2008 Annual Report. Submitted By: The March of Dimes, New York State Chapter

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1 2008 Annual Report Submitted By: The March of Dimes, New York State Chapter The Weiss Family shares a special moment with their daughter during a family photo shoot at Albany Medical Center. 1

2 Table of Contents Letter from March of Dimes, New York State Chapter 3 Letter from Estelle Koh, Volunteer and NICU Graduate Mom Accomplishments and Highlights Activities 6 Funding Goals 8 The Abdullah Family with their son Samie in December at Albany Medical Center. 2

3 Letter from March of Dimes New York State Chapter January, 2009 Dear (CEO/NICU Chief/Nurse Manager): As we close the 2008 year, we wanted to take the opportunity to highlight our partnership with you in bringing information and comfort to NICU families under the umbrella of the March of Dimes Prematurity Campaign. The enclosed Annual Report demonstrates the impact of our partnership. This has been a transitional year for March of Dimes NICU Family Support program at Albany Medical Center NICU. In 2008, we: Distributed sensitive, informative materials to the families of over 400 NICU babies. Trained 36 NICU staff in developmental care principles by sponsoring Children s Medical Ventures training titled, Touch: The Universal Language Hired a new NICU Family Support Specialist Implemented a NICU Family Support communications plan that includes quarterly outreach via e-newsletter to program supporters, a monthly insert into the NICU staff newsletter, and a monthly newsletter and program calendar for parents who are currently in the NICU Implemented 49 activities for families. As families cope with and grow from the NICU experience, we know that our collaborative efforts have supported them through an extremely difficult time in their lives. Albany Medical Center is well on its way to embracing all principles of family centered care, including 24 hour access for parents; joining other progressive medical centers from around the nation. Thank you for your partnership; the March of Dimes looks forward to continued work together. Sincerely, State Director, March of Dimes, New York State Chapter 3

4 Letter from Estelle Koh, Volunteer and Albany Medical Center NICU Graduate Mom Dear (CEO/NICU Chief/Nurse Manager): I am a Chapter-NICU Action Committee member, a NICU Family Support program volunteer, and a NICU graduate mother. I gave birth to twin girls five years ago at Albany Medical Center. It was an emotionally-charged time for me. I was giving birth for the first time to a premature baby and her stillborn twin sister. I got to see my preemie daughter only for a brief second before they whisked her away to care for her. She was born at 30 weeks gestational age and weighed 3 lbs., 8oz. My first visit to the NICU could have gone better. I was anxious to see my surviving twin daughter and to know that she was okay, and I was so overwhelmed when I was told that I couldn t hold her. Upon seeing my reaction, our staff nurse changed her mind, and it was the most wonderful moment getting to finally touch her and whisper to her how much I loved her. I remember many situations during our daughter s hospitalization where I struggled to feel like her parent. Absorbing the terminology I was hearing and learning how to ask questions in the NICU environment was a slow learning process that took place over the next five weeks of my daughter s NICU hospitalization. We were often instructed to leave the NICU for a period of time for a variety of reasons such as staff rounds, and change of shifts. I often found myself sitting in a chair waiting for the moment when I could be let back into the nursery to wait for my child. When we were discharged, I was so thrilled that I was finally going to get a chance to take care of her, and to really feel like I was her mother, rather than a bystander. When my daughter was two years old, another preemie parent friend told me about a program that the March of Dimes had set up in partnership with Albany Medical Center, and asked me if I d like to go to a CNAC meeting. I wanted to see what I could do to help other parents have a positive experience while their baby was in the NICU. Slowly, I started to realize that the CNAC was creating some real positive changes in the NICU and I started to get excited about what was happening. As I started to learn how the committee was focused on helping to create a culture shift in the NICU toward a more family-centered environment, I was inspired to get more involved. The 4

5 more program events I participated in, the more I thought to myself that I wished all the new changes had been in place when my daughter had been in the NICU. Parents are now allowed 24-hour access to their babies. Kangaroo Care, or skin-to-skin holding of their babies, is encouraged. The March of Dimes gives Parent Care Kits to as many families as they can to educate them about confusing terminology. The bereavement support was the most touching change I have seen. I remember back to the time of my daughter s stay in the NICU. Her isolette had a sign that said Twin B, but no one ever acknowledged that there had been a Twin A. I had needed to talk about my stillborn daughter, but couldn t really connect to the right opportunity. I think it is so wonderful now to learn that parents who have suffered the loss of their child now have many more supports in place, like the Empty Arms Support Effort (EASE), a group spearheaded by our CNAC volunteers and supported openly by the unit s staff, and the NICU Family Support s bereavement module has collaboratively established protocol with the unit s staff to provide support to families who have lost a newborn. My daughter is now five years old and flourishing. I cannot describe how great it feels to be in a place where I can help to enrich the experiences of other parents on their own terrifying NICU journey. I am grateful to be able to use my background in Alyssa Koh today, age 5. the arts and crafts to facilitate parent activities for our NICU families, and I have learned that giving back in this way has been truly rewarding for me as a NICU graduate parent. This program and this partnership are truly special. Sincerely, Estelle Koh, NICU Graduate Parent, CNAC Volunteer The Children s Hospital at Albany Medical Center 5

