Story of Founding
The story of Love for Lily’s founding is one of both immense love and profound sadness. On June 24th, 2011, a beautiful baby girl named Lily was born to Sahra and Ted Cahoon. At only 24 weeks and 5 days gestational age, Lily weighed in at just over one and a half pounds (26 ounces). Tiny but mighty, Lily lived for three and a half months in the neonatal intensive care unit, until she was brought home on hospice, where she died in the loving embrace of her parents. In the weeks and months after she died, Ted and Sahra grieved deeply for their loss, and Sahra found herself asking one big question: where are all the people? In their time with baby Lily, Sahra bonded strongly with their medical team — a group of dedicated, skilled, and caring nurses, doctors, and technicians in the NICU at the University of Colorado’s Anschutz campus. Then after discharge from the hospital, the family’s regular contact with these people abruptly ended, leaving a void where that support had been. In the Cahoons’ case, they had the gift of strong family and community support, but Sahra knew that this was not always the case for other NICU families. And she knew by experience that even with the comforting support from family and friends, the feelings of isolation and fear were intense, too intense for those who had not had the same experience to truly understand. NICU parents needed their own people.
So Sahra began looking for the support of people outside of the medical team, but she could not find them — where are all the people? She soon realized that there was nobody else; there was no community for people like her and her husband. And so she resolved to create that community herself, so that nobody else would have to walk that painful and lonely path alone again. On Mother’s Day 2012, just under a year after Lily was born, Love for Lily began its work.
Development of Organization
The first Love for Lily group meeting was held in June 2012 at University of Colorado at Anschutz, the hospital where baby Lily was born and lived for most of her days. Sahra brought coffee and treats to meet with a group of five stressed and anxious parents who wanted advice and information about how to navigate relationships with family and also with their medical teams. The first few meetings were relatively informal and conversational, but they tended to devolve into venting sessions that did little to help parents problem-solve and take care of themselves. Quickly realizing that people in crisis needed more structured coaching in coping and relationship skills, Sahra immediately sought out others to help design the NICU Love program: an experienced life coach, several nurses on the unit, and a parent advisory group, made up of three parents with children then in-unit and two other parents of former preemie infants. The group began by discussing what parents wanted and needed from group meetings with their peers and then set about creating a more formal and consistent format for the program. While these discussions were ongoing, Love For Lily hired its first facilitator to run the weekly group meetings, Nancy Stubbs, a certified professional life coach. Shortly thereafter, Sahra completed her own training and certification as a professional life coach and hired an additional certified life coach; together they planned the topics and methods for weekly group meetings and put them into practice individually as program facilitators.
As envisioned by Sahra, Love For Lily’s goal was never to “fix” parents but to help them manage stress by teaching simple but essential skills like deep breathing to calm the instinctual “fight or flight” reflex that kicks in when humans are stressed. This natural response to threats is essential to human survival but can be detrimental when it never shuts off, like when you are anxious day after day about your tiny baby’s precarious condition. So the first order of business for group meetings is for parents to practice really filling their lungs from the bottom up, expanding the airways and bringing more oxygen into the body, which has been demonstrated to be effective in calming the sympathetic nervous system. This simple act signals the brain to turn off the fight or flight response and is an important preventive measure to keep parents physically and mentally healthy. These and other proven techniques give parents skills to take care of themselves and be proactive problem-solvers and champions for their children’s health.
Since its founding in 2012, Love for Lily has served over 4500 families through our multiple programs. In the last three years, we have grown from serving one hospital to three hospitals, and we are working on a plan to expand our programming far beyond the Boulder/Denver metro area. Based on feedback from parents about the ongoing struggles they faced after discharge from the NICU, we developed the Lasting Love program which provides a safe space in the outside world to build community and to discuss the challenges, emotions, and realities of life after the NICU. We also began the Essentials Bags project to bring a bit of comfort to families while they are in-unit. Love for Lily relies on input from our NICU parent advisors, our steering committee, and the Board of Directors to guide our decisions about improvements to existing programs and to inform our plans for future programming.
1 Many support groups exist for people who have suffered loss, including the loss of a child, however very few are dedicated to serving the unique needs of parents of critically ill infants hospitalized in the NICU. Sahra felt strongly that parents of living NICU babies also have serious trauma to process but did not fit in with support groups for parents whose children had died nor in groups for parents of healthy term newborns. This belief has been confirmed over and over by parents who come to our post-discharge groups and express relief at finally having found people who can really relate to their experiences.
2 Nancy Stubbs facilitated groups only temporarily. Currently there are two facilitators employed by Love For Lily. We are looking to hire a third facilitator as we add another location for post-discharge group meetings.