A Fighting Chance at 24 Weeks: Sloan's Story
April 27, 2023
Most babies weigh just one pound and are roughly the size of an eggplant when they reach 24 weeks of development inside the womb. It is a crucial stage when internal organs begin functioning, and the babies' respiratory and central nervous systems are still developing.
So, in November 2021 when Kallie Johnson experienced a premature rupture of amniotic fluid around this point in her pregnancy, her care team in Winnemucca decided to transport her via Care Flight to Renown Regional Medical Center. The team at Renown Children’s Hospital immediately began discussing the risks of delivering at 24 weeks with the Johnson family.
Moving Forward with Hope
Knowing the stakes, Kallie remembers never feeling rushed to decide about delivering her baby preterm. “I felt educated and supported by my care team at Renown throughout our entire stay, starting with the education they provided about what it meant to deliver my baby early,” Kallie said. “The team really helped me make the best decision for myself and my family.”
Together, Renown employees and the Johnson family moved forward with a healthy set of nerves and a powerful feeling of hope.
Weighing in at one pound 11 ounces, Sloan entered the world on Nov. 19, 2021, via emergency Cesarean section. Her birth was classified as a micro preemie because she was born before week 26 of pregnancy and so small that she fit inside the palm of her father Sterling’s hand. A full-term pregnancy is classified as reaching 39 weeks.
A Fighting Chance
Called a fighter by many Renown Children’s Hospital care team members, Sloan spent over five months in the neonatal intensive care unit (NICU). She was placed on a ventilator, fed through a feeding tube and monitored 24/7, overcoming daily challenges with the Renown team and her family.
As a result of being born prematurely, Sloan developed a grade one brain bleed and a congenital heart defect called patent ductus arteriosus, a persistent opening between two major blood vessels, causing too much blood to flow to the lungs and heart.
To meet the oxygen needs of her tiny lungs, Sloan was intubated and developed a severe oral aversion and high-arched palate as a result. The effects would lead to difficult developmental and physical challenges that she still conquers today. Yet, with the help of her care team – including physical, occupational and speech therapists, dieticians and doctors – Sloan continues to make progress every day.
Finding Comfort in Sloan’s Care
The Johnsons lived in Winnemucca, over two hours away from Renown Children’s Hospital, which posed a significant challenge for the family. They had a 12-year-old son who was in the middle of his school year at the time, and Sloan needed constant care at Renown Children’s Hospital. Occasionally being away from Sloan was hard, but their worries were eased knowing the care team she had supporting her. The staff sang to Sloan, held her while charting and took deliberate steps to make her feel comfortable, cared for and loved while the Johnson family could not be by her side.
The Johnson family fondly remembers the first time Sloan ever set forth outside, catching her first ray of sunshine in the John & Sue Dermody Children’s Healing Garden alongside the team who went above and beyond to make her life possible.
"The staff at Renown were our pillars when we couldn't be there for Sloan," Kallie said.
Sloan made friends everywhere she went at Renown Regional. Members of the nursing and environmental services teams cheered as she grew and developed right in front of their eyes. On the day she was presented with a 100-day crown by the Renown team, anyone who was not tasked with caring for patients was by Sloan's side, celebrating her life as she reached an important milestone in her NICU care.
Sloan Today and A Bright Future Ahead
Sloan was in the NICU for 160 days, and her journey of determination did not stop when she left Renown Children's Hospital. After being discharged, the first thing Sloan did was head to her older brother's baseball game with her parents.
One year out of the NICU, she is still tube fed and recently just conquered her need for nighttime oxygen after 350 days of low-flow oxygen therapy. Still, one thing remains certain – Sloan is a fighter, and none of this stops the Johnson family from living with their little wonder, who especially enjoys the outdoors and hiking with Mom.
Today, the Johnson family lives in Fallon but frequently travels to Reno for Sloan's appointments. They stay connected with many of the Renown team members who stood as pillars of hope during Sloan's NICU days, sending photos and texts to stay in touch.
Lauren Draper, Supervisor of Clinical Nursing at Renown Children's Hospital and primary nurse to Sloan said, "With micro preemies like Sloan, the Renown team has a little more time to bond with the babies and their families. We cry together, we bond together and we celebrate every milestone together. One of the most exciting things to see today is Sloan's big eyes taking in the world around her."
A Hand in Advocacy and Education
In the depths of her grief over a pregnancy cut short as well as charting the waters of a baby in the NICU, Kallie’s appreciation for Renown’s employees could not be overstated. Kallie shared that the care team routinely kept her family updated on Sloan’s condition and provided invaluable resources and tools to help during Sloan’s admission and prepare her for life after discharge.
The interdisciplinary team at Renown Children's Hospital is comprised of respiratory, physical and occupational therapists and lactation consultants who provide family-centered care. From the moment a baby enters the NICU to the journey parents face after discharge, Renown’s team is behind these families every step of the way, cheering them on for success inside and outside the hospital.
Today, Sloan participates in physical, occupational and speech therapies through the Nevada Early Intervention Services (NEIS). These programs through NEIS were recommended by Sloan's dedicated care team members, including Lauren Draper.
When we asked Lauren how crucial programs through NEIS are to a child's success after their care journey ends at Renown, she said, “Resources through NEIS range from physical to speech therapies and beyond and are often discounted or free of charge to our community, even in rural areas. They continue to build upon the hard work we put into all babies after they are discharged from the NICU.”
A Message of Thank You
While the Johnson family cannot possibly thank every individual by name who contributed to Sloan’s development, they have a special place in their hearts for the neonatologists, nurses, respiratory therapists and physical, speech and occupational therapists at Renown who were by Sloan’s side every step of the way.
Emotionally, Kallie and Sterling agreed, “The Renown team is the reason she is here today.” While we know Renown Children’s Hospital played a critical role, it's with hope, determination and the unyielding support of her friends and family that Sloan is the little fighter she is today.