Meet Trailblazer Sahra Cahoon

Today we’d like to introduce you to Sahra Cahoon.

Sahra, please share your story with us. How did you get to where you are today?
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 five 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 over a year after Lily was born, Love For Lily began its work.

The first Love for Lily group meeting was held Mother’s Day 2012 at the 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.

We’re always bombarded by how great it is to pursue your passion, etc – but we’ve spoken with enough people to know that it’s not always easy. Overall, would you say things have been easy for you?
It has been a bumpy road, as all the best ones are. Starting a nonprofit and launching programming, meeting donors and learning how to navigate hospital systems this was nowhere in my wheelhouse. However, I was an entrepreneur from the beginning of my working life as were both of my parents, jumping in with 100% of what I had to give was what I did. We learned so fast. I set up a Board of Directors made up of my family and best friends. We figured out how to host an event and asked for help more than ever before in my life.

I launched and figured it out as we went. Eight years later we are still here and are launching services at our 4th hospital on April 1st!! Advice, making an educated leap is always worth it. Jump and know that everything is figure-out-able thankfully there is google. Also, ask people for wisdom. If you admire a business person or another company or nonprofit, tell them! Reach out to the company owner and ask if you can take her to coffee. I have been so blessed along the way to meet with other EDs and really see the value in collective wisdom that comes from living life with the viewpoint that there is enough for everybody and your special talent, your superpower, it is needed in this world – don’t be afraid to share it!

We’d love to hear more about Love for Lily.
We support families to thrive in the Neonatal ICU through building community, teaching coping skills and building a team of allies you can lean on. At Love for Lily out goals are to help ease the feelings of isolation and anxiety for families that are walking through the NICU journey with their little ones. Teaching coping skills that mamas and daddies can use both in-unit and at home is a huge part of our work. We teach to tools so that families can use them to navigate many situations, Teaching emotional literacy sometimes I will have a mama say do we have to talk about the feelings, the answer is always yes! We also use tools such as breathing, learning to take a deep breath and settle your sympathetic nervous system.

Love for Lily offers in-unit support to families at Avista Adventist Hospital in Louisville, Rocky Mountain Hospital for Children in Denver, University of Colorado Hospital Anschutz in Aurora and as of April 1st Boulder Community Hospital in Boulder.

Our program line-up includes: NICU Love: Group meetings which alternate weekly between a mothers’ group and a family group. At each session, critical coping skills are practiced in a safe space where parents can speak freely to other parents and process their birth experience and NICU Journey. Parents also get much-needed coaching in practical skills to help them manage all of the many challenges that they may face during their children’s hospitalization.

NICU Love, Essentials Bags: Essentials Bags are given to every family admitted to the NICU at hospitals where Love For Lily serves. These bags include basics like a toothbrush and face wash, things that can make a world of difference after a long night or many long nights. The bags also contain a journal for parents to record memories and thoughts or for nursing staff to capture precious moments that happen while mom and dad are away. We include other donated items that bring comfort, supporting the well-being of parent and child.

NICU Love, Grants: Love For Lily provides one-time grants of monetary assistance to insured families of children who spend four weeks or longer in the NICU. The grant program seeks to ease some of the burden of medical debt on these families and support them in receiving therapies, services, or modalities after discharge that contribute to the health and well-being of their children.

Lasting Love: Lasting Love is a mothers’ group designed around the needs of mothers and their babies that is open to them for one year after discharge. Weekly group meetings provide information and education on topics relevant to NICU mamas, a welcoming community of kindness, compassion and shared experience, and a safe space to bring immune-suppressed infants. It is an inclusive community and is open to all mothers of NICU babies, regardless of the hospital where their child was born or hospitalized, including hospitals not currently served by Love For Lily.

Love, Camden and Friends: This Love For Lily group offers bereavement and grief support, love, and guidance to families whose lives are forever changed by the loss of a baby. Created by parents who have lost infants of their own, the group provides resources to help families as they navigate their loss, including immediate support such as information on how to tell your family, advice for how to plan a memorial, and the stories of those who have come before. Together with the company JellyCats, the program gifts each family with a stuffed animal, precisely weighted to match the birth weight of their babies, providing a tiny comfort for parents’ empty arms. For families with living siblings, a matching “lovie” is gifted, offering connection and comfort for even the smallest members of the family.

Finding a mentor and building a network are often cited in studies as a major factor impacting one’s success. Do you have any advice or lessons to share regarding finding a mentor or networking in general?
Show up, the best advice I have is to show up (and put away your phone). Networking is one of those things. It doesn’t work if you don’t show up. If someone invites you to a mixer, show up. If the local Chamber of Commerce is hosting a Young Professionals hour, show up. And here is the big one, when you show up say hello; I always look for a person with fun earrings on and that is who I walk up to and guess what I lead with… I love your earrings.

Contact Info:

• Website: lflnicu.org
• Phone: 720.526.2556
• Email: love@lflnicu.org
• Instagram: https://www.instagram.com/lflnicu/
• Facebook: https://www.facebook.com/lflnicu

    Image Credit:
ELC Photography, Erin Cox

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