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93 days: a lesson in love, life, and hope

Posted by Kip Durney  November 14, 2013 10:30 PM

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There are sometimes moments in life that change us. And sometimes, there are experiences that alter our essence to such a degree, that everything we've ever thought about the world can change in the blink of an eye.

And it did.

The fact that my girls are now in school is amazing to me considering their humble beginnings. Like many things in life, the beauty is the journey and it’s taken me some time to be able to really accept and process the journey that brought us to where we are today.

When my wife and I first got pregnant, the feeling was nothing less than sheer jubilation and excitement. It was a planned pregnancy and we were ready to take on the challenges of being first-time parents - or so we thought. Our initial experience was text-book – home test, pre-natal vitamins, first doctor appointment to hear the heartbeat, etc… Everything was normal until that one day, that one test, that one technician who said:

“I see you are having twins.”

Gasp.

“What the heck did you just say? Twins? Are you kidding me? Wow!”

Up to that point, we were expecting a single baby. It was shocking to say the least – good shocking, but let me tell you, I almost fell over. Val and I were so excited that we couldn’t stop smiling, giggling, and fumbling our hands. The technician just smiled and was genuinely happy for us. It was absolutely one the most amazing moments of my life. And that’s all it was – a brief moment in time.

Our amazing, life-altering moment came to a screeching halt with, “Something doesn’t look quite right. Let me get the doctor.”

In an instance, that jubilation turned to the most horrifying moment of my life, all in the span of 3 minutes. Little did we know that we were about to embark on the most excruciatingly painful journey of our lives.

When the technician left the exam room to get the doctor, Val and I sat in silence for a moment. There was a frozen image on the monitor of two babies that didn’t look right to the technician, but to us, they were the most amazing and beautiful things we had ever seen. It was a monochrome representation of our future family, our future memories, our future happiness.

How could something so amazingly beautiful NOT be right?

I gulped.

Val gulped.

We held hands and took several deep breaths in a futile attempt to calm ourselves and we sat in silence for what seemed like hours. I’m not sure I’ve ever been that afraid in my life, or at least up to that point. I would soon discover what it was like to truly be afraid of something.

The doctor came in and performed an exam.

“There seems to be an increased nuchal fold on the back of the neck of baby #1.”

And just like that, we were whisked down a hallway to “genetic counseling.” It was there that they explained to us that such a diagnosis or detection can be an indication of Down Syndrome or worse. They dutifully and professionally explained what that meant in great detail, offered a myriad of statistics, and presented our options.

It was so much to take in all in the span of an hour.

Twins, “something’s wrong”, nuchal something or other, baby #1, Down Syndrome, selective reduction.

Did you catch that?

Selective reduction… there are no words.

We sat in that dimly lit office for a long while, alone but together, trying to make sense of it all – an exercise in futility for sure. The joy, exuberance, and hope that we had so enjoyed just a few hours earlier faded away and we were left with the only emotion that made sense – fear.

The fairy tale pregnancy had ended and was replaced with what we slowly began to recognize as one of the crossroads in life when you have to hold on to your seat as if your life depended on it. And in this case, it was the fate our unborn children that lay in the balance.

There was nothing else to do at that moment but cry.

When the team of doctors and counselors returned, they explained to us that “baby #1" was showing indications of an increased (abnormal) nuchal fold and that additional tests would be needed to determine the validity of those findings. The tests were performed immediately and we were told it would take two weeks for the cultures to grow in order to know definitively what was potentially wrong and what our options might include.

We left the office in silence, emotionally exhausted, and overwhelmed.

We didn’t sleep. We didn’t eat. We held our breath for two, long excruciatingly painful weeks.

And then the phone rang.

“Hello?”

“Hello, this is Courtney from Brigham & Women’s Hospital Department of Maternal Fetal Medicine. Is this Kip?”

“Yes, this is Kip. Hi Courtney.”

“I just received the results of the test.”

I sat down. My heart raced and pounded out of my chest. My throat went dry and my fingers trembled. After two weeks of waiting, we finally were about to get the results that either way would change us forever.

I braced myself for the worst. “Ok, and they were?” I asked reluctantly.

“Inconclusive.”

My heart broke.

I hung up the phone, closed my eyes, and sunk my face in my hands.

This cycle repeated for months and after each test, the phone would ring and the results were always the same: inconclusive. Eventually, there was nothing more to do. There were no more tests to offer. There was just no definitive answer.

Selective reduction was NOT an option.

So, life went on with us not knowing if something was in fact, wrong. All we knew was that they couldn’t tell us that something WAS wrong and that was enough for us. We were cautiously optimistic and decided together that there was nothing more that we could do and we were going to be HAPPY about this pregnancy. We were willing to accept the outcome whatever that may be.

We painted their room pink with a green and white border. I even painted the radiator pink. We bought 2 cribs, 2 mattresses, 2 dressers, 2 changing pads, 2 crib sets, and ten million and seven diapers. We registered at Babies ‘R’ Us and used the hand-held scanners to zap away our fears and replace them with images of happy and healthy babies that we saw all over the store. THAT was going to be us. Everything was going to be OK.

