Sunday, April 3, 2011

April 6th

This week will be the first time I’ve worked on an April 4th, 5th, or 6th in seven years.  I couldn’t justify staying home after the girl’s RSV hospital stay, her eye surgery next week, and our recent extended vacation.  Plus, I have a training class the first week of May, and my sister’s wedding later that month.  I’d like to stay employed, though I can’t say I’ll be super productive the next couple days.

April 4, 2004 was the last time I felt my son Brennan kicking.
On April 5th we discovered we'd lost him.
He was delivered in the early morning hours of April 6th.

I wrote a version of this a while back on Band Back Together, never intending to share it with a soul (not with anyone I knew at least).  Our story usually makes people squirmy - it's not really cocktail party conversation, but it is MY story so I will succumb to the temptation of wet concrete, or a penknife and tree trunk and post it here, now that I have my very own (microscopic) corner of the internet.  I strongly suggest the family NOT read it.  Lots of swearing, amongst other reasons.  General blogging rules also suggest this is way too long for one post.  Too bad.  No one else has to read it either.  Here’s a cute picture of a dog instead as a thanks for stopping by, if you want mosey along.  Story is after the jump.
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Seven odd years ago, I was not quite 32 years old and over 37 weeks pregnant.  First time.  Perfectly healthy.  No trouble conceiving, just late to get married, had to pay off some debt, and wanted to buy a house first 'cause that seemed the responsible thing to do.   My Mom & her beau were down to visit on Sunday.  We went to see a movie - Steven Segal of all things.  The movie was loud and Baby was kicking HARD.  I assumed it was because of the noise.  We then spent an hour picking out a ridiculously expensive frame for an otherwise cheap print that is still hanging in our kitchen.  We took bets over dinner to see when the baby would come.  We had Chinese.  We knew it was a boy & we had a name picked out.

Mom & beau fly home that night.  I walk the dog Monday morning - Baby always slept during our walks.  Shower, & off to the OB before work.  Previously scheduled appointment.  Close enough to our due date for weekly appointments.  Nurse can't find the heartbeat with the Doppler.  Time slows and I am no longer cheerful - the nurse was always nice but I suddenly notice her bad skin and frizzy hair.  But she's self-contained, professional.  She says we'll go into this other room over here and let the doctor look with the ultrasound.  We switch rooms.  The doctor sees me in passing and looks quizzical.  I see his face and that's the word - quizzical.  Why the fuck does my patient have tears running down her checks?  There are tears but I am not crying yet.  Still functioning.  Still anticipating relief - boy, Baby, did you give mommy a scare!  We are soon in the - I think it's the storage room? - there's stuff stacked up everywhere.  He looks.  He puts his hand on mine.  On my belly.  I'm so sorry

Call my husband from the OB's office. Which is cluttered with FEET of paperwork.  I remember wondering why he didn't have a secretary.  Remember thinking that if my husband is anything less than exemplary, if he blames me, I will leave him.  After Matt arrives, we go back to the ultrasound room (is my memory right here? WTF?).  The OB notes reduced amniotic fluid - had I noticed any leaking?  Mark one.  No.  What did I miss?  I mention how hard he'd been kicking the night before. Probably death throes.  Mark two. Death throes.  I've only had this happen one other time but the mother thought something was wrong and came in.  But it was her third pregnancy & she could tell the difference.  Mark three.  I could not tell the difference.  He kindly does not point out that I am such an asswipe I was eating popcorn while my baby was violently trying not to die.

He provides us his schedule for the, er, delivery. He had some time off & couldn't do it on this or this day.  So sorry to disturb your plans but I seem to be carrying a 37 week old corpse in my belly - do you mind?  Went home.  Tried to call my boss in the car to explain why I wouldn't be coming in.  That didn't go well - my husband ends up talking to her.  Feel cramps at home.  Yippee.  Labor.  24 hours too late. 

Our dog walker arrives mid-tears and we have the first of what will be many many awkward conversations.  Back to the hospital.  Social workers.  Long stream of well meaning people.  Go away.  Am later moved to a recovery room in a wheelchair with deadbaby on my lap.  A nurse says something in passing about the baby going to the nursery.  Cruel.  She must've been brought up to speed because she later comes in and hugs me, apologizes.

