Having a new baby is a wonderful experience. However, having a premature baby with critical medical issues, traveling through two hospital systems from out state Nebraska, and ending up relocating to another city to meet the needs of the newborn, puts a new twist on the phrase “You’ve come a long way baby.”
As the NICU nurse case manager for Sara, who was 23 weeks gestation at birth, there were many ups and downs for the parents. There were times when many staff and parents wondered if they would leave the hospital with their baby. Sara seemed to have complications that effected all her major organs, including respiratory distress syndrome and subsequent broncho-pulmonary dysplasia that required a tracheostomy, necrotizing enterocolitis and perforation with a fistula, retinopathy of prematurity; a pda requiring ligation, hyperbilirubinemia from long-term hyperalimentation, metabolic bone disease from aggressive diuretics; an IVH with resulting hydrocephalus requiring shunting, and, finally, pulmonary hypertension that complicated the process to wean the ventilator.
This list reads like a medical encyclopedia. However, my proudest moment was being able to work with Sara’s mom to coordinate with our team of nurses, social workers, physicians, developmental specialist, rehab and respiratory therapists, home health providers, payer and community programs to educate and develop a plan to get “home.” Her discharge needs were extensive having a trach, monitors, oxygen, suctioning, g-tube continuous feedings, numerous medications and multiple follow up appointments.
Going home meant to an apartment in our metropolitan area. As is often the case, the complex medical needs and required medical follow-up made the original rural location unsafe. The family needed to re-locate, sell their old home, look for new jobs, and develop entirely new supports.
Being in the metropolitan area provided closer medical supports but did not totally eliminate the lack of private duty and respite staff available in this area. Coordination with a local complex need daycare and home health company was arranged to provide some assistance.
Sara’s medical needs remain complex. She has had multiple re-hospitalizations and now requires constant ventilation. The fragile nature of her condition lends itself to difficult times as her needs have increased. Sara’s mother, however, has stated over the course of her nine month stay, the NICU had become her family and friends. When hospitalized she does not return to our unit.
What I see is a mom who grew as a person and an advocate for her daughter. I am proud to be just one of many to help make that happen.
Nursing case management continues to play a role for Sara and her family upon re-admissions. The family resides in an apartment and adjusts to Sara’s need. Dad got a new job and stays local. They utilize private duty as available and are excited to be “ home” with Sara.
