Friday, January 16, 2015

Before the Beginning

Dear Ellie,

One year ago today, our worst nightmare came true.  Your mother was 22 weeks pregnant and right before heading off to bed, she called me in a panicked voice from the bathroom.  There was blood.  At first, we kept our cool.  We'd gone through scares before earlier in the pregnancy, and any pregnancy heading into the third trimester can put strain on the body.  Capillaries can burst, hematoma's can erupt.  Still, we didn't want to take any chances.  We made the hour drive to St. Mary's because, we knew, that was where the level 3 NICU was. 

I remember the tension during that car ride.  It was so thick in the air that it felt like it could suffocate us.  I swung back and forth between telling your mother that it was probably nothing and asking frantically: "Can you still feel Ellie kicking?

When we arrived, at the hospital, we sat around for some amount of time approaching eternity before ever seeing a healthcare professional.  It probably wasn't as long as I remembered it.  I do however remember sitting there, feeling like our dreams were rapidly disintegrating to the rhythm of paper work and inane questions about insurance.  I don't know how I kept my calm.  I'd never felt so restless and so angry. 

When we finally did see a nurse, she gave your mother an exterior ultrasound.  According to them, everything appeared okay.  Our OBGYN didn't think it was worthwhile to come out that night to make an assessment.  He told her to come by the office in the morning. 

Whenever I think back to this moment, the guilt returns too.  I wish I would have been the irritating, obnoxious parent.  The overprotective kind that sees danger and peril for their child around every corner.  The kind of parent that OB's and pediatricians roll their eyes at as soon as they leave the office.  I should have been the kind of parent who would have insisted that the doctor come out to the hospital at one in the morning.  But I wasn't that kind of parent.  I was the polite, "sensible" parent that night.  So we went home and your mother bounced around on a cervix that we were unaware was growing more and more dilated by the minute.  Would you have been born a micro-preemie had your mother gone on bedrest that night like the doctor should have ordered?  I don't know, but it would have bought you at least a few more days.  In the NICU, even a few extra hours in the womb can be the difference between life or death, good health or crippling disabilities.

The next day, I was working in the morning with your Uncle Zack when I got a call from your mother.  She'd gone to the OB's office that morning, the same doctor took one look at her, and then he sent her immediately back to the hospital.  Something was terribly wrong.  Her cervix was open and your gestational sac was bulging out.  So sensitive was the situation that they wouldn't even examine her for fear of causing a rupture.  She could go into labor and deliver at any moment.  If you'd been born right then at 22 weeks, or even days after, there would have been no hope for survival.

I called your Grandma Raju and we drove to the hospital together.  I can remember every second of that terrible drive.  I wondered whether you'd be born before I got there.  I wondered whether I'd ever get to see you, alive.

When I arrived at the hospital, they sent me straight to labor and delivery.  Labor and delivery? I thought.  So then it really is that bad?

I moved through the halls at a near jog, and when I finally got to the room, your mother was on her back, her feet dangling higher than her head.  It's around this time when my memory doesn't quite serve me as well.  So many times in the past, I'd imagined being there in labor and delivery with your mother.  Sometimes, in my imagination, it was joyous.  Sometimes funny.  Sometimes a little bit tense.  But never was it drenched in despair.  Maybe that's why I can't remember the next 3-4 days in labor and delivery very well.  I think my brain was in revolt.  Why file memories of days that must be false?

I do remember the technical aspects.  No one knew exactly what had gone wrong.  Maybe incompetent cervix?  Maybe a placental abruption?  Maybe an infection?  Either way, we were told that contractions would probably come soon.

When doctors are facing a difficult but winnable battle, they tend to look on the bright side of things.  Tell you where there is hope.  But none of our doctors tried to reassure us that first day.  I remember asking one of the OBGYN's what the odds of making it through the week were.  He didn't say "good."  He didn't even say "maybe."  Instead, he closed his eyes, he shook his head, and left without saying a word more.

After we were alone, your mother and I just sat there.  All through the afternoon and into the night, we listened to the sounds of babies being born.  Large, healthy babies with lungs that bellowed mightily.  We listened to one happy ending after another after another after another.  We listened to mothers complaining about the pain of childbirth while your own mother kept wishing that she could die if it meant that you could live.