They left him with us, wrapped in a blanket in an isolette.  "Until you are ready".  Ready?  That doesn't even merit comment.  My mom had flown back down, came into our room - and gasped.  He was perfect, except his chest didn't move.  I held him, willed his chest to rise - and failed.  Seven years later sleeping babies still cause me to catch my breath.

Thirteen months later we have a second child and I make an endless stream of people uncomfortable when they ask if he's my first.  HOW AM I SUPPOSED TO ANSWER THAT?  Years later, after I have my third baby in four years, I decide it's OK to just say "Two".  But my second, though a joy and delight now, screamed for 9 months straight.  And despite the endless pumping, the teas, the herbs, and the best efforts of various lactation consultants and the La Leche league, nursing does NOT go well.  It's probably OK to stop trying when the Nursing Nazis at La Leche say you've done your best, lots of mothers bond with bottlefed children.  Yet I don't give up.  Damn if I can't sustain and nourish at least ONE child.  Many arguments with the spouse about bottles, formula, supplemental feedings.  But the boy stays at over 95% on the charts so I either successfully failed to starve him or the extra formula my husband snuck him staved off malnutrition.

Fast forward 2 years and we decide to try again.  Because now that the boy has stopped screaming 24/7 he is the most fascinating little person.  Tomes have been written about mothers and their children which I don't have the skill to re-brand and personalize but I am deeply in love and proud of my above average contribution to the world.  He is FULL of joy, fearless, adventurous, affectionate.  And has dimples to die for.  But are we ready?  Hubby's work isn't going well but taking maternity leave in the summer would be great for me.  No timing issues.  I've now hit the magic 35 year mark so my OB offers me an amnio which I instinctively agree to.  Tests?  All Good.  Best to rule stuff out - we don't need any more surprises.  Later my husband and I have a terrible terrible argument about the risks thereof.  I don't want a baby with Down Syndrome  (There.  I've never before admitted I actually said that OUT LOUD.  Cue Irony.  This plot line is even too facile for the Lifetime network.  Matt, the dear, has many faults, but has never once reminded me of this.).

I eventually wear the hubby down and we go in.  I now have full fledged access to the perinatal center.  Advanced Maternal Age.  Prior fetal demise.  Believe it or not you need to have more than one stillborn baby to be technically high risk (seriously?) but I think my OB makes a call.  We are there, Matt & I, for our level II ultrasound and the amnio.  The baby receives a glowing review on her ultrasound (good girl!) and I am suddenly backpedaling... the neonatologist is wearing a scarf and matching yellow surgical gown.  She says that the risks of (what? risks of what? I don't remember how she put it) after a clear Level II ultrasound are (ridiculously low). She literally has the needle in hand when I say no thanks after all, sorry to be a trouble.  She THEN says, oh good - given your history (amniotic band choking off baby's cord) I wouldn't have wanted to mess with the amnion anyway.  Mess with?  Is that what you'd been planning to do?  That oddly hadn't occurred to me that but I suppose sticking a giant needle through it could be considered messing with it.  Thanks for the full disclosure doc - phrased like that I could have just conceded the point to my husband and skipped the fight.

Blood tests are clear.  Fancy ultrasound is clear.  Maybe I can relax a bit?  But I still get to go back to the perinatal center for more monitoring.  Good insurance, let's keep mom relaxed.  I get the same ultrasound tech for the next two visits.  She seems bored - you really don't need to be here.  There are usually people crying in the waiting room, overheard whispers with bad news.  Low grade anxiety but everything is normal, WE are healthy.  It’s not like lightening could strike twice.  Every medical professional I encounter repeats this in some manner.  Fourth visit, new tech.  She asks a lot of questions about my first.  No, it wasn't amniotic band syndrome.  Which is an actual condition with real statistics and a support group.  It was just a lone loose piece of tissue that wrapped itself around the umbilical cord and pulled tight when he dropped.  Like a hangman's noose.  They don't have statistics for that - we are lumped into the "cord accident" category.  I am relaxed, lying on the table in the dark, impressed with the tech's thoroughness.  Touched by her interest, as compared to the prior slouch.  She comes back in with the  neonatologist.  Heart.Hole.Surgery.High.Correlation.with...

I am in risk management - casualty claims.  I used to read jury verdict books for fun because they are adventures in randomness.  Bits of an airplane fall off and comes thru your roof as you're making coffee.  Spare monster truck tire falls off back of truck, rolls down freeway ramp, bounces over guardrail and lands on your windshield.  No amount of defensive driving will prevent that.  The truly non-negligent claimant is blindsided, no warning, no opportunity for self defense.  That's twice now.  Life 4: Me 1 (Life gets points for the nursing thing too, and for my last minute pathetic request for an epidural; I get the boy).

