The monitors beeped and the soft whir of the air conditioner hummed in my ear as I pulled fresh gastric tubing out of the hospital packaging. I opened the can of pediatric formula and grimaced as the smell of the iron-fortified liquid hit my nose. As I filled the gastric tube pouch, I looked over at my tiny patient.
And she rewarded me with the same toothless grin she’d been giving the staff for the last year.
Katie* had been born with Down’s Syndrome and a significant heart defect. Very early in her infancy, she underwent the first of many procedures to repair her tiny heart. Complication after complication gave rise to long hospital admissions, often months at a time.
Katie and her family were frequent patients on our busy pediatric cardiac ICU floor. Her room was the one closest to the nurse’s station, and she was a staff favorite — her smile could light up a room, despite the difficult medical challenges she faced.
I met Katie in the summer between my junior and senior years of nursing school. I had landed a prestigious position as a nurse extern where I would be paired with an experienced ICU registered nurse so I could learn the intricacies of intensive care nursing. Because I wasn’t yet licensed, my responsibilities were limited to changing bed linens, stocking supplies, holding and hugging infants; and very basic nursing tasks, like refilling gastric tube bags. Hugs are so powerful for these babies. They can keep a baby’s heart beating at a normal rate, improve sleep and even support healthy weight gain.
That is how I found myself in Katie’s room, delighting in the smile given to me by a baby who often didn’t have a reason to smile.
And yet, she did.
During my first week on the job, as I prepared to change the linens in Katie’s room, one of the nurses looked at me and raised an eyebrow. “Katie’s mother likes things ‘just so’ in there. Make sure you arrange the room the way she’s requested or you’ll hear about it.”
I entered the room to find a well organized room and precisely arranged supplies. I wondered about Katie’s mother. Why did she care where the Huggies diapers were stacked or where the wipes were placed?
I got my answer a few weeks later when Katie’s mom came to the unit during one of my shifts.
As I visited with Katie’s mom, she looked at me and said sadly, “You are new here. I’m sure you’ve heard about my difficult reputation by now, huh?” As I stammered to find an answer, Katie’s mother kept talking.
She told me that, since Katie’s birth, nothing had gone according to plan. She didn’t expect to have an infant with Down’s Syndrome and a heart defect. She didn’t expect that she’d have to leave her infant in the comfort of strangers so she could tend to her other children and husband. She told me she didn’t expect how hard it would be to try to keep her job as a teacher, all the while thinking of questions she needed to ask Katie’s team or wondering if her baby felt scared or lonely.
“I can’t control anything. But, I can control how her room looks. That’s all I can do for her right now.” She pointed wistfully at a stuffed elephant, jauntily positioned where Katie could see it easily.
“I bought that elephant the day I found out I was pregnant with Katie.”
It was then that I realized the crushing weight that parents of children in ICU carry. As I sat with Katie’s mom that summer, I saw the longing she felt when she knew it was time to go home but she just wanted to hug Katie a little longer as she slept.
I saw the tears of frustration when lab tests indicated that Katie would need more antibiotics, more surgeries and more treatments. I saw the joy of a family reunited on a Sunday afternoon as the whole group would gather for a few precious hours.
And I saw the looks of gratitude she gave me when she’d walk in the room and find me holding Katie. “You are here when I can’t be,” she’d tell me. She would leave gifts of donuts or coffee for us and, though she was always particular about Katie’s room, her message was clear: we were mothering her baby when she could not and her heart was full of gratitude for the nurses who helped her family during such a difficult time.
Through it all, Katie smiled. And I adored my time with her. As I rocked her before bed, I wondered if she’d ever know how much joy her smile brought the world. As I changed her diaper and made silly faces to make Katie giggle, I’d say a silent prayer for her mother, knowing how desperately she wanted to be the one chasing her infant’s giggles and hugging her close. And, on my last day of work that summer, I cried as I inhaled her scent one more time and took in her sweet grin.
Katie’s smile had changed my heart.
I went on to finish nursing school and while I had spent four long years memorizing drug names, clinical pathways and disease pathology, it was a little girl named Katie who taught me that the smallest acts, the tiniest hugs, make all the difference — that the best care I could ever render as a nurse was simply being there to hug a child when their family couldn’t.
Hospitals across the country have hugging programs providing babies in their care the hugs they need around the clock. To ensure all babies get the hugs they need, the Huggies brand through their No Baby Unhugged program is awarding $10,000 grants to 25 eligible hospitals throughout 2017 to enable them to launch a new hugging program or expand support for an existing program.
Want to support hospital hugging programs? Become a Huggies member by signing up at Huggies.com/NoBabyUnhugged and Huggies will donate $5 to No Baby Unhugged hospital grants.
Huggies – the fastest growing diaper brand in U.S. hospitals – believes deeply in the Power ofHugs, which is why every diaper and wipe is inspired by a parent’s embrace. The Huggies No Baby Unhugged program helps ensure all babies get the hugs they need to thrive by supporting hugging programs in hospitals and donating diapers across the country. Learn how you can help at Huggies.com.
*Katie is not the patient’s real name.