And then I was forced to face a surreal thought.  Started to wonder about a thing I never imagined I'd wonder before.  Would I choose to hold your tiny little body before you passed away?  It seemed so impossible.  How could I, but how couldn't I?  I knew that if I did, it would haunt me for the rest of my life.  I knew that if I didn't, it would haunt me for the rest of my life.  I pondered that question over and over in my head.  Is a few minutes of true love worth a lifetime of missing it?

It's impossible to describe how heavy our grief was at that moment.  It's a grief that alters the very core of who you are.  It felt like a literal weight lashed to my heart, pulling it down and down and down.  Pulling it right out of my body.  Pulling it to the center of the Earth.  It was a grief that makes you forget that you were ever happy or that you could ever be happy again.  For us, it wasn't so simple as just losing a baby.  It was more than that.  Your mother and I have been in love since we were just children ourselves.  All during that time we wanted you, but were thwarted every step of the way.  For years we'd devoted our entire lives--- our habits, our finances, our time--- to making you real.  We'd spent half our lives and half the mortgage of a house to get to that point.  And what's more, it was our last chance.  At just 30 years old, our time was spent.  The IVF cycle that gave you life was disastrously bleak and disastrously expensive.  Three eggs when there should have been dozens.  It was a miracle that it worked at all.  So we had no consolation of knowing that we could "try for another baby."  You were our last--- our only--- chance.

I don't know what superhuman reservoir of will we dipped into to keep from crying.  I felt like there was an ocean of tears above us, pushing down on our skulls, but we fought them back as best we could.  We couldn't cry, you see.  If your mother cried, it could induce the contractions.  And if I cried?  It would make her cry.  "Don't cry, don't cry, don't cry."  That was the mantra we spoke as we listened all through the day and night to all of those healthy babies being born.

Sill, I found ways to steal tears.  I remember sobbing silently at night while your mother discovered an hour of sleep.  I remember leaving the room to weep outside.  "Why is that man crying," a little girl asked her mother.  Hearing her made me cry even more pitifully because it made me wonder what your voice should sound like.

I can't even imagine how your mother must have endured.  She was the one who felt you kicking.  Each kick must have sounded like little giggles.  Little declarations of your life.  "I'm here."  "I'm happy."  "I love you."  To me, you were still an abstraction.  To Rani, you were already her daughter.  I don't know how many times she rubbed her belly and told you she was sorry.  It must have felt as though she were holding you in her arms, but were slowly slipping from her grasp and down toward a pit.      

But during that first day and night in the hospital, we didn't spend all of our time brooding.  Some of it we spent obsessing over the monitor attached to your mother's midsection.  It measured movement in her abdomen like a seismograph measures earthquakes.  It was meant to measure contractions.  Each new contraction was a step closer to delivery.  One more sand grain ticking away in the hourglass.  Sometimes, it wasn't clear whether there was a contraction or not.  Was that bump there on the graph because your mother shifted in the bed?  Or was it just irritation?  Or you thumping inside?  We made all kind of excuses to explain away each new bump.

We tried our very hardest to laugh, too.  It was a forced kind of humor.  Laugh track caliber.  But it helped.  We made fun of all the different ways that women screamed in labor.  "Aaaaaooooogggahhhh!" or  "Ahhhh, ahhhhh, ahhhh!" or "Graaaack, griiiiiick!"  "That one sounds like she's playing in Wimbledon!" your mother might say of one woman, or I might say: "That one sounds like she's rolling down a hill on roller skates without any breaks!"  To distract ourselves, we watched only comedy shows.  What a blessing that there was a Most Extreme Elimination Challenge marathon on at that time.  At the moment, nothing could be more comforting than watching thousands of game show contestants attempting to storm a make believe castle, only to be clonked by all manner a cruel, padded traps.

Your mother and I remained in labor and delivery for days.  Every hour was another hour that she could deliver.  I remember the nurses on that floor were mostly unhelpful.  Some became irritated and impatient when we asked for things, so I did my best to tend to your mother mostly by myself.  Adjusting the bed and getting water and ice and helping her eat and adjusting the cathetar line and emptying the urine bladder and attending to the other minutia of her situation.  It was a welcome distraction.  Still, when the lights went off and there was nothing but darkness and the sound of new life around us, our thoughts always went back to our slow motion tragedy.  Neither of us slept for days and days.  Gradually, it felt like my body was decomposing.  Rotting from the inside out.  It felt like the beating of my own heart was shedding bits of my body off like dust.  It could only be worse for your mother.  She was stuck upside down, couldn't move an inch, and there was a 3 centimeter wide hole in her body.            

