they saw that in the doc notes but the fluid level was normal this time (AFI of 16). (I've been watching carbs and sugar because many people have had luck reducing fluid by doing so and have gone from can't eat, can't breathe, can't sleep to none of those issues. I knew it had gone down and I'm thrilled!) So...no comment, kinda like the feet. 

Bottom line? We are very cautiously optimistic. Both PBS and MMIHS are often diagnosed as Posterior Urethral Valve initially, mostly because it is far more common. Oftentimes it can take months to get the right diagnosis, despite the child having many difficulties. We really want the right diagnosis from the start, so he has the best treatment possible. Additionally, there is a chance that things could be dire, even with PUV, if his kidneys can't function properly- or at all. We are, again, optimistic because they see healthy renal tissue around both kidneys and with all the fluid we know at least one kidney is doing something! But we can't know how things will work when his body has to do all the work itself. 

SO PLEASE KEEP PRAYING!

Well, the countdown draws close to the end. We are in the single digits! Here's to a peaceful, productive week in which we can get ready to add another little guy to our life! 

Don't feel obligated to look through all the pictures, I'm mostly posting them for easy reference for myself and for the kids as they get older. But they are kinda neat looking, I've never seen fetal MRI images before.

Cute little squish, you can see his little toes in this shot. And clearly his eyes! (A little creepy, I know.) The big blob in his abdomen is his bladder. The white lines above are probably his ureters.

 I love his little fat rolls above his knee here. 

The big blob is his bladder. I don't know if all other the other white spots are his ureters, but the backwards c- shaped one looks like most of the other images I have seen. Ureters should be like little straws that aren't even visible on scans in a healthy situation. 

Balloon looking thing on the right is the bladder.

Waving hello! Forgot to mention that they did a lot of brain imaging and the report said all looked good.

I can't figure out what he looks like here. Some kind of stuffed animal or cartoon I have seen. 

Profile shot. Wonder if his lips are actually that big or if it is like Selah's nose that had us all worried for nothing on her ultrasounds!

View from the back. You can see his abdomen is pretty distended looking in this shot.