A Memoir of a Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds
The 2017 Preemie Parent Alliance Summit was just as amazing as the previous ones!
Cook Children’s is a beautiful hospital. It has so many amenities for the patients and their families, designed to relieve some of the stress associated with a long hospital stay, including a Build-A-Bear workshop for the kids and a Starbucks for the grown-ups. What beats that?
But it’s not just the amenities that make Cook Children’s an amazing hospital- it’s the superb staff and their belief in Family Centered Care.
The summit agenda was designed so well that there was something for everyone- no matter if you were the founder of a nonprofit or a parent selling something you created to support the world’s future preemies. Below are some photos of our exhibit tables:
For those who were able to arrive early on Friday afternoon, there were two pre-conference sessions offered, as well as time allotted to set up your exhibit table. Dr. Yamile Jackson from Nurtured by Design and Deb Discenza from Preemie World presented “Improving Awareness and Practice of Kangaroo Care and Beyond” and Elizabeth Schneider of The Tiny Miracles Foundation presented “Perinatal Bereavement- How Peer to Peer Organizations can Support Families Experiencing Perinatal Bereavement”. There was also a Welcome Reception Friday evening- designed to help members network with each other and make some new connections, too. Sadly, I wasn’t able to attend any Friday activities but I heard they were all a success and a great time was had by all!
Saturday morning began with opening remarks from Keira Sorrells, the Founder and President of the Preemie Parent Alliance. She began by welcoming everyone to the summit and sharing what PPA has been up to since our last summit. Keira then handed the floor over to Natalie Gordon of NICU Helping Hands for her presentation called “Setting the Stage to Pave a Healthy Path to Leadership”. Natalie was the perfect person to discuss this, as she has been helping preemie families and serving the NICU community since the premature birth of her twins over a decade ago.
Next was the Keynote Address titled “Life Support: 3 Vital Strategies for the Aligned Leader” by superstar Sue Ludwig, President and Founder of the National Association of Neonatal Therapists (NANT). I personally learned a lot from her presentation. Only recently, over the past three years, have I really gotten involved in the neonatal community and I believe it is my true calling. I know for a fact that it is what I am most passionate about because I am always brainstorming different things I can do or make to improve a family’s NICU experience. But as many people will understand, the things that you are most passionate about can also be the very same things that suck the life out of you because of your passion level. It’s difficult to sleep at night because much of the work I do in this space happens once I’m done taking care of my family and household and grading my student’s lab reports. I need to learn how to balance better and Sue gave me some great tips and suggestions on how to do just that. Plus, she is a great motivational speaker and very engaging!
After a short break we all sat down to listen to a panel presentation titled “Advocating for a 100% Human Milk Diet for NICU Babies”- including Dr. Erin Hamilton Spence of MEDNAX, along with Scott Elster and Dr. Melinda Elliot of Prolacta Bioscience. This was a very informative panel discussion on the science behind an exclusive human milk diet, including 100% human milk fortifier added to breast milk, so that babies get only natural ingredients designed by the human body. This was a good one!
After lunch, we all gathered for Lelis Vernon’s presentation, called “Parents Working in QI: Where Are We and What Are The Potential Next Steps”. Lelis is from Baptist Children’s Hospital in Miami, FL and she is full of energy!
Next was our first Breakout Session- where members had to choose between “Combating Compassion Fatigue and Avoiding Burnout” by Tracy Pella from Connected Forever and “The Indispensable Anchor of Your Nonprofit Organization: Recruiting, Managing & Leading Your Team of Volunteers” by Lisa Grubbs from NICU Helping Hands. Both gave out valuable information and tips and received great reviews.
The day ended with “Celebrating Our NICU Children” by PPA President Keira Sorrells and Cristal Grogan. We all got to paint a rock and write an inspirational word or saying on it. This was such a nice way to end the day.
Once our day of presentations were over, we all had about an hour to get ready for our off-site dinner at Reata in downtown Fort Worth. Dinner was delicious and the company was even better. It was nice to chat with some members and attendees that I had yet to have a chance to speak with- including Ali Dunn (author of I Was a Preemie Just Like You) and Sara Mosher (Founder/President of Patient + Family Care). It was a great night!