Two weeks.  That's how long we needed to make it.  Then you would at least have a chance 50/50 change of survival.  How cliche it sounds to say that those two weeks felt like the longest two weeks of our lives.  No, they were like two additional lives.  During those two weeks, it was hard to remember what life was like before.  It was like trying to remember what you did as a child from the vantage point of your 90th birthday.  It's there in your memory, but hazy.  Distant.

But each time an hour passed, it felt like a glorious triumph.  Three days into the ordeal, there were little glimmers of hope.  The doctors were impressed.  They were cautiously optimistic given that the cervix hadn't dilated any further.  At around four or five days, they recommended that we go to Antepardum: the place that pregnant women go for long term bed rest.  That was the moment we were hopeful again.  It was risky though.  If you ended up being born up in Antepardum, they would have to transfer you down an elevator to the NICU.  In other words, moving you one floor could be the difference between life and death.  What a strange thought.

Regardless, your mother and I thought that a more relaxed atmosphere could only help her.  And it did.  When we were transferred to Antepardum, the nurses were kind, receptive, and attentive.  The room felt more like a hotel.  It might even feel like a home if we lasted long enough.  And most important of all, no more cries of newborns.  Suddenly, I had a magical thought.  Perhaps you would survive, after all.  Perhaps you could stay inside your mother until 24 weeks.  Or even longer.  It seemed like such an oddly romantic notion: your mother and I stranded in that hospital room for the next weeks or months.  It seemed like some kind of camping trip.  Maybe I was just drunk on the notion that our dreams of a family were still yet alive.

I went about making the room seem just a little bit more like home.  I brought things from the house.  Your mother missed the cats, so I took pictures of them, printed them, and taped them to various parts of the room as though they were hanging out with us: one lounging atop the TV, another atop the door frame, and the last one on the headboard of the hospital bed.  Nearby, your mother had every photograph we'd ever taken of you via ultrasound.  But while the room was a bit more comfortable, your mother was still turned upside down and couldn't leave the bed, not even for the bathroom, so I went out to the store and purchase a female urinol.  I named it "Piss Master 3000" and labelled it so with a marker as though it were some high tech instrument.  "Need the Piss Master 3000?" I would ask after she'd drank a large glass of water.  I bought a calendar and put it on the wall.  I wrote in all of our objectives.  24 weeks.  26 weeks.  28.  Then I marked off each and every day that went by.

I spent a lot of time just looking out the window.  Watching the sun slowly rise, then slowly set.  Slowly rise, then slowly set.  I felt like the Girl in the Sphere.

At one point, I purchased a hand mirror so that if I held it just right, your mother could see the sunsets.

Soon, we'd arrived at 23 weeks of gestation.  Just one more week to go and we'd be at viability.  Since the ordeal began the week before, our spirits had never been so high, but that prior week had taken its toll on me.  I realized soon that I was getting sick.  I felt devastated.  Like I was abandoning your mother in her highest time of need.  But I couldn't stay.  Getting her sick would be ruinous, and I was terrified that I may have done so already.  I slipped away at 1 in the morning.  It was a cold, cold night.

I remember laying in bed that morning, miserable and missing both of you.  I was so sick I could barely get out of bed.  So instead, from bed, I started inventing a story for your mother.  As soon as I'd returned to her bedside, I decided I'd put on a grand pen and paper role playing campaign for her: a long, make believe novel in which she would play a part and steer the course.  It was the perfect thing for her to do on bedrest.  Her body was stuck in bed, but I planned to take her mind, and worries, elsewhere.  I spent all week planning it.  Developing a story.  Drawing up maps.  Inventing exotic people and places.  In the end, we would never get a chance to play it, but it would become your story: "A Place Between Worlds."

