PLATINUM2024

Love for Lily

Empower * Support * Connect

BOULDER, CO   |  www.loveforlily.org

Mission

Empower* Support * Connect: Supporting families in the Neonatal Intensive Care Unit {NICU} to thrive during their stay and at home. Love for Lily does this through facilitated support groups; teaching coping skills and providing community. Essentials Bags; items that can provide a little comfort and ease the burden of life in the NICU. Grants for insured families who spend 4 weeks or more in the NICU to help obtain therapies that support the well being of their child(ren). Lasting Love, Post-NICU Group for moms to come together for one year after discharge.

Ruling year info

2013

Executive Director, Founder

Sahra Cahoon

Main address

PO BOX 18957

BOULDER, CO 80308 USA

Show more contact info

EIN

45-4285961

NTEE code info

Human Service Organizations (P20)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

One in ten babies are born prematurely in the United States. Because these premature or sick babies need special medical attention, often to eat or breath on their own, they are admitted to the Neonatal Intensive Care Unit (NICU). Families are unexpectedly stuck in the NICU for days, weeks or months, and in the Denver Metro hospitals that we serve in, many NICU families are displaced from out of state. Many mothers arrive in a state of shock and distress. Rarely their arrival in the NICU is expected. Often mothers and families not prepared for their long hospital stay, and are watching as their babies fight for their life. The average NICU stay according to the March of Dimes is 46 days. The three most commonly reported feelings during this time are isolation, confusion, and fear. For many families, the NICU is a roller coaster ride. This experience can lead to short and long term trauma, grief, attachment issues, and PTSD.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

NICU LOVE: IN-UNIT SUPPORT GROUP

Love for Lily provides facilitated support groups for parents. We alternate weekly between Moms Group and Family Group. At each group skills are built to support families in thriving during their NICU and beyond; providing a safe space to talk about and process your birth experience, NICU Journey, and all of the many challenges and hurdles that one may experience in the NICU. Isolation is the most commonly reported emotion for mothers during a NICU stay. Coming together helps to build community and ease the feelings of isolation. Love for Lily facilitators are certified life coaches and bring multiple tools and skills to meet the needs of what is going on that day. Our 3 main tenants are; learning to breathe, building allies and emotional literacy.

In addition to our in-unit meeting NICU Mamas from any hospital looking for a supportive community and collective wisdom can join our Private Facebook Group and virtual support groups.

Population(s) Served
Parents
Women and girls

Lasting Love is a Mom's Group designed especially for NICU Mom's & their babes for one year after discharge. Providing; relevant topics and information to NICU mamas; a community of kindness, compassion and shared experience; and safe space for immune suppressed babies. This is an inclusive community, all mamas & NICU babies are welcome: open to breastfeeding, formula feeding & pumping! No matter which hospital you were served in you are welcome. We also have a Virtual Post NICU Moms group that meets on video chat weekly and is aimed to create community and give emotional support for moms that are either far away or cannot attend Post NICU group in person.

Population(s) Served
Parents
Women and girls

Essentials Bags are given to every family that is expecting a 2 week or longer stay in the NICU. These bags include simple things like a tooth brush and face wash that make a world of difference after a long night or a few long nights. There is a journals allow parents to write memories and thoughts and for nursing to help capture precious moments that happen while mom and dad are away. We include many items that bring comfort and that support the well being of mother and child.

Population(s) Served
Parents
Families

Providing monthly grants to ease the burden on families with a child or children who spend 4 weeks or more in the NICU served by Love for Lily and have medical insurance. Our grant program strives to ease the burden of medical debt and support families in receiving therapies, services, or modalities after discharge that support the health and well being of their child(ren). The mission of our Grant Program is to provide a helping hand to fill the gap.

Population(s) Served
Families
Parents

It is the little things that can make a big difference in a NICU stay. Inspired by the loving stitching of Gramma JoAnn, this program comes through the village. Sew with Love creates Lovies, used as scent clothes in those early days to help mamas bond with their baby's and baby's feel comforted when mamas is away. As children grow this little lovie can be used as a comfort object and provide soothing for even life's hardest moments.

Population(s) Served
Parents
Infants and toddlers

Love, Camden & Friends was created by a group of moms whose lives were forever changed by the loss of a baby. It's hard to know where or who you can turn to with the magnitude of grief and emotions that come with the loss of baby, with the birth of another, with the experience of leaving the hospital with one baby in your arms where there used to be two. Love, Camden & Friends cannot take away the agony of losing a baby although we wish we could. Our goal is to help ease, in some small way, what each of these families are experiencing. The journey towards healing is a long and arduous road full of questions, doubt, anger and sadness. It takes courage and bravery to walk down this path, and you don’t have to do it alone. We are mamas who have walked the winding path, we know all too well the pain of a baby’s death. There are so many who have come before us and there will be mamas to come after. We believe that healing begins with a community and that no family should walk alone. We offer all we can: support, love, and guidance.



Providing resources to help families as they navigate their loss. Immediate support includes information on how to tell your family, how to plan a memorial and stories of those who have come before. Together with JellyCats we will also gift each family with a weighted stuffy, weighted at their babies birth weight providing a tiny comfort for empty arms. For families with living siblings a matching lovey is gifted offering connection and comfort for even the smallest members of the family.

Population(s) Served
Families
Parents

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of multi-year contracts received

This metric is no longer tracked.
Totals By Year
Population(s) Served

Caregivers, Families, Parents

Related Program

NICU LOVE: IN-UNIT SUPPORT GROUP

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

In 2019, we served three area hospitals: Presbyterian St. Luke, Avista, UC Health. In 2020, we added Boulder Community Hospital. 2022 brought St. Joeseph's hospital into our partners.