Life was good and Val’s belly was growing and she felt the best she’s felt in her life. Her smile was infectious; her contentment and joy was tangible. I had never seen her so happy.

To be safe, we had weekly sonograms. As long as everything remained “inconclusive," there was hope for us, for our babies, and for our anticipated family.

We knew that we had the best medical care available anywhere in the world. The medical team that followed our case was world-renowned. We had to accept that the human body is a remarkable thing and sometimes even the most advanced scientific knowledge and research can’t give you the answer you desperately want.

All checks were in place and the twins were monitored very, very closely for any indication of distress. Everything remained quiet and they continued to grow and display all the normal signs of gestational development. We remained in close contact with the entire medical team throughout the pregnancy and at any sign of concern, it was communicated immediately. We weren’t taking any chances.

Life went on and we became more and more convinced that everything was going to be ok – that if something was really wrong, we’d have known by then. And the doctors assured us that everything was moving along just fine.

I had a trip coming up to Toronto and asked our doctor if there was any reason that I should not go. It was only for a few days and Val was only 27 weeks along (a full term singleton baby delivers at 40 weeks). We were assured that there was no reason at all to cancel my trip. All would be fine.

On the second day of my trip (a Friday), Val called me on her way into work to check in. She said she was feeling just fine but had some very mild discomfort that she was going to talk to the nurse practitioner about when she got to work (she worked at the same hospital). It was no cause for alarm and she would call me later after she talked to her.
Luckily, the NP was able to squeeze her in for an office visit and Val popped on over for a quick check-up. All was fine and there was nothing to worry about. So Val went about her business at work.

Later we were told that Val’s nurse practitioner was leaving work for the day and was walking to her car in the garage when something began to bother her. She couldn’t put her finger on it but she just ‘had a feeling’ that something wasn’t right. She called Val’s cell phone and asked her to go to the ER and get a steroid shot as a precaution (steroid shots are often given to patients in jeopardy of pre-term birth to help boost lung development which is one of the last organs to develop in a baby). This was just as a precaution.

Val called to tell me and I became very uncomfortable. But the doctors assured me that there was no reason to return and that “there will be no babies born today.” Regardless, I planned to leave the next morning on the first flight out as it was already 4pm and getting a flight out now would be difficult. Plus the doctor was sure that all this was a precaution.

Val sounded fine and didn’t seem overly concerned. I told her that I was going to look at flights and try to come home in the morning. I told her to call me when she got home so I knew she was ok.

One hour later, 5pm, my cell phone rang from a frantic mother-in-law:

“Kip, Val is having an emergency c-section right now!!”

Time stopped.

My heart jumped out of my chest.

Tears rolled down my face.

“I’m on my way.”

The ensuing hours passed ever so slowly. My worst nightmare was unfolding before me and I knew at that very moment, my life was altered forever. True fear is an awareness of a complete lack of control and when it makes an appearance it is never quite what we expect.

In fact, it’s worse.

It was a solid 40 minute drive to the airport. I sat in the back of the cab shaking and bobbing my head back and forth. I can’t imagine what was going through the mind of my driver. He said not a single word the entire ride. My body was so overloaded with emotion that I honestly thought I may have a heart attack.

I stared out the side window of the car as we rolled down the freeway in a country and city with which I was not familiar. I had never felt more alone. Tears rolled down my face incessantly and as I fumbled for my cell phone and tried to dial, I couldn’t. My hands were shaking and I knew that once I made that call, I would get 1 of 2 answers, the first being that everything was OK. But if that wasn’t going to be the answer, I didn’t want to make the call. So for a short few minutes, I sat there, I stared out the window and tried to pull myself together.

Oddly enough, it was during those few moments of horrific contemplation, that everything suddenly made sense. For the first time in my life, I knew what I wanted with unambiguous clarity and focus. My mind slowed, the external world clouded, and all I could see was Val laughing, happy and smiling back at me.

My fingers dialed, I trembled, and tried to speak to the person on the other end. After a series of transfers, a woman with a soft and gentle, but scared voice came on the line.

“Kip?”

“Yes… “ That’s all I could get out.

She told me her name but I don’t remember what she said. She very briefly told me what had happened and that she was the nurse that was taking care of Val before all hell broke loose. She asked me if I was ok but I couldn’t physically answer. All I cared about was if Val was ok and somehow I was able to ask.

“She was stable the last time I saw her before they took her to the O.R. That’s all I know.”

I don’t think I ever knew how much I loved my wife until that very moment. You read about those moments of clarity that others have had during disasters, near-death experiences, intense moments of stress, and the like, but you never really understand it until it taps you on the shoulder or in this case, punches you in the face. I’m not sure if it was the most painful or beautiful feeling I’ve ever experienced. But for me, those two lines blurred into a single moment of intense and clarified vision of what was important in my life.

I don’t remember paying the driver, walking through the airport, going through security, customs, or the flight itself. I remember making at least one phone call to my mother in Florida to let her know what was happening but I couldn’t speak very much. She kept asking me what was wrong and I could only offer a few words at a time. The call was short and when we hung up, I was alone again about to board a plane en route to my worst nightmare.