Sunday morning began with our PPA Members Annual Meeting, after Keira introduced some of the major areas of business that needed to be discussed. A few of us spoke about some aspects of PPA of which we are involved in and then we has a short break before our first presentation of the day called “Developing Measures for Family Centered Care for Diverse Families”. This was a panel discussion, which included Krista Sigurdson of Stanford University, Dr. Jochen Profit of Stanford University and Lelis Vernon of Baptist Children’s Hospital. This session ended with our attendees being asked to provide some feedback and advice on several different things and we were all happy to participate.
After a short break we had had a choice between “Peer Support in the NICU: The Tiny Miracles Model & Lessons Learned Along the Way” by Elizabeth Schneider of The Tiny Miracles Foundation and “Preparing Future Leaders: How to Develop an Internship Program for Your Organization” by Ali Dunn (Me Two Books). While both were so interesting to me- I decided to sit in on the first because I am currently trying to create a NICU Parent Mentor Program at my daughter’s former NICU and I needed some advice. I was told that Ali’s presentation was super!
Next was lunch.
Once we all ate our sandwiches we were asked to choose one last Breakout Session to attend. Our choices were “The Bereaved Parent: Reframing the Outsider’s Perspective and Identifying Collaboration Opportunities” by Stacey Porter of The Tangerine Owl Project and “Is Family Support a Burden? Perspective From a Neonatal Nurse” by Sara Mosher of Patient + Family Care. As usual- I wish I was able to attend both, but that’s just not possible so I went to the first one because unfortunately I will have to mentor bereaved parents once I get my program going. Of course I wish this were never the case.
Sadly I had to leave mid-session because I had to catch my flight home as to not miss teaching my classes back in New York in the morning. Such is life, but I needed to go.
I don’t want to forget to thank the sponsors of our Preemie Parent Alliance Summit. Without them we would not be able to have such a great conference. So- thank you to Prolacta Bioscience, Draeger, NICU Helping Hands, Vivicare Health Partners, Your NICU Baby, Patients Like Me, and AztraZeneca– and Cook Children’s Hospital for donating their state of the art facility.
The Preemie Parent Alliance Summit is something I look forward to each year. Not only is it great to catch up with good friends, but it’s so inspiring. I always walk away feeling rejuvenated and ready to take on the world. I leave knowing that I am working towards something bigger- something that is new for me as of five years ago. Before my daughter was born extremely premature in 2012- I was content with my life thus far. Once our family experienced the roller coaster of a life threatening pregnancy and premature birth and we watched our precious Joy struggle to survive and overcome her preterm birth- we all changed. I have realized that I am meant to do what I can to help the future premature babies of the world and also help their families handle their own roller coasters.
Every single member of the Preemie Parent Alliance shares similar feelings as me and they are driven by their own private journey with prematurity. It feels like I’m going home to be with my family when I arrive at the PPA Summit. It’s feels so comforting to spend time with people who get you and share your feelings of pain and successes.
Oh… I also want to mention the PPA Members and Affiliate Members that came to our summit. Besides me (Jennifer Degl), they include Astarte Medical, Connected Forever, Courageous Steps, Eli Collins Foundation, Graham’s Foundation, Hand to Hold, Holding Tiny Hands Foundation, Instituto PGG, It’s a Preemie Thing, Lily’s Hope Foundation, MeTwo Books, Mothers’ Milk Bank of North Texas, National Coalition for Infant Health, National Perinatal Association, NEC Society, NICU Helping Hands, Nurtured by Design, Patient+Family Care, Preemie World, The Morgan Leary Vaughan Fund, The Tangerine Owl Project, The Tiny Miracles Foundation, Will’s Way Foundation, and The Zoe Rose Memorial Foundation.
And I cannot forget to thank a few more key people who worked tirelessly to make the 2017 PPA Summit a success. This includes our PPA President Keira Scorrells, who gives her time selflessly to make sure we all enjoy our time together and take away valuable lessons each other; Cristal Grogan who works behind the scenes and wears too many hats for me to list; and Lisa Grubbs who was on site and helped coordinate each aspect of the summit with the hospital, hotel and restaurant so that we had all of the spaces we needed and all of the food required to keep this group happy 🙂 I’m sorry if I missed someone.
And last, I want to thank each PPA member who serves on a committee (including the summit planning committee), because these positions are entirely volunteer based and those of us on the committees donate our time to help the Preemie Parent Alliance grow and thrive and evolve on a daily basis.
That’s all for now!
I’m already looking forward to next year’s PPA Summit. Rumor has it that it will be on the East Coast!
Whoo Hoo for me!