We hear more statistics and incongruously get the amnio done after all.  Best to understand in advance - Trisomy 21?  Confirmed.  I won't say there weren't tears but driving home from work after getting that phone call I can picture my daughter standing in a pool of sunlight.  Arms stretched up.  MY DAUGHTER.  It's the closest thing to a sign from God I will ever see. 

We move forward. My husband says Trisomy 21 for months, as if it's a better term than Down Syndrome.  I read message board posts from people who abuse "LOL" and emoticons, and use their/there interchangeably.  I read impassioned essays about grammar - Down Syndrome, not Downs/Down's/downs.  A child with Down Syndrome, not "downs baby".  Full disclosure here:  I am a card carrying pro-choice the-world-is-over-populated leftie.  But I don't consider it.  I think of my daughter standing in the sunlight.  It helps that I'm at a Catholic hospital so no one asks but I was hoping someone would so I could throw something at them.  Had it planned out - What would be close by?  A stapler?  Best not grab the Sharps box.  Would aim to miss but I don't have great aim so might hit them accidentally.  Unlikely that anyone would actually prosecute, given the situation.  Permission to behave badly?  Granted.  But I am disappointed.

Here's the thing - In addition to my "Cue Irony" comment about DS I had also, in the course of a couple counseling sessions after deadbaby, mused that had my son NOT died that Sunday night, that lone loose piece of tissue could have just as easily choked off only half his oxygen, leaving his heart beating but his brain damaged.  I have long pondered this - with the arrogance of not having to choose I said (again out loud!) "I don't know if I would have wanted that".  One counselor agreed with me.  The goal of parenting is to turn little people into self sustaining big people.  I was such an ass.  God may not intervene in sub-Saharan African but girl in suburbs in need of Life Lesson?  Gotcha.

My daughter spent about a month in the NICU as a "feeder/grower".  She was full term so moved through that place like Godzilla.  [She was also stubbornly breech so came via C-section on top of everything else.  I will never have the chance again to try for a drug free delivery.  We hadn't bothered to try during our first, what was the point?  I was happily heavily sedated.  And I caved with, what later turned out to be, just minutes to go during my second delivery.  More irony.  I no longer remember why I wanted to try without drugs - earn a merit badge for toughness?  I think I get one of those anyway.]

We tried to nurse a couple times - she latched on once or twice for a second but didn't have the strength or energy to take a bottle much less bother trying to get a couple drops from the useless bits of mockery that were my boobs.  We took her home on a feeding tube and spent an hour eight times a day giving her a bottle.  Let me clarify that - every three hours we tried to give her 4 ounces of high calorie formula. Thickened, because as the fluids built up in her chest cavity they pressed up against her stomach and made her violently reflux.  It took an hour for those 4 oz to drip down her throat.  Sometimes we gave up at 3oz.  We slashed open nipples and squeezed - oral development could fuck itself.  She often spit those precious ounces back up, vomiting with a height and distance that frat brothers would boast of.  Once she hit one of the dogs as he walked past.  Two hours later, we'd start over again.  There was a lot of TV.  I pumped for a while during hour two of that cycle because if anyone needed breast milk it was this girl.  But my son needed a mommy too and it's hard to play cars with nipples flying back & forth.  And my contribution was, shall we say, negligible.

She was also on a complicated pharmaceutical schedule which included digoxin.  Digoxin is derived from foxglove which I have in the garden and it's lethal in larger doses -  someone tried to kill James Bond with it in one of his movies.  I spent a lot of time thinking about this and the fragile broken line between life and death while I sat with her on the couch keeping her alive with a non-developmentally-sound plastic nipple in her mouth.

When she's four months old her heart has grown so that it's as big as a walnut.  A Walnut.  This makes the surgeon happy and we get a go date.  She weighs almost eleven pounds.  I've transferred departments and my new boss of one day comes by before I'm about to take leave and says, "I'm sure everything with be fine".  Fuck you buddy.  FUCK YOU.  Later I realize that this is most personal thing he's ever going to say to me and the effort involved must have been staggering.  I've forgiven him for tempting fate like that.