I was most certainly in shock. When I arrived at Logan in Boston, I remember walking very briskly to baggage claim. I started to run, but stopped as I started shaking again. I didn’t know what I was going to find at the hospital. I didn’t know if I had lost my wife. I didn’t know if I had lost my first child – and twins at that. What if we lost the girls? What if I lost Val? Both? Every conceivable outcome flashed through my mind. I was not in control. My physical body took over and somehow it got me into a cab and to the hospital.

It must have been around 9 or 9:30pm. The lobby was eerily quiet for such a busy hospital even though it was a Friday night. I approached the security desk, mumbled something and was quickly escorted across the dimly lit expanse of a lobby, down a corridor to a set of elevators and up to what was to become our home for the next 93 days.

I walked into a room. And there she was – awake, groggy but talking, and alive.

What happened?

For reasons nobody still understands, the umbilical cord from one of the twins had ruptured from the placenta and Val was bleeding out. In a sheer twist of good fate, Val happened to already be at the hospital, happened to already have an I.V., and it happened to be during a shift change so there were double the number of clinicians that would have normally been on service. Val was losing blood and both babies were obviously in severe distress not only due to the fact they were only 27 ½ weeks, but were also losing blood.

There was no time. For the team, the primary focus was Val.

They performed an emergency c-section in what was later described to me as simply a scene of “controlled chaos” amid an enormously stressful situation even for the highly experienced staff. There were 20-30 doctors and nurses in the room that day at one of the best hospitals in the world and with one of the best and most advanced level 3 NICUs in the country.

The girls were literally yanked from Val’s body, 3 months too soon, and were immediately given life support measures. Their APGAR scores were 0 and 1 and weighed in at 1lb/15oz and 2lbs/2oz. Their umbilical cords were empty. Endless units of blood were tossed from one side of the room to the other and were quite literally squeezed into their lifeless bodies… until their tiny hearts began to beat again.

Several hours later, a doctor came in to check on Val. She told us that she had no doubt that Val would continue to heal and that she would recover well. And she told us that if Val had been home when this all happened, or even if she had been at the hospital but not already in a trauma room with an I.V., this may have been a different conversation.

We were grateful, but all we wanted to know was what was happening with the girls?

Val had waited for me to get to the hospital before going to see them: a gesture in kindness for which I will forever be grateful. Together we went to the NICU for the first time as parents to see the two tiny miracles that had just been subjected to the most violent, traumatic, and death-defying birth one can imagine.

We were both in a trance and could only stay for a few minutes but we were able to see them, touch their tiny hands, and let them hear our voices from behind a plastic window. Again, the lines of horror and beauty blurred.

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The doctor told us that Ava was holding on but that he “feared for little Zoe” and that he was not confident that she would make it through the night – that we should prepare ourselves.

I can’t find the words to describe that feeling. How is it possible to feel such paralyzing fear and pain and love, simultaneously, for someone you only met minutes before?

The next day, the sun rose after a sleepless night and the same doctor came in and sat on the bed.

“She’s still holding on.”

It was day one of what would be a 93 day residency at the Brigham & Women’s Hospital NICU. 93 days of utter pain, joy, horror, hope, and love. It would be a long time before we were even able to hold our girls but once we did, we’ve never let go. There were ups and downs, surgeries and therapies, scary drugs and scarier alternatives, tubes and wires, IVs, needles, and recurring bad news. Sleepless nights, lost appetites, and perpetual tears were the norm. We were numb.

But eventually the positives began to outweigh the negatives and gradually, every so slowly, they began to thrive and grow stronger with every labored breath as they so bravely and intently crawled their way back to life.

I’m not sure how we got through it all, but we did.

Finally, on Christmas Eve, Ava & Zoe came home together. It was our first holiday, our first day, as a family.

Several years later, they have never been apart, are best friends, and although we do have our challenges still, they are thriving beyond all expectations. They are the tallest kids in their class, are smart, funny as hell, and simply beautiful. And to add to the mix they have since been joined by their little brother Connor (also a 15 day graduate of the BWH NICU).

Together, they remind us what is important in life. And while having 3 small kids at home often tests our collective powers of patience and tolerance, we strive everyday to be the best parents that we can be and share with them our experience, strength and hope.

But that again blurs the lines between beauty and fear.

And that’s how I know, it will be OK.

Sunday, November 17th is World Prematurity Day which aims to raise awareness about the issue of premature birth all over the world. Each year, 15 million babies are born prematurely and over a million die as a result. Those that survive are often faced with lifelong health problems including developmental delays and cerebral palsy.

Video courtesy of the March of Dimes

World Prematurity Day

For more information: facebook.com/WorldPrematurityDay

Kip can be reached at kip@tubalub.com or on Twitter @kipdurney

Excerpts from this post previously published on the blog tubalub.com

This blog is not written or edited by Boston.com or the Boston Globe.
The author is solely responsible for the content.

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About Tubalub

Tubalub is written by Kip Durney who lives on the North Shore of Boston with his wife, three kids (including identical twin girls), and a very excitable yellow lab. When More »
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