I’ll see ya there, but in the meantime please visit http://www.preemieparentalliance.org/ for more information and to see how you can get involved, and I’ll work on getting a real camera before I see you there next year so that I can take better quality (not cell phone!) pictures 🙂
It was also a nice distraction from the presidential election!
But in all seriousness, November is National Prematurity Awareness Month and November 17th is World Prematurity Day so the timing of the PPA Summit could not have been better.
Inova Children’s Hospital was gracious enough to allow our organization to take over it’s main conference space to hold our PPA Annual Summit. They even gave us guided tours of their new state of the art NICU (Neonatal Intensive Care Unit). It’s a beautiful hospital.
What is the Preemie Parent Alliance (PPA)?
The Preemie Parent Alliance (PPA for short) is a network of organizations offering support to families of premature infants. To ensure best outcomes for preemie families, the Preemie Parent Alliance is dedicated to representing the needs and best interests of preemie families in all facets of healthcare policy, care guidelines, advocacy, education and family support. As a national network we are establishing a unified parent voice to advocate for infants, who cannot speak for themselves, and their families. Together, we represent thousands of NICU and bereaved families across the country.
The PPA is committed to providing opportunities for emerging preemie parent leaders to enhance their leadership skills, improve support for families, and increase their involvement in all facets of healthcare policy, care guidelines, advocacy, and education.
Click HERE to learn about the PPA Members and what organizations they represent.
What is the PPA Summit?
The Preemie Parent Summit is the only two-day event focused on organizations supporting families in Maternal Infant Health, a field of healthcare long dominated by professional provider associations & legislators. About 90% of attendees are founders and executive directors of NICU parent support organizations from across the United States. Our members work in local, regional, and national capacities with NICU families along the continuum of care from high risk pregnancy to life after the NICU. The remainder 10% of our audience is made up of other Maternal Infant Health stakeholders, providers and industry leaders.
What happens at the PPA Summit?
The PPA Summit is the place where preemie parents, directors of support programs, preemie product innovators, authors and stakeholders all assemble to learn ways to better serve the NICU population and community, as well as collaborate on how this can be done by making partnerships and alliances to further our common goals.
The PPA Summit Pre-Conference included “The Advocacy Training Workshop” and “Training the Trainers: How to Equip Your Organization’s Peer-to-Peer Mentors Utilizing Best Practices”.
“The Advocacy Training Workshop” was hosted by the National Coalition for Infant Health and it was very helpful to me to learn how to better spread awareness about the issues I feel are important. Since I have spoken at a few Congressional Briefings in Washington D.C., and I hope to continue to do so, it was advantageous for me to participate in this workshop. You can read about my experiences speaking to Congress HERE and HERE.
“Training the Trainers” was hosted by Lisa Grubbs of NICU Helping Hands and the goal was to teach leaders and members of NICU Parent Mentor Support Groups the skills and tricks on how to better prepare their mentors to give the support needed to help NICU parents. The group also discussed how to work with the NICU nurses and neonatologists better so that more parents can be reached. Although I did not sit in on this session, I heard it was very good!
After the Pre-Conference workshops we all gathered in the Hyatt House Hotel to attend the “Welcome Reception” and networking activity. We were asked to sit with another member of a different organization and speak about what we do and what we would like help with- as far as making our reach and impact more successful. It was fun!
Our next day began with opening remarks from Keira Sorrells (President of both the PPA and the Zoe Rose Memorial Foundation). She always sets the tone of the Summit and reminds us all why we are sitting together.
Next, our Keynote Address was done by Theresa Nguyen of Mental Health America. She discussed the necessary task of self-care and how we can guide other preemie parents to take time to themselves and reboot so that they are better prepared to handle the roller coaster of the NICU.
After a short break, Shawnee Bigelow (President and Founder of The Starling Company) spoke to us on how to build alliances and form coalitions with other organizations so that we all reach the most parents and hospitals possible. She had some great advice!
Before lunch we assembled to listen to “Perspectives in Neonatal Health: Research, Legislative & Industry Panel”, hosted by Carolyn TenEyck of Prolacta Bioscience, Darby O’Donnell of Alliance for Patient Access and Lisa Klein of Inova Translational Medicine Institute. We all learned a lot about what’s being done on the research and industry side of neonatal health, as well as the legislative side.