Open heart surgery.  They stopped her heart and lungs and sent her blood through a machine for 8 hours while they cobbled together a functioning structure from what wasn't.  It goes well and she is discharged from the hospital a week later, the day before Thanksgiving.  Think about that for a second - they sliced open her chest, sawed through her rib cage, rearranged the tissue thin internal structures of her heart, and sent her home seven days later with not even a script for Tylenol.  Because OTC Tylenol will be just fine.  My daughter KICKED ASS.  She gets home, sucks down her bottle in minutes and looks around for more.  We can suddenly hear her cry from across the room.  Before her surgery she was so weak before we could not hear our baby cry.  We attributed a lot of her weakness to Down Syndrome - turns out, nope, that was her spending every calorie she had trying to keep the leaky sieve of her heart moving.  Did I mention she kicked ass?

Heart working, she starts to sit up, eventually starts walking, and gets into everything, just like her brother did.  Her laugh is magic and her first word is happy.  Happy baby.  She loves to play with my hair and to throw the dogs' toys for them.  Though she doesn't so much throw as drop from up high on the couch.  The dogs nonetheless appreciate her efforts (or are starved for affection, but that's a different story) and they return, again and again.  She has dozens and dozens of hair bows and cute dresses.  Strangers react warmly to her.  She is only nice to those with long hair.  I do not trust they will treat her as well in ten or twenty years.  We pay a LOT of money for life insurance and to an attorney to set up a special needs trust.  Meanwhile we sometimes run out of grocery money.  I think of the life insurance as our way of conning Fate into keeping us both alive for her.  Blood money.  I will most likely outlive her.  And then I will have lost two children. 

She gets minor outpatient surgery on her eyes and needs a second round because, obviously, we fall into the 10% re-do category.  10%?  Practically a money back guarantee!  Talk to us about the statistics - we are the .001 percenters.  Though I don't actually know what the odds are of a false negative blood test and level II ultrasound.  I spend a lot of time thinking about it but don't do the research because I don't think it matters anymore.  I nonetheless buy lottery tickets.

There are other tangential stories - my husband was wearing the same shirt on the day we delivered Brennan as when we learned my girl would need heart surgery.  The shirt has now been put away, along with the other trinkets the hospital gives you to remember your deadbaby.  He has a closet full of clothes - why that shirt, that day?  Both my SIL and next door neighbor had poor test results and ultrasounds and very good chances their babies, only slightly older than my own, would have DS.  Not 1 in 300-something.  1 in 34, 1 in 20.  It's a catholic group - they prepared themselves but were passed over.

I was not raised in a church.  I don't think I believe in god - I can't even decide if God should be capitalized.  I can't imagine He's all that involved with this world because I don't care WHICH church you go to or in which order you sit-stand-kneel on Sunday (or Saturday), no God I believe in is going to let babies starve to death.  I have developed a strong loathing of our local church school since they won't even TRY to teach my daughter - the adorable representation of everything they march and lobby and pray about.  Fucking hypocrites.  [Sorry Gigi].  I think there are too many unwanted, unadopted children in the world to spend time arguing about frozen embryos*.  But my dirty little secret is that I agree with the right wingers ...life is precious.  It is a fucking miracle we are here & if we are lucky enough to make it then we should take full advantage of the world God has given us.  I am newly and acutely aware that taking advantage doesn't necessarily mean college, travel, and catching the latest gallery opening.  Sometimes it just means blowing bubbles in the grass and throwing the dog's Kong.  There's a lot of crap online about being "chosen" and "special kids for special parents".  I am loathe to join that crowd - they seem to be the same people who believe God supports their football team and doesn't notice the starving babies because their particular denomination doesn't have a building in that particular country.  I am much more comfortable being a statistical freak.  But though I may not believe in God I believe he passed over my neighbors and gave me my daughter and I am profoundly and deeply grateful He did.

I do occasionally wonder about the path our lives have taken but the "what ifs" are monstrous.  If Brennan hadn't died, we would not have had a second child so soon.  My son, who crept in my room not too long ago to cuddle, would not exist.  Not exactly Sophie's Choice, but just as intolerable for the imagination.   How much does the past inform our present?  We are not pre-destined bits of flotsam, hurled thru life & victims of fate, but in what parts do nature, nuture and experience contribute to our soul & character?  If Brennan had not died, would I have embraced all 47 of my daughter's chromosomes as fully?  Could I have pictured her standing there in the sun?  I'd like to think so but I can't be sure.  That tiny speck of doubt is humbling.  Fall to your knees humbling.  By the Grace of God...  We are not victims.  We are happy.  And grateful. 
- krlr.


