Six years ago, I was 37 weeks pregnant for the first time. Perfectly healthy. No trouble conceiving, just saddled with credit card debt, late to get married, let's buy a house first 'cause we need stability - babies like stability. Mom and her beau were down to visit.
Sunday - We had Chinese food. Then we went to see some Steven Segal movie. The movie was loud. Baby kicked HARD. We spent an hour picking out a ridiculously expensive frame for an otherwise cheap print. We took bets over dinner to see when our son would arrive.
Sunday night - Mom and her beau fly home.
Monday morning - walked the dog. Baby always slept through those walks. Took a shower then off to the OB before work for a previously scheduled appointment. It was close enough to our due date for weekly appointments. Laying there on the exam table. Nurse can't find the heartbeat with the Doppler.
Time stretches. Lose that giddy expectant feeling. Why can't that stupid bitch find it? More time - seconds? Minutes?
Am no longer cheerful - nurse was always nice but she's also chubby and has bad skin. 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. Which was on my belly. I'm so sorry.
Call my husband from the OB's office. Which is cluttered with FEET of paperwork. Don't you have a secretary? Remember thinking that if my husband is anything less than exemplary, if he blames me, I will leave him.
After he arrives, we go back to the ultrasound (is my memory right here? WTF?) OB notes reduced amniotic fluid - had I noticed any leaking?
Mark one - what did I miss? Mentioned how hard he'd been kicking the night before. Probably death throes.
Mark two. 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 and she could tell the difference.
Mark three. 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 and couldn't do it on this or this day. So sorry to disturb you 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.
Dog walker arrives mid-tears. First of many many awkward conversations.
Back to the hospital. Social worker. Long stream of well-meaning people. Go away. Am later moved to recovery room in wheelchair with deadbaby on my lap. Nurse says something in passing about the baby going to the nursery, must've been brought up to speed because she later comes in and hugs me, apologizes. Mom flies back down and gasps at deadbaby in the incubator.
13 months later we have second child. Make 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. Colic - nothing actually wrong that we could fix (but, oh my, did we try). 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 children through bottles. Yet you don't give up.
Damn if I can't 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 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-phrase 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 work out well for me. Again (sorry guys!) no timing issues. I've now hit the magic 35-year marker 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. My hubby, the dear, has many faults, but has never ever 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, my husband and I, for our Level II Ultrasound and the amnio. The baby receives a glowing review on her ultrasound (good girl!) and I am suddenly reversing myself... 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 actually has the needle in her 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 amnio anyway.
Mess with? Is that what you'd been planning to do? Oddly, it hadn't occurred to me that sticking a giant needle through it would qualify as 'messing with.' 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 you know. 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 [NASA begs to differ].
Fourth visit, new tech. She asks a lot of questions about my first. No, it wasn't amniotic band syndrome, which is an actual syndrome with 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 (different) neonatologist. HeartHoleSurgeryHighCorrelationwith...
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 through your roof as you're making coffee. Spare monster truck tire falls off back of truck, rolls down freeway ramp, bounces over the guardrail and land 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 get the amnio done after all.
Best to understand in advance: Trisomy 21.
My husband says this 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 the importance of that 'S' - Down Syndrome, not Downs/Down's/downs.
Full disclosure here: I am a card carrying pro-choice the-world-is-over-populated leftie. But I don't even consider it. 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 the throw planned out - What would be close by? A stapler? Best not grab the Sharps box. Would aim to miss but 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, the lone loose piece of tissue could have easily just 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 and 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 happy to be 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 then spent one 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 to let those 4 oz drip down her throat. Sometimes we gave up at 3. We slashed open nipples and squeezed - oral development can 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. Which is what someone tried to kill James Bond with in one of his movies. It's derived from foxglove which I have in the garden. I spent a lot of time thinking about the irony of this 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. 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 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 (apologies to Aunt Becky).
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 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 now 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 (and admittedly only, so far) 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. Nonetheless the dogs appreciate her efforts (or are starved for affection, but that's a different story) and they return, again and again.
She still does not like her grandfather (sorry Papa!). She has dozens and dozens of hair bows and cute dresses. Strangers react warmly to her. I do not trust they will treat her as well in ten or twenty years. She is only nice to those with long hair. 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 the life insurance is our way of conning Fate into keeping us both alive for her. Chances are, we will outlive her.
She gets minor outpatient surgery on her eyes and will probably need 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 percentage is 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.
It shouldn't matter. Nonetheless, I buy lottery tickets.
There are other tangential stories - my husband was wearing the same shirt we delivered my first son in on they day 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 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. 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 and if we are lucky enough to make it then we should take full advantage. 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.
I may not believe in God but I think he passed over my neighbors and gave me my daughter and I am profoundly and deeply thankful that he did. Because I LOVE blowing bubbles on the grass and throwing that foul slimy Kong to make my daughter laugh. 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 more comfortable being a statistical freak.
On the rare occasions our story is presented in toto, it usually elicits something along the lines of "holy motherfucker" (and the ever annoying "how do you do it?"), but there are worse stories out there. Some of my online browsing is spent ritualistically reminding myself of this.
But we have health insurance, a job I enjoy when I don't feel crappy for ignoring my kids while I'm working, and our house payment is current, even if the other bills aren't. I am still married and actually still like my husband. At least 80% of the time. We have 3 dogs, two kids, kisses, and bubbles.
If I start counting, it's not Life 4: Me 1, it's me WIN.
My rambling narrative can easily be mocked - "Mom Loves her Kids, Struggles with Faith" or "Mom Appreciates Life more after Loss."
I don't blog - well, okay, I have one but it's only pictures of the kids and only the grandparents look at it. I wanted to keep it private but Gigi couldn't manage the password. I don't write anything there except the occasional explanatory caption. Better writers than I have described the peace that comes after being slapped around by fate. I usually gloss over our story - it makes people squirmy if I provide any details, or even relay in person. 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.
We were here.
We are happy.
Maybe it's not a Mushroom Print for God, but rather against (for? to?) Fate. Fuck You Life - you sent us a semitruck full of rotting lemons and we turned them into fucking lemon meringue pie.
PS. This story makes my OB sound like an ass but he really was very kind and broke the news as best he could and then called several times after to see how we were doing. We moved out of state halfway through 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 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, never mind 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, shot of storm clouds... strap yourselves in, Act Three is sure to be a doozy…).