As Francennett celebrates her first Mother’s Day, she looks back on the past 11 months in awe of her twin boys and overwhelmed with emotions about all they have endured and their continued strength and resiliency. Her own emotions and strength have also been tested. She credits the staff and fellow families in the Neonatal Intensive Care Unit (NICU) at Lurie Children’s for giving her the support and comfort she’s needed during a challenging time.
Born prematurely at 25 weeks and 5 days, Damian and Xavier were transferred from Prentice Women’s Hospital to Lurie Children’s NICU where they both experienced a series of setbacks before soaring as Francennett shares. “Damian was diagnosed with short gut and underwent surgery to close multiple holes in his intestines. For several months after the surgery, his intestines had to remain extended in a bag outside of his body. It was touch and go for many months. His lungs were competing with his intestines and his body was swollen with fluid,” recalled Francennett.
“Xavier was born with a large PDA, a large gap in his heart that was causing blood to shunt backward from his heart and preventing oxygen from circulating properly. Consequently, he would need over 100% of help oxygenating and even then, it was hard to keep his heart rate and oxygen levels high enough for survival. Therefore, he had a procedure that places a ‘plug’ in the gap that was instantly beneficial.”
During the 10 months the boys were in the NICU, Francennett spent every single day and many nights with them - many sleepless. “The greatest choice I made was to deliver at Prentice. I live an hour and a half away and knew I wanted to be there because of the quality of both Prentice and Lurie Children’s. I’m so lucky I did because I ended up needing the expertise from both hospitals,” said Francennett. “I don’t know where I would be today if it weren’t for everyone’s support and help from the NICU, physicians, nurses, APNs, care coordinators, child life- everyone. They made me feel like we were in the best possible place.”
Lurie Children’s Division of Neonatology, nationally ranked by U.S. News, provides the highest level of care to the most critically ill newborns in the region. The NICU is a Level III facility, which is the highest designation in Illinois for the level of specialized expertise and comprehensive resources available to treat the smallest and sickest of babies.
At the end of March, Damian and Xavier took one step closer to going home- graduating from Lurie Children’s NICU. It was a moment that was surreal for Francennett and brought her to tears. “For 10 months, the NICU was our home, our routine, our support. To look back at where we started, and some days not knowing if we would ever reach this point, was overwhelming. I’m filled with gratitude.
Now at Almost Home Kids in Naperville, a facility that provides a bridge from hospital to home through an innovative community-based care system for children with medical complexities, Francennett is hopeful that one day soon they will be home. While at Almost Home Kids, Francennett continues to get the support she needs and education on how to care for Damian and Xavier.
“I never knew my strength. Watching them go through all they have has been the toughest thing in my life. The boys are my world, my heroes, my priority, my focus, my everything. They are my happy place.”
Damian and Xavier received care coordination through Lurie Children’s Bronchopulmonary Dysplasia (BPD) Program. The care coordinator’s goal is to improve communication and partnership with families to reduce the stress of prolonged hospitalizations, increase parental involvement and education around caring for medically complex babies, and improved preparation for discharge to maximize time at home.
The BPD Program at Lurie Children's is dedicated to the care, investigation and outcomes of infants with chronic respiratory failure. BPD is the most common complication of prematurity, severely affecting 20% of infants born under 1kg. Often, these babies require a significant amount of support, including ventilation and feeding assistance, and may have cardiac consequences from their lung disease.