How Down Syndrome Came to Grace My Life: 12 Hours of Reckoning

Part II:  The saga continues! (In case you missed it, read Part I of this series “A Second Child and Then Some” here!)

After all the terrible diagnoses that feel like but haven’t yet been dismissed as misses, I am completely burned out with the medical community… save a few who, it feels like to me, are still on my side.  On my babies’ sides.  There are still a few of us optimists holding out in the face of potential tragedy.  POTENTIAL tragedy.  They don’t really know.  And, some of us are still hoping for the best despite signs (not proof) that there may be trouble.  It feels like most medical personnel we encounter are pessimistic.  As if this whole pregnancy was a done deal before I even got started.  And even more so once we got started.  It feels like a bunch of medical interventionists flexing their muscles, testing their knowledge, practicing on me and my babies.  “OK, enough with this one.  Let’s go ahead and terminate so we can move on to the next.”  Only we’re not guinea pigs and this IS real life.  OUR real lives!  Seems forever ago since I refused all further medical testing except for the weekly sonograms to track the size of the babies’ ventricles.  And that only by the one friendly sonographer at our OB/GYN’s office.  Too many of the others in the peri-natal medical community seem pitted against us.

It’s late.  Way past 9:00 pm and I’m on my way to the Emergency Room – alone — on Betsy’s orders (our midwife).  I’m reviewing in my head all the horrible diagnoses I’ve been given over the past 7 months.  All the diagnoses I researched on the internet – one worse than the next.  But in my now web-educated mind, none of these seem to fit.  I think about how the twin-thing didn’t fit when I first tried it on and whether this is just me not accepting the reality of the situation again.  Perhaps one of these diagnoses is something I’ll need to accept in time.  But I don’t feel like that’s what this is.  It all just feels completely wrong.  I mean, it feels to me like they’re wrong… but I don’t feel qualified to think that.  The twin denial thing was strictly emotional.  This?  I’ve done my homework and, with the glimmer of hope our friendly sonographer has given me, I’ve boldly discredited and thrown away each diagnosis they’ve given me. We all agree that some of the signs and symptoms don’t fit so I choose to heartily toss each in the trash. “Otherwise” they say,” the babies are growing. They’re healthy.”  Are they kidding?  Otherwise

I have no idea that I’m on my way to finally discovering a real-life diagnosis.  I have no concept, honestly, that I won’t be home in an hour.

When the ER security guard sees me, he ushers me right through to maternity, bypassing the routine sign-ins.  I explain that I’m not here to deliver but when you’re carrying twins everyone thinks you’re about to drop ‘em any minute and gets out of your way.  I’m given a room and a gown and find myself reminiscing about a time, 7 short months ago, my gown cinched under a now significantly expanded butt, my legs dangling from the table’s edge.  This time, I close my eyes and pray that my babies are fine.  I’m not reading any more of the darned posters.  It’s just me and my babies against the world.  The nurse takes my blood pressure.  Normal! I’m feeling oddly calm despite all the machines being wheeled in and diodes being attached.  She stands, hands on hips, staring. She’s calibrating the machine, I think.  Calibrating. Calibrating.  Calibrating.  No one speaks.  “You’re how many weeks?”  32 1/2!  “Do you feel that?”  I feel absolutely nothing!  “You’re contracting every 2 minutes!  You don’t feel that?”  WHAT?  No!  That familiar feeling of disbelief envelopes me once again.  This is NOT happening!  I’ve got 8 weeks to go!  The good news, she says, is that the babies are fine.  I guess that’s a relative statement since these nurses have no idea what we have been through the last 7 months. We listen to their heart beats. No distress.  Check their position.  They’re heads-up now.  Breach – having flip-flopped perhaps as a function of their mama’s roller coaster emotions.  They’ll give me a shot of meds to stop the contractions; hold me here until the contractions subside.  A couple of hours pass and the contractions have slowed but have not stopped.  Still, I’m not worried.  I’m reassured that I’ll be able to go home soon.  They’re going to do that test that measures some maternal protein or hormone level and shows whether I’m likely to have these babies in the next two weeks based on the presence of a specific hormone that indicates delivery is imminent.  I’m sure that’ll be negative because I just had that test yesterday in the OB/GYN’s office and it was… Negative, I mean.  I’m left alone once again with my thoughts. In the silence of that room, I’m still confident that I’m going home to my Old Soul tonight when the nurse returns and announces matter-of-factly, “the results were positive!” WHAT?  While I’m still feeling utterly surprised by the news, the nurse says with believable confidence that they’ll prep a room and watch us overnight until the contractions subside.  My calm returns. 

No sooner does the door close than I feel that familiar gush that every soon-to-be-a-mother knows too well.  My water’s broken.  My mind is shocked into a blank.  I’m not scared, worried or stressed.  I’ve slipped calmly into delivery mode.  I know the drill.  Once your water breaks, you’re having a baby… or 2!  There’s no drug to make that go away!  I press the call button and calmly say, “My water just broke.”  A long pregnant pause (pun intended) followed, finally, by an incredulous, “WHAT?”  It’s their turn to be shocked.  I actually laugh and repeat, “My water just broke.”  She’s at the door before I realize I’m not talking to her on the intercom anymore.  “Are you sure?”  Ummmm, don’t you love that question?  When one’s water breaks, especially when it does so with a whoosh, you’re dead sure!  “Yup! I’m sure!” OK, she says, “Looks like you’re having babies!”  “OK,” I say, “I’m gonna need a phone.”

