Bob and Susan Selby of Ames would describe life in a Neonatal Intensive Care Unit (NICU) as a true rollercoaster ride. What should be a joyous time in a family’s life is overshadowed by worry, grief and uncertainty.
But the NICU can also be a place of hope. The Selbys, among hundreds of other central Iowa families, received support through a partnership between Mercy Medical Center of Des Moines and Heartland Area Education Agency so that the future didn’t have to be as scary and uncertain.
Like other hospitals, the Mercy’s NICU specializes in treating ill and premature infants. The Selbys were thrown into their NICU experience when their firstborn, Jack, was born at 25 weeks, weighing just 1 lb., 11 oz.
“As with all parents’ experiences in the NICU, ours was confusing and terrifying but full of hope,” Bob and Susan said. “As our journey unfolded, our emotions ran from sheer despair to a feeling that, just maybe, things could turn out positive.”
While the nurses and doctors worked to keep Jack healthy and growing, Kim Thomas, Heartland AEA’s liaison to the NICU, was there to help Bob and Susan plan for Jack’s future.
“I remember specifically the day that Kim came to me to explain a program called Early ACCESS,” Susan said. “She came to me with a smile on her face and explained that the program was through Heartland AEA and was designed to help us continue to make strides as a family once we were at home.”
Early ACCESS is a statewide collaborative program that serves children birth to age 3 to help them make cognitive and developmental progress in line with their peers. Babies referred to the NICU are automatically qualified.
“As an educator, I appreciated that there was support already in place to help us think ahead to Jack’s future,” Susan said. “Even though he was still a tiny baby, it was never too early to think ahead to his future and make plans to help him catch up to his peers. Early ACCESS gave us permission to do that.”
The partnership between Heartland AEA and Mercy provides the opportunity to begin Early ACCESS services at the earliest possible time. Quality early intervention is one of the most effective tools to decrease the educational achievement gap between children who need services and their peers. Depending on the circumstances, some children reach their developmental milestones and discontinue services by the time they reach kindergarten.
With Thomas present at the NICU, it increases the timeliness and efficiency of the referral process as she is able to do initial assessments and communicate with her AEA colleagues who will provide Early ACCESS services for the child in the family home.
“She [Thomas] is that ‘continuum of care,’” Annie Volker, Heartland AEA Early ACCESS Regional Coordinator, said. “She’s able to feel the ebb and flow of what the family needs and serves as a link between the family and the AEA Early ACCESS team. This helps because families spend less time retelling their story — where they were, where they are now and where they want to be — so the team can be more focused on providing the needed services.”
As for the Selbys, a couple years after Jack was born, they had their second son, Tommy, who was born at 28 weeks, weighing 2 lbs., 1 oz. and who also had to be admitted to the NICU.
Both Jack and Tommy needed Early ACCESS services after their discharge from the hospital. AEA consultants visited the Selby home to work with the boys and were able to assist them with meeting gross motor, fine motor and problem-solving goals.
“More importantly, Early ACCESS played a pivotal role in our oldest son’s early childhood education,” Bob and Susan said. “During his three years of early childhood education, he has gone from goals that have had an academic focus to one that is currently a simple fine motor goal which is on the verge of being met. It is our belief that, because of the continuum of support Jack received from Early ACCESS straight from the NICU and throughout his early years, our tiny, one-pound baby is now caught up to his peers.”
Jack is now 6 and attends kindergarten at Ballard Community Schools. Tommy is 3 and loves keeping up with big brother and staying home with Dad. Both boys are happy, healthy and eager to make friends with anyone they meet thanks to the continuum of care they received at Mercy’s NICU and the Early ACCESS services they received through Heartland AEA.