Alexander and his twin sister Nora arrived at just 25 weeks. Incredibly, Alexander weighed just 13.8 ounces—his sister weighed slightly more. As micro-preemies, there were many medical issues, but the most concerning was their underdeveloped lungs. After months on respiratory support, they were diagnosed with chronic lung disease
“A respiratory infection in the spring used up their energy reserves. In July they suffered respiratory failure,” recall Alexander’s parents, Sarah and Andy. “Nora never fully recovered and passed peacefully in September.” Miraculously, her little brother started to turn a corner. Alexander survived and after 466 days in the hospital they got to take him home.
The toll this takes on a family is hard to imagine, but Children’s Miracle Network Hospitals® at Gundersen Health System understands and was there to provide help during their time at the hospital. “CMN Hospitals gave us meal vouchers almost daily while our babies were in the Neonatal Intensive Care Unit. We also received gas cards and travel reimbursements,” Sarah explains.
Alexander, now age 4, is medically complex with delays in growth, speech, eating and motor skills. A mechanical ventilator supports Alexander’s breathing. Lungs continue to develop up until about age 7, so his parents are hopeful that someday Alexander won’t need the ventilator.
CMN Hospitals continues to help. “They have made our lives easier and his life better by helping us get him to therapy and to get in-home equipment to work on balance, strength and motor coordination,” Sarah explains.
Alexander’s family celebrate the small victories and are hopeful. He shows steady growth and progress in all aspects of development. He has a zest for life and is always ready to work at his therapy appointments.
According to his parents, “Alexander’s smile lights up a room. He is all boy, obsessed with trains and vehicles, and he loves to run and roughhouse. He is a miracle by any medical measure, and we can’t wait to see what he does with his life.”