Why We Walk Wednesday! Paige and Jackson

Like you, we did not prepare for this. You can never really prepare yourself for this…..the loss of a normal pregnancy, the birth of a premature baby and the long days of care they are going to require. The emotions that come with a premature birth are sometimes indescribable to the inexperienced and are certainly at times unbearable for those that do experience them.  You see and hear all the normal rhythms of a normal pregnancy and childbirth playing out all around you. You feel isolated and alone as you see and hear the other families celebrate their new “bundle of joy”.

We went through and felt all those things. Sometimes we still do. Two years later. We did have joyous, “normal” moments during our pregnancy.  Then, after being hospitalized for five days at 24 weeks gestation with pre-term labor, there was a last-minute, unplanned baby shower.

But on Monday September 17, at 25 weeks, we went in for a follow-up ultrasound. The ultrasound tech was not smiling as she had before. We were immediately admitted and stayed in the hospital for the next 12 days. Agonizingly watching contractions on a monitor and praying and hoping that we could somehow stop what seemed to be an inevitable, early conclusion. On September 29^th, we were transferred here, to Franklin Square, because it seemed we weren’t going to be able to forestall the now unavoidable early delivery.

My wife and I are in the medical field and work as respiratory therapists. We knew all the statistics and outcomes but that knowledge and familiarity did not lessen the blow or fear. When the doctor came into the room and delivered the news that these babies were coming and there were no more options to delay, there was a feeling of panic and fear and denial. We hadn’t even picked names.

Paige Emerson and Jackson Phillip were born in the early hours of September 30, 2012 at 27 weeks gestation. Paige weighed two pounds two ounces; Jackson two pounds. I still remember the pin-drop silence in the operating room. It is a mixed-emotion, bittersweet moment. My wife, laying on the operating room table, just kept looking up at me and asking if they were OK. I could only say they were doing all they could. Paige and Jackson were taken to the NICU and away we went on the proverbial roller coaster.

Some people will tell you as you sit vigil at your baby’s isolette or crib that “everything will be OK”. It is hard to accept. It is the furthest thing from OK. Not right now. Being in the NICU is scary and hard and noisy and overwhelming. Life outside doesn’t seem to exist. We dealt with news of brain bleeds. Holes in hearts. Lungs that weren’t working. Infections. Ventilators. Tubes. IV’s. Apneas. Bradys. Lights.

The first couple weeks were the most difficult. While Paige and Jackson were hooked to equipment and were fighting hard and struggling we watched other babies come and go. But immediately, with the help of the doctors, nurses, RTs, family and friends we were able to somehow insulate and internalize all those emotions and hold and comfort and provide all the care that we could for Paige and Jackson. Those times were so special.  Day after day went by. We ate dinner in the hospital every night. My older children did homework in the hospital every night. We resolved that we were NOT leaving this hospital without our babies. And then something happened. As I reflect, I can’t pinpoint the exact day or moment, but the darkness that seemed to cast a shadow over everything started to illuminate. We celebrated things you never imagined you would, but things that were perfectly appropriate in our new world.  The 3, 4 and 5 pound club. Wearing clothes for the first time. Coming out of an isolette, affectionately referred to as their little house.  We cheered the simple acts of breathing. We held them skin-to-skin with joy and not with fear. We eventually even heard them break their silence and cry for the first time. We realized that our babies had a fight in them that was so far beyond their size. Each day that passed shed more and more light. I remember vividly a day when a next-door NICU mom who was getting ready to leave with her baby leaned over and said “your day will come”. It’s obvious to me now that she had come through the darkness and into the light. 121 days passed since we went to that ultrasound, 108 days since Paige and Jackson had come to meet us. It felt like a lifetime. We went to that ultrasound wearing shorts and short-sleeves. And then the leaves had changed colors. Halloween had come. Thanksgiving had come. Christmas and New year’s had come. And then finally Paige and Jackson’s day had come. They came home. All bundled up in the middle of winter. It was a strangely surreal experience. We had reluctantly driven away from the hospital every day for 107 days without a huge piece of our heart that laid behind in the NICU. But then we didn’t. In the van, we looked behind us to where Paige and Jackson now laid with us. We turned back around and cried an indescribable cry and nothing held us back. 

I tell people it was the hardest thing I have ever done. It still is. But you will derive strength from places and people unknown to you prior. Many times and mostly from that little baby that has a fight and strength you will hear called “a preemie fight”. Its like no other. Your day will come.