Henry's Hike to Healing
Nikki Toth and her husband, Steve, of Fayetteville, Ark., were ecstatic to learn that they were expecting their second child to join their daughter, An Na. This time, they would welcome a baby boy who they would name Henry.
Nikki’s pregnancy was progressing normally, until she went into spontaneous preterm labor at week 26. “The doctors were able to hold off delivery for two days,” recalls Nikki, “but eventually made the determination to have me transported from our local hospital, Washington Regional Medical Center, to UAMS (the University of Arkansas for Medical Sciences), where Henry was born the next day.”
Weighing only 1 lb., 13.5 oz., Henry developed a blood clot in his arm that threatened his hand and fingers. Because of the clot and his fragile medical state, Henry was transferred to the Neonatal Intensive Care Unit (NICU) at Arkansas Children's Hospital.
Henry on the day he was born, weighing only 1 lb., 13.5 oz.
ACH NICU nurses gently check baby Henry's condition.
“It is so difficult to describe what it’s like to have a newborn in the NICU,” says Nikki. “It’s so surreal for so many reasons. First, this tiny little baby shouldn’t even be outside of your womb, so that in and of itself is such a difficult thing to process. Second, while it is heartbreaking to walk out of the hospital doors every night and leave your baby there, you can’t imagine actually being able to take care of him anyway, so it’s unlike having an older child in the hospital. You’ve never actually cared for this newborn on your own – and his care needs are so incredibly large and complex; there’s something very unexplainable about it all.”
During this challenging, often confusing time for Nikki, she took comfort in the care that the ACH NICU staff provided not just to her son, but to her and her family: “The nursing staff in the NICU did their very best to include us in every possible opportunity to bond with and care for our baby. They made sure we knew daily that our presence was so very important to the well-being of our baby.”
Nikki remembers fondly the NICU nurses who still have a place in her heart. She says, “Ellen (Mallard) had a huge hand in how well Henry did during his time in the NICU. Ellen’s compassionate, yet very competent and wise care of Henry was incredible.”
Says Nikki of NICU nurse, Ellen Mallard, “She was so in tune with not only my son’s needs, but also mine!”
“One moment with Ellen that I’ll probably never forget was after we learned that Henry was aspirating during breastfeeding and the determination was made to stop breastfeeding (and give pumped, thickened breast milk via bottle). After returning to his bedside from radiology, I was quietly sitting and holding him…and crying. Ellen, again, knowing how much I wanted to breastfeed my baby, silently brought me a box of Kleenex and patted my arm and left me alone with my baby. She was so in tune with not only my son’s needs, but also mine!”
Nikki also sings the praises of their neonatologist, Dr. Ashley Ross. “He acted as though he had nowhere else in the world to be and answered every question we had thoroughly, honestly and compassionately.”
Dr. Ross explains, “My journey as a neonatologist began with my own children as patients in a neonatal intensive care unit. Every parent’s experience in the NICU is unique but common threads of fear and the unknown create a bond. For me, providing intensive care for babies and their families is more than a job. Deeply rooted in my experience as a NICU parent and informed through my training, I passionately advocate for the NICU family through their journey and try to turn that fear and unknown into hope.”
Henry got to come home the day after his due date, and the day after Christmas!
After almost three months in the ACH NICU, Henry got to go home Dec. 26, the day after his due date! While it was exciting for the Toths to get to bring their precious boy home, it was also a bit overwhelming. “It was scary to leave the NICU! Henry had chronic lung disease and came home on oxygen that he needed 24/7. The staff did all they could to prepare us, but there was still so much fear about finally being the ones to take care of him ourselves. There was relief, also, of course. And joy! So many emotions all at once. I’ll never forget walking him out of those front doors for the first time.”
Henry would enter the doors of ACH once again when he was one year old after suffering respiratory failure and pneumonia. Henry was treated in the Pediatric Intensive Care Unit (PICU) for two weeks, then in a step-down unit for another two weeks when his condition improved. “It was an extremely scary time,” recalls Nikki. “If felt completely different because he’d been home with us for a year, and suddenly, he was sedated and on a ventilator all over again. We were thankful to be allowed to stay with him in the PICU, so at least one of us could be with him at all times.”
Just look at that sweet smile! Henry, 4 years old in this picture, is elated to get his feeding tube taken out.
After four scary weeks being treated for his respiratory issues, Henry was able to go home once again, and the Toths have since welcomed a third child, Samantha, who is almost 2. “Henry is doing so well now,” says Nikki. “He has had a hard road, including approximately 18 months on oxygen and 3.5 years with a feeding tube, but he is now a very healthy boy with a great appetite!”
“He still receives therapies several hours a week due to general developmental delays because of his prematurity, but he is making good progress. He starts kindergarten in the fall and we are thrilled! He loves his sisters, loves to play outside and ‘work’ in the garage with his ‘baba’ (our family name for daddy). He has the biggest, sweetest hugs you’ve ever felt and tells a great knock-knock joke…literally, one. Over and over,” Nikki says with a smile.
“I would tell another mom that her child is in great hands. It is so difficult to give over that control and trust anyone else with your baby, but please know that the staff at ACH is excellent and has your baby’s well-being at the top of their minds and hearts.”
Asked what advice she would offer other mothers whose newborns are facing a stay in the NICU, Nikki offers this: “I would tell another mom that her child is in great hands. It is so difficult to give over that control and trust anyone else with your baby, but please know that the staff at ACH is excellent and has your baby’s well-being at the top of their minds and hearts.”
She continues, “Know there is hope! We went through so many scary moments during Henry’s early months in the NICU (and early years in general) and couldn’t imagine being where we are now, living a wonderful life with our sweet, funny, healthy boy and his sisters!”
Henry is gearing up for one of his favorite activities, hiking!