It’s nearly the bewitching hour and the Old Soul is asleep when Grandma relieves the Sarge so he can be by my side.  I’m transferred to a holding room and put on monitors to make sure the babies are not in distress.  There’s enough time for only one shot of steroids to help with the rapid development of the baby’s lungs before delivery.  That’s the biggest worry, I’m told, in preemies.  Hmmm, if only!  The meds they gave me to stop early labor have officially failed.  The doctor is scheduled to deliver us in the morning… just several hours away now. It reminds me of the Lords’ Prayer… “Deliver us, Lord, from every evil…”  I’m praying, Deliver us, Lord, from the evils of all these diagnoses!

It should be a harrowing day ahead but I’m not feeling it.  I am filled with an overwhelming sense of peace about the impending birth of my babies nearly 8 weeks early. I am oddly unconcerned about the fact that we’re 2 months ahead of schedule.  Perhaps because prematurity seems mild compared to all the other terrible things they’ve predicted we might encounter at their birth.  But I don’t think that’s it either.  It just feels like the babies are done with this pregnancy and so am I.  I never even consider the dangers of prematurity.  It’s just all OK.  I’m scheduled for the first c-section of the day.  Under normal circumstances — though nothing about this pregnancy has been normal – every one of us should have been nervous given all the negative possibilities we’re preparing for.  I can see the medical professionals gearing up in their usual we’re-delivering-twins-2-months-early kind of way.  They’re doing their jobs. Anticipating what might go wrong upon delivery.  It’s just something they do for every birth!  It feels like all the diagnoses that were bumped about the last 7 months have been forgotten… or maybe not communicated.  We’re just delivering babies and whatever happens next, happens!  We’ll deal with it when and if it does.  It’s a plan I’m comfortable with.

We’re bumped back as a non-emergency C-section by two mothers with “real” emergencies. At least THAT’S comforting.  It’s always good not to be the worst case scenario.  Our turn is delayed from 8:15 am to 9:00 am and then to 9:45 am.  We’re told we’re definitely next… 10:00 am.  The anesthesiologist comes in to brief me on the procedure.  With a smile he says the Epidural shot goes into the lower spine.  I’ll feel a pinch then a heavy weight on my chest followed by a floating sensation.  My stomach flips.  THIS I’m irrationally nervous about.  When I was pregnant with the Old Soul, I read one woman’s account of being paralyzed by the epidural needle and it stayed with me (hence the natural childbirth).  I won’t be able to take care of my babies if I’m paralyzed!  I can take care of them come what may… but I not if I can’t walk!  A state of low-grade panic starts to quietly overtake me.  When the good doc takes his leave I confess my fear to the Sarge.  He laughs!  Thinks I’m joking.  But when I keep talking, irrationally, about being paralyzed he accepts that I’m afraid.  It’s disconcerting to him since I’ve never been afraid of anything.  And, I know, it’s not like he can do anything about it.  One of those fears I’m going to just have to get over… and soon!

The anesthesiologist comes back to let us know it’s time and I confess my fears.  He assures me he’ll be right there and YES I will feel like I’m suffocating when the imaginary weight presses down on my chest.  But he promises it’ll pass in 10 seconds that’ll feel like an eternity and he’ll be there “walking” me through it (Oy, the walking thing again). I don’t know him from a hole in the wall but his words make me feel slightly better.  And off we go!  The trigger was pulled when the water broke.  I no longer have a choice!

Our OB/GYN is tiny so they bring in a milk crate for her to stand on.  Not so high tech afterall!  I’m introduced to a specialist brought in to assist. Whatever!  My savior, the anesthesiologist is at my head.  Sitting up, he inserts the needle.  “Don’t move now!”  It’s barely a pinch and a squeeze.  As I lay back down I’m strapped down, my arms outstretched to the sides.  “Here it comes” he says just as the pressure on my chest increases rapidly and I can’t breathe.  He’s counting 1. 2. 3. 4. 5. 6. He’s looking straight into my eyes and telling me it’s almost over.  7. 8. 9. 10.  Like magic the weight lifts and I’m floating. 

Sorry for the cliff-hanger but I’m a terribly long-winded story-teller especially when it comes to this particular story… One that I personally believe deserves to be dragged out.


About Maggie

I'm a stay-at-home mother of 3 children including a 15-year-old daughter, the Old Soul, and 11-year-old identical twin boys who've been blessed with an extra 21st chromosome (aka: Down Syndrome). I happily spend my time doing all that I can do -- breaking the proverbial box wide open -- to foster my children's development and then sharing what I learn with you through this blog.
This entry was posted in Birth Story, Down syndrome, Down Syndrome Advocacy, Down syndrome birth, parenting, stress, Uncategorized. Bookmark the permalink.

4 Responses to How Down Syndrome Came to Grace My Life: 12 Hours of Reckoning

  1. maggie says:

    i’m still waiting for the 3rd installment!

  2. Pingback: Down Syndrome is Now Just Our Backstory | Take A Walk on the Happy Side

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