Boston was exhausting.
I lost count after the fourth hour of ultrasounds.
The good news is Marshall has hair. And we watched him blink his eyes.
And it seems our baby, though absolutely beautiful, is basically (in the simplest of terms) a genetic mutant with a very rare, very severe series of heart defects.
I blame myself. I grew a messed up baby.
But he’s just like me: he wouldn’t cooperate for the 2.5 hr fetal echocardiogram and much of the testing.
And he’s difficult (also like me) evoking Harvard’s best to scratch their heads.
We heard more “I don’t know” and “We’ll know once he gets here” than any of us would care to hear. My instincts indicate Marshall’s arrival could be sooner than later. Yesterday revealed “normal low” amniotic fluid and my body is still dropping “trace keytones.”
But enough about me. This is about Marshall.
Yesterday’s cardiologist (Dr. F) agreed a lot with the “hometown” cardiologist (Dr. S) and disagreed in some areas.
Here’s a diagram of what we’ve got (and an accidental half shot of Dr. F):
Marshall has a small unbalanced RV dominant AV septal defect.
Marshall has atresia of one of his great arteries (at 20 weeks they thought it was the aorta, now they “think” it’s the pulmonary vessel).
Marshall’s condition is “likely heterotaxy.”
And it appears his “inferior vena cava is interrupted with azygous.”
And no one can find his pulmonary veins.
This is where the cardiologists differ: Dr. F thinks Marshall likely has a patent ductus arteriosus and Dr. S thinks he has multiple aortopulmonary collateral arteries.
Here’s the really not great at all news:
Dr. F said there’s nothing they can do if Marshall has the multiple aortopulmonary collateral arteries. They can monitor and give meds but that’s it.
But for the small victory news:
Dr. F agreed with Dr. S that Marshall will likely only need a shunt or stent (a 2-3 week hospital stay) but could need the Norwood depending on what they find when he’s here (a 6-8 week stay).
Then round two: the Glenn at 4-8 months (a 2-4 week stay).
And the Fontan at age 2 (a 2-3 week stay).
I asked Dr. F what he’d do if it were his son. He fumbled a bit and reached for the three roads we could have taken back at 20 weeks.
I also asked if the docs would stop at a parent’s request. He said once the momentum gets going, docs don’t “do anything half-hearted.”
My deadpan delivery of “Was that pun intended?” hung him up a bit. Yes, I’m a challenge too. Just as I tell the wild boys, I wanted to tell Dr. F: “Choose your words.”
Then he went on to say docs are hesitant to not just go full steam ahead and it’s typically the doctors who tell the parents it’s time to stop.
I unfortunately know myself well enough to know if they push Marshall too far, it’ll be a nasty, nasty fight.
All of this hinges on many, many things. One is how he does when he’s born. And IF we can get him to eat. And IF we can get him to grow since he could have lung/bowel/spleen/GI issues because of the heterotaxy.
So all we really learned from this trip is the looming, vast unknown embedded in every “I don’t know” is truly all we’ve got. And since I had a heart mom tell me, based on her family’s experiences with her 20 year old son’s heart condition,”if Marshall needs any surgery at all, it needs to be done in Boston,” I can do nothing but trust her authority on the matter. Though his dad and I don’t really agree on where to have him. If we go to Boston, he’ll be here on January 9.
And in the meantime I’ve got to pull off a few super-heroic feats. And find a way to help make it easier for other families to get through this process. My raging urge to find a way to help others as I just don’t know how to navigate this one in terms of logistics, financials, and the emotions is something I just can’t ignore.
When we finally arrived home late last night, I sat on the floor, buried my head in my old yellow dog, and cried from a place I didn’t know I had. All the while trying not to hurt her since the cancer she’s not fighting so well any more seems to have ravaged her body to the point that touch hurts. We go to the vet Monday.
Life’s going to get much, much crazier before it settles down.
All I have to do is hold on…right?
themiracleofmarshall 
Grandma loves you Marshall!!! Be strong little man, be strong.
hold on AND let go…
accept what cannot be changed; change what you can; pray for the wisdom to know the difference
Beck, you’re not alone. Our road together has often felt tenuous, but PLEASE know AT LEAST because I’m a mom too, that my prayers are with you and I AM holding your hand. If you need a hug, I would even do it in public….. 🙂
I know it’s not this simple, but I wish you could cherish that he is safe and warm right now, no pain or struggles, you’re giving every single thing he needs. Read to him, sing to him, rub him and cuddle him. I would wish for you to find that in at least a few moments.
Thinking of you often.
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