Another Day, Another Doctor Appointment

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boston

Yesterday’s visit with my local doctor reminded me of my new habit: to turn away from the bad and just concentrate on the good.

Marshall refused to cooperate for a non-stress test yesterday by moving directly away from the monitors and the nurse said “He’s going to be a spoiled brat.”

And how ok I was with that thought.

 

Tomorrow we meet with the Boston teams.

And in the meantime, I’m thankfully super busy with work.

Yesterday was hard.  And tearful.  I expect more tough days to follow.

The wild boys are spending the week with their dad so the only distraction life offered was work.  And in their temporary absence, it was my job that pulled me through.

I don’t know if I’ve ever lived so deeply in a state of gratitude in all of the 35 years I’ve been on this planet.  

 

 

Gratitude, Laughter, and Leggings

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thankyouleggings

It’s Marshall’s “first” trip to my favorite place on earth.

Where all but a few of my favorite people get together every year for great company, good food, big laughs, and plentiful hugs.

This year is extra special of course.

There’s soooo much to be thankful for – especially laughter.

That infectious laughter  inspired by shared stories sitting around the table after a great feast.

During cleanup, Gram says to me: “I’ve never seen you eat so much, Becky.”

“I know, Gram, but I’m really trying to grow a nine pound turkey by New Years!  Can you imagine ME having a 9 pounder?!!?”

Two Weeks ‘Til Boston

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Marshall surprised me today by cooperating for a-n-o-t-h-e-r ultrasound.

The technician went above and beyond her call of duty today by tolerating my near endless inquisitions and request that she “make a 5 year old boy really happy by giving me some pictures to take home for him.”

The news of the day is his brain, stomach, liver, lungs, bladder, and kidneys are looking fine.  And his heart is pointing in the “normal” direction.

And he weighs an estimated 4 lbs already.

<insert minuscule victory sigh of relief>

And we saw his precious little face tucked perfectly between his hands.  It looked like a cross between “The Cherub Pose” and “The Scream” (depending on perspective.)

I personally got to thank Dr. N, the high risk ob responsible for referring us to Boston.   Without her willingness to help, it would have been even more of a fight.

Which never stops.  It’s the keeping of the mind frame simply cast in being thankful for every kick and moment we’ve spent with Marshall in the past 32 weeks and every moment we get thereafter that seems to be the hardest now as we battle this looming unknown.

I don’t know how we’ll do this but I know I won’t stop trying until I know I’m beat.

“There is no plan.”

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I’m beginning to think that no one knows what’s going on anymore including people who have 12-16 years of education.

After this week’s fetal echo, we’re left with a whole bunch of questions and no answers.

I rubbed his feet and knees while the doc  and nurse hurt (at least) me.  God knows what this is doing to our 3.5 pound baby.

This damned probing has to stop.

Dr. S said: “It’s not HLHS it’s more like Hypoplastic Left Ventricle.  You all have been on my mind for the past four weeks since I saw you.  I waited on sending out the letter…so now you’ll get two…”

During the delayed consult (another emergency in the hospital), Dr. S gave us a diagram with connotations of five other defects/disorders. The first of which is a Right Dominant Unbalanced AV Septal Defect. He mentioned three other patients in his practice with the same condition/s who lived without surgery for 20, almost 30, and 44 years.   He said it was likely the fetus (god forbid Marshall is acknowledged as a person by using his name) may need a shut but not the Norwood.

As he has developed, his unique anatomy worked around the defects and made new connections (to paraphrase).

 “If there are other anomalies he may not survive at all.”

“But I’m asking you, Dr. S, what would you do if this were your child?”

“Go to Boston, get the second opinion.  Let me know how you make out.”

I felt like I stepped off a carousel after that appointment.  I just wanted to throw up.  My head spun.  My belly hurt.  I was so hungry.    And so tired of all of this.

And it was in the car after that appointment that I decided to just check out.  Detach.  Let go.

I researched what I could make sense of.

I couldn’t bear the thoughts in my head so I just slipped into zombie mode.

And lucky for me, the wild boys have a thing for zombies…

I don’t even like plans but all I hear in my mind, like a radio on repeat, is :

“So what is the plan?”
“So what is the plan?”
“So what is the plan?”
“So what is the plan?”
“So what is the plan?”
“There is no plan.  We wait until he is born.”