When I finally returned, your mother was at 24 weeks gestation.  "Viability," as it is often called.  The doctors and nurses were visibly happy.  They were all astonished that things had gone so well.  We celebrated those victorious two weeks.  Just 14 days prior, we thought it was over, but now you had a chance and each passing day would make you stronger and stronger.  50 percent odds of survival, unthinkable just a month before, now seemed spectacular.  "26 weeks would be a good point to reach," we both said to each other.  "Or 28.  Maybe even longer."  I remember very distinctly, for the first time, that I felt like everything was going to be okay.  We settled in that night, expecting that we'd be there for weeks and weeks to come.          

But then, around 10 o'clock, the blood came again.  And then the "seismograph" attached to your mothers abdomen began picking up wild spikes of activity.  An infection had set in and that terrible fear returned.  The doctors took action.  They gave your mother prenatal steroid shots to help your lungs develop, and then they shot her full of magnesium sulfate to delay what was now clearly signs of labor.  The magnesium sulfate made your mother feel as though she'd been lit ablaze.  Like she was burning from the inside.  We were listless, bereaved once again.  I remember sitting there that night, feeling your mother's belly, and feeling you kick for the first and last time.

They transferred us back down to labor and delivery.  Now, with certainty, it would be very soon.  If not the next day, then the day after.  At this point, they sent one of the neonatologists from the NICU to talk with us.  To give us the likely outcomes and to tell us our options.  We listened grimly.

"Your baby has a 1/2 chance of surviving," she said.  "If she does survive, she has a 1/3 chance of severe disabilities, a 1/3rd chance of having moderate disabilities, and a 1/3rd chance of having mild or no disabilities."      

After she left, I went about trying to extort a good outcome from statistics.  To figure out where you sat on the ambiguous bell curve of 24 week preemies.  You were a girl, had no gestational problems, got everything you could have possibly needed in utero, weren't exposed to cigarette smoke or alcohol or drugs.  This all had to count for something, didn't it?

For the next day and a half, I remember being furious at the nurses again.  Gone were the tender nurses from Antepardum, replaced instead by those who saw our unfolding tragedy as just another boring day at work.  Bloody tissues were piling up.  Your mother was writhing in pain and sitting in a pool of her own blood.  No one seemed to be paying attention.  How you would be born could be the difference between life and death.  We needed to avoid a vaginal birth because it could have crushed your fragile brain or damaged your organs, yet no one was closely monitoring your mother.  A few big contractions and your tiny one pound body could spill suddenly on to the bed, battered and bruised.  When I finally got the attention of a nurse, she examined you're mother's cervix, turned to us with a shocked expression, and sent your mother immediately to the operating room for a c-section.  "I went in to feel the cervix and the baby felt me back," she told us.

They rolled your mother toward the operating room without me.  The situation was too pressing to delay.  When I arrived at the operating room doors, the doctor who would be performing the c-section came to give me some scrubs.  It was the same doctor who was supposed to come to the hospital 2 weeks before, but didn't.  He had a grave, serious expression on his face.  Mixed, perhaps, with some guilt that seemed to harden his determination.  I was oddly glad that it was him who would be doing the surgery.  He wasn't arrogant like some doctors tend to be.  He had a wrong to right, however large or small it might have been, and I knew that that could make a difference.

The doctor quickly returned to surgery.  In a daze, I tried to put the cap for my shoe on my head, instead.  Once I was properly dressed, I waited.  Other fathers-to-be passed by.  They saw my scrubs, so they grinned and nodded and congratulated me, unaware that you were coming 16 weeks early.  I smiled back at them, but I didn't know how I should feel.  I kept thinking of those statistics, over and over again.  1/2.  1/3rd.  1/3rd.  1/3rd.  At that moment, it was impossible to imagine a day like today.  Impossible to imagine you snoozing in my arms, plump and warm and happy as though nothing had ever gone wrong.

Eventually, I was invited in.  Your two grandmothers waited outside.  When I arrived, the surgery was already in full swing.  The floor was slick with blood and other unidentifiable fluids.  I came to your mother's side.  Her face, normally brown, was instead green.  Her teeth chattered.  It was strange, seeing her in that state of altered consciousness.  I kept thinking of how your delivery was supposed to be.  It had been so warm, so happy in my imagination so many times.  Instead, at that moment, I felt numb.  As though the colossal joy of seeing my daughter born was neutralized by the colossal grief of seeing her suffer and, maybe, seeing her disappear soon after.  As the operation proceeded, I couldn't control my emotions any longer.  While I quelched any sound from coming out, my face mask was soon thick with tears and mucus.  The NICU team was in the room and at the ready, prepared to leap into action as soon as you were born.

