Born Too Soon: A Love Story

The story of a micro-preemie's fight for life in the Howard County General Hospital's Neo-natal Intensive Care Unit (NICU).

By Moira Mattingly

It wasn’t supposed to happen this way, not to say it had ever been easy.  I’d awoken that night in October, 24 weeks pregnant, with some cramps.  Uncomfortable and not able to sleep, I decided to watch television downstairs to take my mind off them.  They were not very painful so I wasn’t too concerned.  For some reason as I watched the clock on the DVR player absentmindedly, I noticed that these cramps were happening very regularly – every seven minutes in fact;   time to call the midwife.

Not long afterwards, my husband and I were in the car on the way to the Howard County General Hospital where my doctor would meet us.  It was 3 a.m.  I was numb, scared but also very, very angry.  It had already been a long road - now this?

When my husband and I decided to start our family, we knew it wouldn’t be straightforward.  He had suffered from Stage 2 Testicular Cancer as a teenager but had fortunately frozen his sperm – but that was 21 years ago.  Turns out, even in the world of cryogenics, that is a long time for sperm to stay healthy.  What we had always perceived as a straightforward session with a ‘turkey baster’ was not an option.  We had to go straight for In Vitro Fertilization (IVF) with two additional procedures called  Intracytoplasmic sperm injection (ICSI), (a procedure that uses microscopic instruments to inject a single sperm into the egg ) and assisted hatching (a form of embryo micromanipulation that involves creating an opening in the outer covering of the embryo).

On top of it all, it turned out that I didn’t produce many eggs – they wanted at least a dozen, I was lucky to give them four.  I felt like a failure.  However, on our second IVF cycle, 57 stomach injections later, I did get pregnant, identical twins that I miscarried at 11 weeks.  One day their heartbeats were there on the ultrasound, flickering rapidly like little beacons – the next day they were gone.  Dimmed. Vanished.  My body failing us all once again.  The weeks after that were a hard time, overwhelming sadness washing over moments of normalcy.  After a few months hiatus from anything baby related and much soul searching, we decided to try IVF one last time; our third attempt.  After that, we would move to adoption – my husband’s sister was adopted from South Korea and it was something we had always planned to do when building our family.

Which brought us to that night, driving to the hospital.  Scared, angry and numb.   We went straight to Labor and Delivery, and they immediately started a cocktail of drugs to keep me from delivering our baby.  When my doctor checked me, I was already 10cm dilated.  My husband later told me they brought the ‘crash cart’ into the room as they thought they would not be able to stop the delivery.  I’m glad I did not know that at the time.

The next week was a bit of a blur, I was fairly looped from the large amounts of magnesium used to try to stop my contractions.  One of the side effects is that you feel unbearably hot – the nurses turned my room’s thermostat as cold as it would go and wore sweaters or cardigans whenever they came in to see me.  Friends and family that would visit sat huddled in their coats.  My doctor told me I would be in the hospital until my baby came, I remember thinking, ‘wow, what am I going to do here for the next  15 weeks, guess I’ll catch up on some reading’.   In retrospect, I don’t think that was the timeframe the doctors had in mind….

When you are in a situation like this, everything becomes a series of small steps and milestones.   The first one of those was to keep my daughter inside me for at least 24 hours so that the steroid the doctors had given me to develop her lungs could have some effect.  If I could keep her inside me 48 hours longer, even better.

I made it 5 days, and then our daughter’s heart rate started dropping.  Time to get her out.  She was 25 weeks old.  We were so early in the pregnancy that we had not even picked a name.  We named her in our room in the labor and delivery ward, oxygen mask on my face, wired to too many things, drugged.   She would be Emily.

As we prepped for the C-Section, I was scared.  Scared Emily would die, but also scared of how she would look.  After all, she was only 25 weeks old.  Would she look like an alien from one of those tabloids you see at the supermarket?  All this fears went through my head.  The Neonatal Intensive Care Unit (NICU) team was there in the operating room, standing by, waiting for Emily.  They had been aware of her since the time I was admitted - the NICU always being alerted when a premature or distressed baby was imminent.  Dr. Radzin from the NICU had talked to my husband prior to the surgery to give him some idea of what to expect with Emily.  As soon as Emily was removed from me – the NICU team immediately started working to save her life, all I saw was them wheeling our new daughter out in a glass box I would later learn was called an isolette.  It was just a fleeting glimpse.  They told me Emily was 13 inches long and weighed a pound and a half – 690 grams. The size of a telephone.

I finally got a good look at Emily several hours later.  I was out of the recovery room and they wheeled my bed down to the NICU.  There was Emily- small, red, wizened, eyes fused shut, a tiny, bony bundle of wires.  In  her isolette, untouchable, frightening, frightened.

There are things people take for granted that I always resent.  I know I shouldn’t.  After all, we are one of the lucky ones, our daughter lived.  I know this.  But I also know that selfishly when I see or hear people talk about their pregnancies, or baby showers, or cutting the umbilical cord, or holding their baby for the first time after delivery, or just how cute their babies were when they were born.  I smile and mouth the right words, but inside I feel that tight knot of resentment tinged with sadness.  I’m not proud of it because I have seen parents go through much worse than us, but it’s there nonetheless.

I remember when I was still in the hospital recovering in the maternity ward.  Whenever I would walk back to my room from the NICU, I would have to pass by the room full of healthy babies.  They looked huge, like Sumo wrestlers.

My heart  broke for Emily, seeing her in her isolette.  Ventilation tube down her throat, taped to stay in.  PIC line, feeding tube, IV lines, electrodes, monitoring equipment, lights, beeping, buzzing.  All the things needed to keep her alive, but so far removed from the gentle arms of a mother. I always felt guilty at not being able to carry her to term – I still do.  I used to wonder if she could feel all the discomfort, the pain, after all she couldn’t cry and tell us – the tube was in her throat.  The nurses assured me that she couldn’t, her brain wasn’t fully formed, she couldn’t register it.  I still wonder if it’s something they would just tell a mother to keep her sane.  I still think about it.

There is no feeling more unnatural to a new mother then going home from a hospital without your baby.  I think that’s when it all hit me.  My husband and mother bringing me home.  Emily still in the NICU.  When I walked into the empty house, I lost it.  The numbness was gone, replaced with raw, heart wrenching grief.  I let it out.  Then it was time to get on with it.

It’s hard to describe the 131 days that Emily spent in the hospital.  But it soon became our new normal.  As normal as the roller coaster ride of prematurity can ever be.  Initially, we couldn’t even touch Emily.  Her skin wasn’t fully formed, so it could tear easily.  The isolette she was in was humidified for that reason.   So we would sit there, hoping to add some comfort just through our presence.  Emily couldn’t feel us or see us (her eyes were still fused shut), maybe she could hear us.

This was when we started to get to know the Howard County NICU team, Emily’s doctors, nurses and the respiratory technicians that would come by to ensure the ventilator was working as it should.  They were kind to us.  We must have looked like deer in the headlights when we first got there.  Shell shocked and not sure what to do.  I know this because I later saw it myself.  As we became the seasoned veterans of the NICU, rookie NICU parents always had that look too.

To read the rest of Emily's story visit http://www.hocowellandwise.org