According to my calculations, this is Marshall’s “First” Christmas.
Especially since a few people have already given him gifts.
And just for the record, the”thumpety thump thump” wasn’t Frosty.
It was Marshall kicking around after a long, long day.
I waited up ’til midnight to be the first to say:
Yesterday’s regular ob appointment turned into a panicky 2 hour long ordeal.
I’m offering my thanks to the incredible staff there – without Dr. K, Nurse T (whom I introduced to my mother as a huge source of support), and ultrasound whiz E in the back, the day would have been worse.
A one hour ultrasound revealed some awesome shots of our little man. My mom was fascinated. We oohed and ahhhed and got to see Marshall’s little arms, legs, belly, head (the head shots creep me out when they reveal the contents of his skull!!), his feet, his toes, his fingers which he uncurled (and may or may not have made the “rock on” hand gesture as he brought his thumb to his mouth), his swallowing and breathing practices, and even the “money shot” (yes that one!) I won’t share that with you but I will show you proof that all of the heartburn I have gave us this:
Then whammo. E plugged her numbers in and there was some cause for alarm. Somehow his head, belly, and leg measurements which had been on track all along were “off.” Perhaps it’s just the difference in the calibration of the different machines as the high risk docs in Syracuse warned. Perhaps it’s something more that will “even out once the baby gets here” as Dr. K mentioned.
And we have this other thing going on: we’ve got l-o-w fluid. Confession: I knew this by the way he moved in the van on the way to my appointment but didn’t want to tell. People ask if I’m ready for this to be over. My response is the same: “No, he can stay in ’til college.”
A brief discussion of what is and what isn’t an amniotic fluid leak with Nurse T after we left the ultrasound only led to more questions. Another confession: I’ve never been in labor. How would I know???
And I knew it was important when Nurse T didn’t take my vitals before she strapped me in for the nonstress test. My panic subsided as my mom watched the printout and all the peaks and dips. Marshall cooperated for a bit and we listened to the staccato whoosh of the placenta and the “three beat” chant of his heart – which, in all of its “specialness,” is familiar music to my ears.
Then he moved away from the monitors but I could still distinguish his faint heartbeat above all the background noise.
Dr K and Nurse T both offered reassurance. Both had that “worried but not imminent” look.
We have to go back Monday for more. And I don’t want to. I’m so tired.
But in the meantime, we’re laying low literally. My plans for the weekend include a couch with old yellow dog as my footwarmer, a laptop, all the water I can drink, and all the food I can squeeze in. I’ve got a baby to fatten up in case he decides to arrive sooner vs. later. According to E’s estimate, he’s weighing 5.6 lbs now.
Now to figure out what’s for dinner without leaving the couch…
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.
And EnFamil is already welcoming him home??!?!!
“… and the feeling that it’s all a lot of oysters, but no pearls”
Twenty three days ’til Marshall is here!
One more fetal echocardiogram.
That’s tomorrow at 2.
One more growth check ultrasound.
That’s Thursday.
Three more regular ob visits (perhaps only two because of the holidays).
It’s so easy to get swept away in this sea of emotions.
I can’t wait to meet him. And yet I’m so scared to.
We had a “regular” ob appointment this morning. I asked for Dr. K’s advice on getting Marshall in a better position for Tuesday’s fetal echocardiogram other than external manipulation. Looks like I’ll be giving spending some time on my hands and knees a try.
And we received the “official” report from Boston, including Dr. F’s findings.
Everything is different in black and white.
Silly question: what’s black and white and red all over?
The report and my eyes.
Dr. S took the time to call me while he was “on vacation” (which, in his words, means he is “just trying to get some work done.”) After giving him a run down of Dr. F’s findings, he thanked me for the lengths I’ve gone to in researching Marshall’s condition. He has a 22 month old in his care who is on his or her death bed and wishes the child’s parents had done the same.
I returned the thanks. He knows more than I ever want to know.
Despite how hard this is, he has made it easier in some ways. He’s surprised by Boston’s unwilling to go to “heroic efforts” for Marshall if the MAPC’s are there (“I thought for sure they’d try to pull them all together but if they won’t they have valid reasons why.”)
Valiant and mercurial, Dr. S apologized for his “optimism” after our last appointment. I assured him there was no need for such apologies and that it actually did us some good. His infectious optimism during that moment offered us hope.
Which brings me to today’s small victory: Dr. S is willing to take another peek at Marshall to help determine the presence or absence of the MAPCs, pulmonary veins, and pulmonary arteries.
Marshall’s little life depends on these findings and other factors far, far out of my hands.
The reality is harsh. And it reduces me to tears every.single.time.
I know I’m in no position to ask for favors but if you have a prayer, good thought, hope, or any strength to spare, please send it to our little miracle.
This site went from 1 view daily to over 600 which means people are “listening.”
And in all of that listening, I hope beyond hope by sharing Marshall’s story, we all can be inspired in some way.
Every. Kindness. Counts.
It’s official: Marshall will be on his way at 10:30 a.m. on January 9, 2014.
After a tearful visit at the vet with my old yellow dog (more not so good news but 14 years together is a great run), I called to let the folks at Brigham Women’s to let them know we’d like to have Marshall there.
Ironically, they’d already booked the c-section for 10:30 a.m.
Our miracle baby will be born on the same day as Dave Mathews, Paulo Nutini, Jimmy Page, Lee Van Cleef, Richard Nixon, Bob Denver, Joan Baez, Simone de Beauvoir, and even Kate Middleton.
Whew.
Just breathe…
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.
