Updated Max News - Prayers and Good Vibes Needed

This is from our youngest and the journey they going through with sweet baby Max that is due end of December.  

20 weeks today - halfway through…

The most recent pictures of our Max

We debated sharing, but have realized that we need all the prayers and support possible.

The good news first: this last week at the routine 20 week anatomy scan ultrasound, they told us that Max is a big boy in the 94th percentile for size with all limbs accounted for. That’s great news.

Then the bad news….

We discovered that he has some major issues with his heart.

We have initial diagnoses but won’t know for sure until we see a pediatric cardiologist next week.

Things we know:

We’re looking at a good chance of him having a serious genetic condition called tuberous sclerosis or TS/TSC. Evidence of rhabdomyomas (benign tumors) in his heart are present.

He has mitral valve atresia which will almost definitely need multiple staged surgeries to treat.

I was reassured that none of this has anything to do with my age or anything I did or didn’t do. It is a roll of the dice.

They want me to go as long as possible till delivering because the bigger and stronger he is, the better his heart will perform on its own once they cut the cord. And I will be delivering at the pediatric hospital in Oklahoma City at OU. My due date is the week after New Years.

As you may imagine we were shocked, deeply saddened, and are now facing the grief of what we hoped would be a “normal”, healthy pregnancy and baby.

He will most likely survive, at least that is what we know now. Things could change for better or worse with more information. Life could, and will at times, be a very challenging one for him and us.

But he is already so loved and we are going to fight with our every last fiber of being to carry him, quite literally, to the finish line.

And we need your prayers. Please put us on prayer lists, light candles, start novenas, anything you can do to storm heaven. We are praying that it’s not as serious as it seems.

How are we doing?

We are okay. Most of the time I think we’re in disbelief. Nothing that some chuckling at silly internet cat videos can’t treat. At other times I am frozen and can’t stop the tears.

Next appointment is Wednesday. Until then...

St. Maximilian Kolbe, ora pro nobis!