Lucas was admitted about a month after he was born due to prematurity, sleep apnea and bradycardia, which is an abnormally slow heart reaction. Lucas’s airway was evaluated, and the medical team and his parents decided to give Lucas a tracheostomy with ventilation in order for Lucas to breathe properly. His new diagnosis and principal problem became subglottic stenosis, a frightening-sounding word that meant Lucas’ tiny windpipe was too narrow and he needed the trach to help keep it open. In late October, the tracheostomy was placed.
While still in the NICU, Lucas and his parents, Lexie and Luis received help, support and presence from unit child life specialists, providing photos, documenting milestones such as first bottle, and support during and after procedures. Lexie was able to be present during most of Lucas’s NICU admission, but became very appreciative and open to Josh Cares child life services; situations change, and Lexie and Luis needed extra help and so did Lucas.
Lucas was referred to us because Luis and Lexie were young, Lucas was their first child and the family needed social support. They visited as often as they could, but the Josh Cares team began to see him every day to promote normalization, socialization, growth and development—the core values of child life. This was accomplished by holding Lucas, reading to him, exploring toys, and supporting him emotionally for medical procedures. Lucas grew and grew in the NICU, and was soon transferred to the Transitional Care Center (TCC) in early December 2016; under typical circumstances, Lucas and his family would have received a whole new team of child life specialists—new faces in an unfamiliar environment. Not so with Josh Cares, since we follow our patients everywhere they may go: every day, at least one member of our team would see him, play with him, and interact with him. We knew this child, and this child knew us.
Often, when I would walk by his room, his smile would invite me to come and spend time with him. I would whip out my camera and he would smile and look directly into the lens, as if he was the Gerber baby. As Lucas grew older and stronger on TCC, he was able to play with us on a floor mat and really get to explore new toys, stretch and do tummy time, just like a typical baby. He loved his crib gym, both in the crib and on the mat. Other times, I would hold him in my lap and we would read storybooks; he would fold his little hands in his lap and truly listen and look at the pages with the most serene smile on his face.
We also began to see a reappearance of Lexie and Luis. By this time, Lucas had been on the TCC for about five months, and Lexie and Luis were excited to get Lucas home. They were finally able to hear the phrase, “discharge planning,” but still had an uphill struggle to find the nursing help they would require once at home. The Josh Cares team as well as the TCC staff felt such empathy for this little family, who just wanted to have their baby at home.
On Wednesday, July 25, 2017, I came into the child life staff office, and Amy, my fellow Josh Cares child life specialist, exclaimed excitedly, “Lucas is going home today!” The smile that lit up my face was unlike any other. Things just fell into place.
Amy and I gathered our discharge gift, the “Congratulations, Lucas!” banner I had made, along with a balloon and made for the TCC straightaway. We found Lexie and Luis already with Lucas, Lexie holding the now 11-month-old Lucas in her lap; both parents looked beyond happy, pleased, and proud. Lucas looked sleepy, but still managed to look up and smile at us. We congratulated them and shared their joy in taking Lucas home. They expressed their gratitude for our support and care over the past ten months; it was a true joy to spend time with their child, and we thanked them for allowing us to see him, too. I can only imagine what a celebration little Lucas’s first birthday party will be.
By Lauren M. Koehler –Josh Cares Certified Child Life Specialist