Kylie Fisher was admitted to the Neonatal Intensive Care Unit at Cincinnati Children’s Hospital immediately after her birth for treatment of her pre-diagnosed condition, Congenital Diaphragmatic Hernia (CDH). CDH is a birth defect that develops while the fetus is still forming in the uterus. A hole is formed in the baby’s diaphragm and exposes contents from the abdomen through the chest hole. This scary sounding diagnosis affected Kylie’s ability to breathe and her liver. Kylie was intubated immediately after birth to support her airway and was treated for pulmonary hypertension. Kylie’s road ahead of her consisted of CDH repair surgery, PICC placements, multiple blood draws, echocardiograms, a chest tube placement, CT scans and a G-tube placement. Kylie had her big repair surgery when she was just 10 days old. Throughout Kylie’s NICU admission, she worked hard recovering from her CDH repair surgery, weaning her oxygen settings to room air, and tolerating feeds.
Kylie and her parents received support from Certified Child Life Specialists throughout their admission in the NICU. The Josh Cares child life team supported any invasive and/or painful procedures Kylie experienced, provided multiple opportunities to support her typical growth and development through developmental play and encouraged family bonding by providing keepsake mementos, such as, photographs to document major milestones. Kylie’s parents were able to be present at bedside as much as they could, however due to work schedules, they visited mostly on the weekends. Kylie’s parents communicated several times to child life about how appreciative they were of the services and support we provided for Kylie while they were not present. Kylie was referred to Josh Cares because of her lengthy hospitalization, invasive medical experiences, developmental needs, and limited family presence. Kylie’s parents visited as often as they could, however the Josh Care’s child life team stepped in to meet Kylie’s needs and support her during times when they were away. Because of child life services, Kylie was able to have several developmental play sessions to support her typical growth and cognitive abilities, be held at bedside for lengthy periods of time which promoted positive attachment and normalization, and support during invasive experiences/procedures to support her ability to cope throughout her healthcare experiences. Every day we were able to interact with her based on her individual needs for that particular day.
Kylie grew and grew throughout her time in the NICU. As Kylie grew stronger she weaned to room air and was able to be held more frequently and have several play sessions out of her crib and on the play mat. She loved getting down on the mat to play with her jungle gym and looking in the mirror. Overtime, Kylie developed positive attachments and bonds with several caregivers in the hospital including child life, nursing staff, and physical, occupational and speech therapists. Kylie was not shy and smiled when anyone came in her room to play and interact with her. Often times, when I would walk by Kylie’s room, I would see her sitting up in a boppy pillow in her crib and smiling, giving me my invitation to come play! Other times, if I heard Kylie crying, I would come in to comfort and hold her. If we weren’t out of the crib playing we were rocking in a chair, reading books together and singing several songs. Kylie and I’s relationship grew, and overtime Kylie knew and recognized me just as I knew her and could recognize her developmental cues. During cute moments such as bath time, I would get out my camera and snap some photos. Kylie would look right into my camera lens and pose! I was fortunate enough to work weekends when Kylie’s parents visited and would even snap some family photos during their quality time with her.
On June, 27, 2018, I received word that Kylie would be discharging! This was such exciting news, as she had endured a long journey here in the NICU. I quickly downloaded a CD of all of the photos we had taken of Kylie throughout her stay. I eagerly presented Kylies parents with this and a Josh Cares discharge letter and survey. We celebrated together by sharing some of our favorite things about Kylie! Right before Kylie left the NICU for the last time, Kylie’s mom gave me the completed survey and thanked us child life for our services several times. Listed below are some quotes she left with us about her experience working with the Josh Care’s child life team.
“They are amazing, they took time to make sure she (Kylie) was happy and comfortable. They were here when we couldn’t be which means a lot to me and my family and I couldn’t ask for a better program to help with my child.”
“They are truly a blessing to my family and hope more families chose them for their child’s care and development, and to capture those special moments when they (families) cannot be there.”