P.S. This story makes my OB sound like an ass but he really was very kind and broke the news as best he could, & then called several times after to see how we were doing.  We moved out of state halfway thru my second pregnancy so he wasn't able to deliver my son but sent a nice note after receiving the birth announcement.  Later ultrasounds techs assured me NO ONE would have picked up my little uterine landmine at the standard 6 month ultrasound, three months earlier.  It probably wasn’t even loose yet.  The baby was growing well, the heartbeat was always normal - there was no warning.  He was not negligent and we never considered a malpractice claim.

*More tangent: I would so VERY much like to adopt, because we sure as shit aren't going to try for any more children the old fashioned way, but we can't afford the extra milk right now, nevermind the fees.  I worry about RAD and whether my daughter with special needs, ass kicker though she is, could hold her own.  I worry that a traumatized child would need more time than I could give since I have to work to provide for my other two.  But we will move forward soon - I'm sure it will be OK, right?  Right?  (cue ominous music).

13 comments:

  1. This is beautiful, just beautiful. Thank you for your honesty and your heart and for sharing it with us.

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  2. I am so moved by your generosity and honesty. The vision of a little girl in the sun, I will not forget that image especially having myself a girl who brings the sun into my own cynical heart.
    Have you ever heard of Glow in the woods site? It is a haven for baby lost mothers in a world that often feels impatient about lifelong griefs.
    You are part of my community and I am proud and happy to meet you.

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  3. I do know Glow in the Woods (& also Lay Me Down to Sleep for pix) - I actually DON'T go there very often because I try not to wallow, though obviously this week I'm indulging. Thanks for taking the time to read my little novella. It means a lot to me. As does being here, having this space, which gave me the the means to meet you. There IS a community & y'all are fabulous. xoxoxo.

    Also, my sister said that she got about 78 copies in her Reader as I kept tweaking the darn thing - I rewrote a whole new last paragraph as I was driving in on Monday (mentally writing, of course - I promise both hands were on the wheel!). So, Whoops! Sorry about that. :)

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  4. I didn't get but one copy in my reader. I don't think glow in the woods is wallowing- for me its paying homage to our grief and when it rises up to choke we need the validation to digest it until the next wave. XO to you!

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  5. THis is beautiful, you are strong and courageious for sharing it. Thinking of you today.
    PS - Don't let the RAD scare you, really! Adopt domestically, keeping birth order, a little one, you might get issues but you can handle it and the RAD in the small ones is different than it is with my big ones and with little ones it means you sepdn a lot of time with them, playing, teaching them to be a kid and I am sure your daughter would love that extra time with Mama.

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  6. S - Waves really are such an apt metaphor for grief, aren't they? You're fine, enjoying the beach & the sun, then a rogue wave knocks you down at the most unexpected moment.

    J - When we get closer, I'm going to start cyberstalking you. :) Because I'm sure you have time to answer a gazillion inane questions. Thanks for the kind words.

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  7. I'm so sorry it's taken me until today to read this post. Thanks for sharing your story--so generous, so beautiful.

    For what it's worth, I had a totally different pregnancy experience with Maybelle, but I had some very similar feelings re: DS (i.e. I was certain there was no way I could handle having a child with a cognitive disability, and now I couldn't be more grateful for her presence in my life).

    At some point in the not-so-distant future, I'm going to be contacting you about some interviews I'll be doing this summer as part of a research project. This piece of writing answers a bunch of the questions I'm wanting to ask some mothers.

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  8. I'm game - are you asking the "did you know" question? I went to a bruch yesterday where that came up a LOT - will write something about it tonight. We now have internet-safe email, so contact away: krlrtrialrun at gmail.

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  9. I don't have words to articulate the power and beauty of this post.

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  10. Amazing post. You seem like an old friend already, but I guess I presume too much. I thought I was already following too many blogs for optimal mental health, but I'm definitely going to have to add yours. Optimal mental health is over-rated.

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  11. Thought I'd let you know I reread this post today because I'm doing some research-style writing. It made me cry, as always. Standing in the sun, arms in the air! I can't wait to meet her in person.

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  12. <3 Love this post and all it's honesty.

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