It's Going to be a Good Day!

How do I know? Well, we are starting with sunshine for the first time since Monday.  And a pretty sunrise to boot! I'll take it!

Just a reminder that God is always good and beautiful.  

On the Judah front, we finally have no blood in Judah's catheter line! It was the most beautiful thing to see this morning.  Even more beautiful than the sunrise.  

Urology came in already today. They confirmed that the VCUG showed no Posterior Urethral Valve.  They also said the findings were consistent with Prune Belly. 

While the VCUG only showed reflux on one side,  the right, classified as Grade 3, I believe, it is more common for it to be bilateral. They plan to perform a MAG3 renal function test to better identify kidney function, reflux, and any possibly obstructions, but need to wait until he's a month or so old. 

Here are some images stolen from the internet that show what the reflux looks like and to what degree he has. The dilation of  his ureters has been classified as severe on both sides,  but may be caused by the weakened muscles rather than the severity of the reflux.

So where do we stand overall?

His Creatinine level was .3 this morning,  down from .59 yesterday. This may be where he plateaus and that would be fine as it is within normal limits for him.  If it does plateau, tomorrow his catheter could probably come out and a repeat ultrasound could be done to see how the urinary tract looks now that he's maintaining it without the help of my body. 

We will definitely be here through the weekend,  even if things look good, to monitor kidney function. 

Long term outlook with Prune Belly- still a lot of unknowns.  What we do know is that he likely has a mild to moderate case,  it doesn't appear to be severe.  He's been breathing room air all along with no help, huge win.  Once we can determine if he can void urine on his own,  we can move in the right direction. If he can't,  we will revisit the options to enable that so we can go home. 

Our main concerns will focus around preventing infections in the urinary tract.  He will be on antibiotic prophylaxis long term.  He will be at a greater risk of complications/ death of respiratory infections. Renal failure and pulmonary infections are the leading causes of death. 

We have not completely been diagnosed with Prune Belly.  We have also not completely ruled out MMIHS, nor more complications of Prune belly or MMIHS such as the possibility of malrotation of the bowels or any other potential GI tract abnormalities. He is expected to have upper and lower barium studies today to check the GI tract more in depth.  

Truth be told,  Prune Belly Syndrome and MMIHS have many overlapping characteristics. The fact that he is passing meconium and not vomiting is promising.  Both disorders vary in severity on a spectrum, and it can be difficult something to determine which is the best fit.  Also, some symptoms develop slowly and can take a while to diagnose. 

The awesome thing is, they've at least seen multiple cases of Prune Belly here at Children's National and should have a better than average plan/ some expectations. We are confident we will get the best diagnosis possible at this time and know a good game plan moving forward. 

Specific prayer needs? 

That he can start nursing so we can get him off the IV nutrition. And that he can, indeed, urinate on his own! Those will be the main holdups in going home.  You can keep praying for a miracle to heal him as well! 

I think I shall finally go order a car seat.  It looks like this sweet child is going to be coming home with us!