I’ve accepted it: I can’t move.  Baby stepping is an understatement.  Yesterday’s fetal echocardiogram took every bit of energy I had completely out of me.  And caused my body back to hurt in ways I didn’t know were possible.   To the point that two men had to pull me up from the table.  And I still ache everywhere today.

I hadn’t realized at the time just how tightly I had clenched my entire everything for the length of the 2.5 hour procedure.

And I also held my breath frequently.

And of course grit my teeth.  Hard.

And betrayed myself a bit when I accidentally let a few hot tears slide down my cheek.  I tried soooo hard to not let that happen.  But it seems that all of my dedicated time spent on my hands and knees to get Marshall to turn was effective.  He was “perfectly” positioned for the sonographer (whom I’d accidentally mistaken for a nurse…shame on me) and Dr. S.

It’s a tough thing when a sonographer looks at your baby’s special heart and poses: “Now I’m just asking but has anyone at all mentioned a transplant?”

“No.  And aren’t they only good for five years?”  My own heart sank to depths I hope no one ever reaches.  Nobody donates newborn baby hearts, lady…and even if they did, it likely wouldn’t work.

“Well, sometimes longer.  There’s medicines, you know?”  When she was through, she literally chased down Dr. S.

And as Dr. S was trying to get a couple of important views, I was in absolute agony.

“Am I hurting you?”

“Not really but kind of.  I’ll be fine.  Do what you have to do.  Just please don’t push him out.”

At least I wept silently during the worst of the procedure.  My hope is the more the docs hurt me now, perhaps the less they will hurt Marshall later.  It’s what mamas do.  I’d rather be hurt than let anything or anyone hurt any of my four wild boys.

The good news is our little miracle is practicing his breathing.  It’s rapid (my instincts say waaay too rapid) but he’s doing it.  And I once again watched him blink.  He has these huge eyes (what the family refers to as “Sepello Eyes”) and though it’s kind of unreal, it’s almost like he’s winking at me.  It happens more often than not – too often to be mere coincidence.

Dr. S revoked his findings during the last fetal echocardiogram he performed.  Dr. S admitted he “thinks he was wrong” and that “it wasn’t collateral arteries.”

<insert teeny tiny itty bitty shimmer glimmer of hope>

Dr. S found pulmonary veins and pulmonary arteries.

Now it’s all dependent on Marshall.  And how big the pulmonary arteries are.

A conversation after the echo followed during which Dr. S shared his diagnosis (“Yes it’s heterotaxy”)  and likely outcomes (“The odds are 50/50.  But it’s’ good news that we found his pulmonary veins and arteries.”)

We discussed surgery factors and options.  “Boston is the best” per Dr. S “it’s where you want to go.  But if they say it’s inoperable, it’s inoperable.”

“Marshall has to get through the traumatic [for every baby not just special ones] process of birth.”

And he has to meet specific criteria (regarding his anatomical features, function, and his overall body weight).  And his other organs have to be ok (often there are other organ and GI issues associated with the Heterotaxy).  He has to be able to feed.

I blew Dr. S away again with what I know…his comment was “Wow, you’ve done your research.”  As the conversation progressed, I swallowed the all too familiar hard lump of reality in my throat.   Dr. S wouldn’t answer my “is polysplenia or asplenia is better or worse?”

He said to hope for “a normal spleen” because “each has a set of its own problems.”   If you’re reading this, please send strong, powerful thoughts/prayers/whatever you believe for “a normal spleen.” And for the sake of hope, I will refrain from sharing what I know it means if his spleen is abnormal as well as how slim the likelihood of a normal spleen is.

Marshall’s odds jumped a bit with yesterday’s findings.   My research  following our 36 hour consult to Boston & back led me to grim, sad numbers: without the pulmonary arteries and veins Marshall’s chances of survival were 15/85.  From my perspective, 50/50 is a win.  He’s got a chance…plus I’ve worked with less in other areas of my past life (which were also somewhat life threatening given the circumstances) and we’re all still here…

Saying goodbye to Dr. S and the sonographer was tough.  I don’t know if we’ll see them again and the thought of not seeing them is too unbearable for words.

We all shook hands and did the obligatory happy holidays thing in the hall after our appointment.  I thanked them both profusely.

Just before I walked away, I looked at them both and said “I hope to see you again.”

Just after the appointment, life handed Michael and I an opportunity to be really thankful for what we’ve got. While walking up University in search of some much needed food, a man approached us as we were stepping up to a door to a restaurant.  He had a ginger beard, a (not nearly warm enough for the harsh winter weather) Buffalo Bills coat, and matching black hat and scarf.  

He held a newspaper flyer in his hand.  His eyes bore into my “I feel as raw as tenderized steak” state.   In a very friendly voice and blinking away tears from his blue eyes, he explained the circumstances he’s living in: staying at a homeless shelter, 1.5 years clean, cold, hungry, in need.

My god I relate.

I fought tears as I listened to him share his story.  And my mind kept screaming “You have to help him.  You can’t spare him the only $20 you have.  MY GOD I WISH I HAD A $10.”

My husband blew me away.  Michael reached into his pocket and handed the man money thank goodness.

And thank you universe for reminding me/us it could always be worse.

It was a messy return home.  The wild boys were living up to their name and completely wound up from some quality time with Grandma P until we arrived home.  I try so hard to keep it together for their sake and keep Marshall’s “stuff” out of their lives.  But last night I just failed (two fails in one day!)  I sat down on the couch to talk to my mom about quilts and collapsed.  I buried myself in her arms and sobbed like a child.  We didn’t say anything.  And we didn’t have to.

There was just no stopping the flood.

“Is she crying?”  One of the wild ones asked.  The oldest wild boy rushed over to us and hugged me.  And obliged to Grandma’s request for tissues.

Within 5 minutes some or all three wild ones were flailing a bean bag around.  A few ornaments from the tree crashed to the ground.  I creaked in agony to my feet, wiped my face, blew my nose, and Mom mode set in.

Funny how there’s so little time that a girl can’t even fall apart.

Ha.

It’s in our programming to withstand.  And endure.

And hope.

It’s all we’ve got left.