Number of new grants received

This metric is no longer tracked.
Totals By Year
Population(s) Served

Caregivers, Families, Parents

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

We began seeking grants at the end of 2019. We are continually looking to grow the grants that sustain our organization.

Hours of programing delivered

This metric is no longer tracked.
Totals By Year
Population(s) Served

Families, Caregivers, Parents

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Programming includes group and individual coaching sessions, email and phone support, bedside visits, and education/training for medical staff. In 2020, we transitioned to fully virtual programming.

Number of participants engaged in programs

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Our organization has consistently introduced new programs and kept up with the landscape of COVID and virtual. Continuing to expand and bring programing to families as they navigate the NICU.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Love for Lily aims to support families in the NICU and after discharge. We aim to provide items that will bring a little light to their dark time in the hospital, we provide emotional support in-unit and continuing after discharge. We seek to create a community to support mothers through all of their struggles for example, post-partum depression, anxiety and PTSD. We help to alleviate a small amount of the financial burden for ongoing hospital therapies. In addition, we create a supportive community for families. We focus on the mothers, who have a continuously growing community of current NICU mothers who are supported by past-NICU mothers. We seek to help with the isolation that comes from the NICU experience and emotional hardships that can impede a healthy family and life. Additionally, for families who experience the death of a child Love for Lily provides a helping hand, a stuffed animal weighted to their child's birth weight and a safe place to share their experience.

Our strategies for supporting NICU families are vast. We provide "Essential Bags" to the families in the NICU which contain toothpaste, toothbrushes, face wash, hand sanitizer, tissues, chapstick, snacks, a journal to write down thoughts or info, and other supplies to survive and feel a little bit normal. We run a weekly support group that is run by a licensed life coach, inside the NICU, with breakfast provided for mothers to connect and be supported. We have a grant program for families to get some reprieve on their ongoing hospital therapy bills. We also support families after they are discharged with an ongoing Post-NICU group that meets weekly. We have a vibrant facebook community and a separate, private facebook group for NICU moms where past and present NICU moms share advice, encouragement and support. Additionally, we have bimonthly volunteer engagements and alternating bimonthly fundraisers to connect families in person and cultivate our community.

Our founder is a past NICU mother, whose baby was born prematurely and did not survive. Because of her deeply personal connection to this work, she is able to provide extensive support to the families. She does bedside visits and has many contacts with families each week, meeting our goals to support families emotionally. We have a network of volunteers that are active almost weekly and are able to keep our programs functioning smoothly. We have bimonthly fundraisers, work with private donors and corporate partners and are currently working on securing more. We have a Board of Directors that meet once a month and discuss programming, decide on fund allocation and provide hands-on support at our events and programs. We also have staff that maintains the programming to accomplish our goals.

Love for Lily began on Mother's Day 2012, just 6 months after we said goodbye to our daughter, Lily. Lily was born too early, on the fine line between life and death outside the womb, at just 24 weeks gestation. She taught us more about love in her short life than we ever thought possible and now her story lives on in our hearts & the work that we do through Love for Lily.
It started simply, with bringing coffee to other mom's in the NICU and giving them a place to come together to be heard, to process emotions and to hear that they are not alone on this journey. Since then we have developed a program to educate and support families during their NICU stay as well as after they are discharged and take their baby home. We provide Essentials Bags and offer facilitated support groups to families who's babies are in the NICU at four area hospitals: UC Health Anschutz (started May 2012) and Avista Adventist : Centura Health (started March 2017), Presbyterian St. Luke's (started July 2019) and Boulder Community Hospital (started April 2020). We also offer a virtual support program to mothers who live too far away to meet in person and currently during the COVID-19 pandemic. Our facilitated support groups are the pinnacle of our programing.

In 2017 we launched "Lasting Love" a post-NICU program designed especially for NICU Mom's and their babies for one year after discharge that serves mothers from all Denver Metro Area hospitals.

Our newest program, launched in July of 2018, is called "Love, Camden & Friends" in which we provide emotional support for mothers who had a baby that did not survive.

In the 10 years that Love for Lily has been in existence, we have directly supported over 10,000 people and given more than 60 grants to qualified families. We look forward to expanding our programing in the future in order to support more families as they courageously join us on this NICU journey.

Love For Lily is a Member of:
- Postpartum Support International
- The Nonprofit Alliance
- The Boulder Chamber
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How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We share the feedback we received with the people we serve, We tell the people who gave us feedback how we acted on their feedback

  • What challenges does the organization face when collecting feedback?

    The people we serve tell us they find data collection burdensome, It is difficult to find the ongoing funding to support feedback collection, Staff find it hard to prioritize feedback collection and review due to lack of time, difficult to get feedback from new parents due to lack of availability with baby's hospitalization

Financials

Love for Lily
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Compare nonprofit financials to similar organizations

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lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

Love for Lily

Board of directors
as of 01/16/2024
SOURCE: Self-reported by organization
Board chair

Sahra Cahoon

Chris Finer

John Murphy

Patti Smith

Lana Brennan

Elizabeth Black

Treasurer

Valerie Dye

UC Health

Emily Fawaz

Family Representation

Laura Heller

Secretary

Tonushree Tyagi

Amanda Slater Burgie

Family Represtation

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? No
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Organizational demographics

SOURCE: Self-reported; last updated 1/16/2024

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
Multi-Racial/Multi-Ethnic (2+ races/ethnicities)
Gender identity
Female, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability

Equity strategies

Last updated: 01/16/2024

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.