All Children's Hospital Telethon

Juniper



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The best people to tell a child’s story are the parents themselves— especially when they both write for a living. That’s the case with Juniper, a spunky one- year-old whose survival was in question from the moment she was born. What follows is excerpted from a letter Juniper’s parents wrote, nominating NICU nurse Tracy Hullett for monthly awards at All Children’s Hospital.

Our sincere thanks to Tom and Kelley French for allowing us to share Juniper’s story in their own words.

Juniper

During our daughter’s six months in All Children’s Hospital Neonatal Intensive Care Unit (NICU), an army watched over her. From the day she was born and wheeled upstairs to the sixth floor, weighing 570 grams (one pound, four ounces), she and her parents were in the hands of dozens of excellent nurses, respiratory techs, lactation consultants, nurse practitioners, PCAs, neonatologists, surgeons and specialists. To all of you, we owe more than we can say.

But anyone who wandered near her darkened room over the months will understand why we feel a special debt of gratitude to Tracy Hullett. We would like to nominate Tracy for the Daisy Award and for Employee of the Month, because without her, our daughter would not be alive today.

When we asked Tracy to be our primary nurse, she hesitated at first. We didn’t yet understand how long our daughter’s odds were, or how difficult the months ahead would be. Tracy did. After just 23 weeks of pregnancy, we were tossed into a situation we could not comprehend. Tracy joined us for what turned out to be the worst days of our lives, and also the best.

We have a video of our daughter in one of her first days of life. In it, Tracy’s hands are delicately unwrapping tape from her skinny, fragile ankle. Our baby’s skin is still nearly translucent, and she still looks more like a plucked chicken than an infant. You can see her heart beating under her skin. In the video, Tracy is steady and meticulous. She has the same calm approach that we would come to count on every time she started an IV in our girl’s impossibly tiny and squiggly veins, every time she removed a dressing and tried to leave the skin in place. It wasn’t one heroic act that gave us such faith in her. It was a thousand everyday things. How she cut down the smallest diapers so they would fit better. How she arranged the blankets just so and put our daughter snugly to sleep. Tracy made the smallest bow you can imagine out of gauze and stuck it to our daughter’s head with KY Jelly. It showed that she saw her as not just a patient, but a little girl.

Over the months our baby got bigger, but sicker. She had multiple intestinal perforations, four abdominal drains, surgery, chest tubes, blood clots, retinopathy of prematurity, fragile bones, faltering blood pressure and chylothorax, twice. She regularly turned gray and went limp in the bed. She swelled with fluid until she couldn’t move or open her eyes. We came in one day and Tracy had put her in a dress. Not just any dress, but a black and white number with a hot pink tutu and matching headband. It was a dress made for a Chihuahua, but it was one in a series of Tracy’s small gestures that made the tiny, scary, foreign creature in the incubator recognizable as our daughter.

When things were at their worst, we dreaded Tracy’s days off. Not because the other nurses weren’t wonderful, but because Tracy knew our baby and knew us, and we depended on her to set our emotional compass. She prepared us for the possibility that our daughter would not come home, that she would come home on oxygen, monitors or a feeding tube, that she would have more surgeries and any number of lifelong disabilities. On the day we most feared our daughter would die, Tracy walked with us to the operating room and told us to give our baby a kiss on her forehead. We had never kissed her before. It was a gift that sustained us through the terrible hours that followed.

When we made it to Mother’s Day, Tracy made a little “Mom” tattoo out of tape and put it on our baby’s shoulder. You have no idea how that feels when your status as a mom is so much in suspense. When our daughter was two months old, Tracy traded days off so her father could hold her on Father’s Day. Later that day she dressed her in a Harry Potter robe—a robe Tracy had made herself, complete with blue sneakers and tiny broomstick. Using tape again, Tracy had made a lightning bolt scar on Juniper’s forehead, just like Harry Potter’s. In the books, the scar marks a baby who has escaped death through an act of love.

Some of this might sound trivial— Harry Potter and Chihuahua dresses. But it’s hard to describe how shocking it is to meet your child when they are months from being ready for birth. We have heard how some parents can’t bring themselves to engage with their babies until they are older, plumper, more baby-like. Tracy was a big part of helping us understand that it was not too early for us to put our hands on her, to be her parents, to take the colossal risk of connecting with her. And that we were not doing it alone.

On Oct. 25, her 196th day in the unit, Tracy came in on her day off and walked us—the three of us—out into the sun. We joked that the baby wouldn’t know which of us was her mother until we got to the car. We all cried, and in the weeks since, we’ve cried a number of times thinking about Tracy and what she did for our daughter. We did not understand until recently the risk that Tracy took when she agreed to be our primary, that she was signing on to love wholeheartedly a little girl who would one day leave her, and who might not even live. We only knew we felt safer with her there, and we think our daughter felt safer too.

As we write this, our daughter is sleeping in her bassinet, with no monitors, oxygen, tubes or wires of any kind. She weighs more than nine pounds. She coos and gurgles at us, and grabs at her toys with her newly chubby fingers. The improbability of her is staggering.

She made it six and a half months in the NICU without ever getting an infection, or even a diaper rash. We know that during those long months a great number of people stepped in at one time or another and made a critical difference. But the first one whose photo we framed and put in the nursery is Tracy Hullett. We tell our daughter to grow strong and behave herself, because Tracy is still watching.

 



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