Then, at an unexpected moment, we heard the tiniest of little sounds.  Like the squeak of a mouse, then nothing more.  It was the only time we'd hear your voice for months to come.  Your mother and I both jerked to attention.

"Is she okay?" your mother asked.  She couldn't see you from her prone position.

I don't remember what I told her, but I remember not knowing whether the answer was yes or no.

I saw you--- a fleshy, gray mass--- in the hands of one of the surgeons.  I watched as she passed you quickly across the room to the NICU team.  The doctors took note of your condition.  The respiratory technicians fitted you with the proper ventilator equipment.  It took ages, and I was wondering how you could breathe during that time.  I watched the NICU team closely to discern whether you were well.  Were they frowning?  Distressed?  Working desperately?  Eventually, one of the respiratory technicians was relaxed enough to coo at you, and suddenly I was relieved.

"I think she's okay," I told your mother.

When they took you out of the room, I was invited along.  I kissed your mother on the forehead, then followed.  In the hallway, between the NICU and surgery center, I saw you clearly for the first time.  At that moment, I can't remember what your body looked like, or what the cart you were sitting in looked like or whether you were even hooked up to a ventilator.  I just remember your face.  That sullen little face with the eyebrows turned out, as though you were sad.  I wanted to fix you so badly right then.  Make that sad expression go away, and never come back.

A few hours later, the staff would take a picture of you, before they put a mask over your eyes.  I keep that picture with me, and every time I look at it, it makes me think of that moment when I first saw you.

And that was the beginning of your NICU journey.  Uncertainty had given birth to ever more uncertainty.  Still, those first two weeks were the hardest.  When the mountain you must climb to survive appeared the steepest.  That experience alone changed us, your mother and I.  Every time I see your face now, I remember the face I saw then.  And I want to be sure that you never have to wear it again.      


  1. Dana, how did you get the courage to put everything in words ? I never had and still don't have the courage to talk about what we went through with our twins. But, our emotions are not any different from what you both went through. I saw Rajender broke down and cry when our daughter was delivered. We know one twin is a boy. The sex of other baby was unknown. Rajender strongly believed it is a girl and it was ! I still feel guilty for the medical decisions I took with my twins. Oh, the greatest pain of all is to lose children! But, Dana for you both and for us life has changed, has become better. I hope it will become better and better. Hugs to you all. Lots of love, Manju

    1. Thank you Manju. Rani and I thought about you guys constantly during the whole ordeal. I remember thinking: "Manju survive the loss of her children. We can, too." Not just that, but your journey through infertility was even longer and harder than ours. I can't tell you how incredibly happy I am to see that you both now have found the happiness you so much deserved. If you three are still parked down in southern India come next year, maybe we can get the little ones together. We'll be taking a trip to see family around that time.

  2. God, what you and Rani have been through. This was definitely more than lump-in-throat inducing. I guess Ellie will read this one day and that feeling that she is utterly loved will be reinforced a thousand-fold.

    1. Thanks Sci. And yes, I sincerely hope that when Ellie reads this, she will feel sufficiently guilty for what she put us through that we can leverage it to make her behave however we'd like ;-)

    2. That's selfish and cruel ;)

    3. Well, when it comes to discipline, it's either that, the whip, or taking away desert for the night. ;)

  3. As always, thank you for sharing your story and feelings. We're coming up on a year for what we call "the bad stuff" starting. So many emotions that come to the surface.

    1. I know, its amazing how easily one can forget them, but vividly they can return. Part of me never wants to forget it, though.

  4. Whoa. That brought it all back and I'm 7+ years out. Our twins were born at 28.3 weeks after a cerlage at 20 weeks and a rupture of twin A at 26 weeks. They spent 90 and 100 days in the NICU. Although we were not fortunate enough to leave our NICU days unscathed, our boys are happy, healthy, and wickedly smart. :)

    I wish you and your family, especially the amazing Ellie, all the best.

    1. Thanks Stacie! So wonderful to hear that thinks worked out splendidly for both of your twins!