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Feature: Lila's Story
When Lynn and Stephen found out they were going to be parents again, they were in disbelief. Their daughter Ava was barely three months old and their son Michael was not yet two. With a history of fertility treatments, the new pregnancy and its timing came as a surprise—albeit a welcome one.
The pregnancy proceeded normally up until 25 weeks when Lynn went into premature labor. Doctors were unable to postpone her arrival and baby Lila was born with her lungs underdeveloped. Uncertain about the long term implications of being born so prematurely, her parents were initially terrified and anxious, wanting their baby to thrive. Lila was given a tracheostomy and put on a ventilator. Slowly, Lila grew and improved and after 2 months, she was transferred to the Pulmonary Rehabilitation program at FranciscanHospital for Children.
Trying to meet the needs of their two young children at home, maintaining two full time jobs and caring for their newborn was not easy for Lynn and Stephen. They relied on the nursing staff at Franciscan to provide much of the physical connection babies need. “In addition to the high quality of medical care, the love Lila received from the consistent nursing staff assured me that her medical and developmental needs were being met. Even though we couldn’t always be there with her, we knew she was in compassionate hands,” Lynn recalls. “The nurses always knew how to find the right balance between medical authority and my input as Lila’s mother. For example, I wanted her to learn how to eat by mouth and not rely on her G-tube for feeding. The staff respected our wishes and today she eats the way normal children do.”
The staff at Franciscan considered the family’s needs throughout Lila’s stay as a patient and beyond. Nurses trained Lynn and Stephen so they would learn how to meet Lila’s medical needs at home. Prior to her discharge, they did a 24 hour “in-house leave of absence”, during which Lynn and Stephen provided all of Lila’s care with the medical team available as extra support. “When it came time to bring Lila home for the first time, we felt prepared and confident. Our nurses called to check in with us and even offered their assistance after we were discharged.”
Since coming home, Lila has continued to grow and improve. Last year, a bronchoscopy revealed a healthy airway and so her trache was able to be removed. Today, Lila is a happy and healthy daddy’s girl who rides a bicycle and loves doing art projects. She continues to see her Pulmonologist at Franciscan Hospital for Children but eventually those visits will end. Said Lynn, “The staff at Franciscan gave us comfort at a horrible time in our life. I hope parents like us read Lila’s story and know there’s hope for premature babies. Our little Lila is proof.”
Photo on the right: Lila pictured with siblings Ava and Michael.