6 Report of NFS Activities Albany Medical Center Parent Care Kits distributed Families who attended scrapbooking sessions Individual attendance at parent education hours Parent Activities/Parent Education hours offered NFS Parent Volunteers: Parent Education Hour Offerings What s for dinner? How your baby eats in the NICU Presented by Theresa Delorenzo, R.D., and Patricia Coffey, MS, RN, IBCLC. Breastfeeding Your Preemie Presented by Patricia Coffey MS, RN, IBCLC. Music Therapy Car Seat Safety Presented by Cindy Dort, Cornell Extension Baby safety begins with you! Presented by Mary Whittredge Parents interact with one another during a March of Dimes NICU Family Support scrapbooking session. 6

7 Summary of Existing Programs / Modules Family Empowerment The Family Empowerment module is at the heart of what the NICU Family Support program is designed to do. This module includes opportunities for unit staff to develop a knowledge base in family-centered care principles, the decoration or renovation of family spaces like the unit s lactation room and waiting area to be more inviting and soothing, and family education opportunities to become more involved and knowledgeable in their baby s care. Comprehensive Photography A picture can be worth a thousand words. Throughout this report, special photographs depicting family moments at Albany Medical center demonstrate the importance of photography in creating priceless keepsakes for families on their NICU journey. As part of the NICU Family Support photography module, cameras and printing equipment are available to unit staff and program volunteer around the clock. Special family photo shoots are offered monthly, where trained staff and volunteers spend extra time at the bedside capturing families caring for their babies. Weekly scrapbooking sessions are offered at no cost to families to develop their prints into lasting keepsakes. Bereavement Sensitive support to grieving families whose NICU journeys have taken a tragic turn is an important part of the NICU Family Support program. March of Dimes parent volunteers and hospital staff have partnered to create Empty Arms Support Effort (EASE), a parent-to-parent support group for families who have experienced loss in Albany Medical Center s NICU. The March of Dimes also provides a custom-designed memory box for the grieving family, and offers other support in cooperation with unit staff including bereavement scrapbooking and support to the Albany Medical Center annual memorial service. 7

8 Summary of 2008 Program Highlights Touch: The Universal Language A half-day staff training event sponsored by The March of Dimes and Phillips- Children s Medical Ventures for NICU staff. The 36 staff members who attended were shown techniques for minimizing stressful impact on their patients, and evidence-based research demonstrating the impact of developmental care practice on the brain development of the neonate. NICU Design The March of Dimes has participated in the NICU design meetings with other unit staff to provide parent-centered feedback where appropriate. New staff specialist Amanda Hill joins The March of Dimes and Albany Medical Center in September from Maryland, with a professional background in corporate communications and government affairs. Her personal background includes parenting a preemie daughter born at 25 weeks gestational age and weighing 1 lb., 2 oz., though a 98 day hospitalization at Johns Hopkins Bayview Medical Center in Baltimore, Maryland. The Hill family has served the March of Dimes as a March for Babies ambassador family and as a local division board member in Maryland. The family is native to New York, and now resides on Otsego Lake in Cooperstown. 8

9 2008 Funding Sources We are grateful to our local and national sponsors who help make March of Dimes NICU Family Support possible: Local Support: The Ronald McDonald House Charities of Albany National Support: Medimmune, Inc. Phillips Children s Medical Ventures Farmers Insurance Scholastic, Inc. March of Dimes Investment 2007 investment is over $2.2 million (includes local and national investment) 2008 investment is over $3.2 million (local and national investment In 2007, over 30% of the NICU Family Support hospital partners contributed full or partial funding to support the project. 9

10 2009 Goals and Objectives Complete quarterly staff training offerings. Co-presenting with staff at the 2009 Gravens Conference on the Physical and Developmental Environment of the High-Risk Infant in Clearwater, FL in January. Implement monthly special family photo shoots for NICU families. Implement weekly Parent Education Hours on a variety of topics that take a comprehensive approach to each subject. Develop and distribute a DVD tour of the NICU for families who are unable to visit prior to the birth of their baby. Develop Transition to Home module to replace retiring Family Empowerment module. (This Chapter-NICU Advisory Committee decision was directed due to the successful incorporation of the Family Empowerment program into the unit s culture, policy, and practices.) Begin laying the groundwork for the first Albany Medical Center NICU Graduate Family Reunion. Ms. Thompkins poses with her son at Albany Medical Center during a feeding. 10