After lunch we were separated into Breakout Tracks, split into two different rooms. I attended “NICU Expert Podcasts: Filling the Informational Gap of Preemie Parents”, hosted by Stephanie Vaughan (President and Founder of The Morgan Leary Vaughan Fund– of which I am a proud member of their Board of Directors). I was honored to introduce Stephanie and talk a little bit about what The Morgan Leary Vaughan Fund is and how we have raised money with the goal of research into treating and ultimately preventing Necrotizing Enterocolitis (NEC) in premature babies.
Once of the newest projects that The Morgan Leary Vaughan Fund recently completed is a podcast series called “Speaking of NEC”. It’s a series of interviews with relevant NEC experts (both physicians, nurses and parents) where various aspects of Necrotizing Enterocolitis are discussed. Stephanie shared how she created the podcast series and she also had the producer (Jeff Bradbury of JeffBradbury.com) Skype in to assist. This 12 episode podcast series can be found HERE on The Morgan Leary Vaughan Fund’s website and also on iTunes.
Unfortunately I could not attend the other Breakout Session at the same time, but I heard that Dr. Sue Hall was inspirational when speaking on “A Roadmap to Improving Your NICU”. Many people left there with new ideas and heightened motivation to bring back to their hospitals.
Our last informational sessions for the day were also Breakout Sessions and I had to choose one to attend. I decided to attend “Pregnant Women, Drug Use & NAS: Separating Fact from Fiction” hosted by Erika Goyer of the National Perinatal Association. It has always been an interest of mine. During my daughter’s 4 month stay in the NICU I witnessed many babies born addicted to various types of drugs and listened to them cry. Some were never held by their mothers and were discharged to Social Services. It always broke my heart and I have been searching for answers as to why this happens. Erika gave an eye-opening discussion on the real issues and what those of us involved in the NICU can do to help these babies and their parents.
Because of my choice of Breakout Session I had to miss “Funding Your Mission” by Jennifer Sharp of Bazelon Center for Mental Health Law. This was a great choice for leaders of nonprofits and I heard that it was very helpful.
Our day ended with a beautiful ceremony called “Celebrating Our Babies” where each attendee had a bag with a lit candle and was asked to “Celebrate” their preemie’s life- no matter the length.
It really was a beautiful sentiment. I found myself in the same position as I often do, with a type of “Survivors Guilt”. While I am so very blessed that my daughter Joy is with me today, and without any major complications from her premature birth, I often feel guilty about sharing her/our success story when in the company of so many parents who grieve the loss of their premature baby. This is something that I struggle with, and have written about in the past, but in the supportive environment of the PPA, I had no worries about judgement. Not with this beautiful group of people.
That evening we celebrated our friendships and efforts over a casual but delicious dinner (and drinks!) at Paladar Latin Kitchen and Rum Bar. We had a chance to unwind and gear up for the next morning.
Our last day opened with a “PPA Members Only Meeting” where Shawnee Bigelow from The Starling Company asked us to evaluate our membership and what we are doing to form alliances with other organizations and what we may want from the Preemie Parent Alliance.
Next Jenne Johns (author of Once Upon a Preemie) talked to us about “Health Disparities, Equity and Cultural Competency in the NICU: Challenges and Opportunities”. She gave us some great information on how to better help NICU who may not be represented well in the NICU and are in need of support.
I have to add that Jenne recently published a children’s book titled “Once Upon a Preemie” and it’s wonderful! I had the pleasure of spending some time with her during the Summit and I cannot wait to collaborate more with her. Check out her book! You can find it HERE.
Before lunch we once again had to choose Breakout Session and I attended “Allies After the NICU: Alone We Are Rare, Together We Are Strong” with Mary Midolo of The Morgan Leary Vaughan Fund (Morgan’s Fund) and Melanie Gibson of the National Organization for Rare Disorders (NORD). I once again had the pleasure of introducing the speakers and sharing some of the work Morgan’s Fund has done with NORD. Mary and Melanie spoke about the partnership (alliance!) that Morgan’s Fund and NORD has made to create The Living History Registry for patients diagnosed with Necrotizing Enterocolitis (NEC) and how this partnership and project with help many future babies and adults who have been diagnosed with NEC. Maybe it will even help figure out ways to predict and prevent it in the future! That would be great! The registry should go live in December so stay tuned to www.morgansfund.org.
The Breakout Session I was unable to attend was called “Social Media: The Digital Watercooler” and it was hosted by Haley Steinkuhler of Connected Forever. I was told that the attendees learned how to use social media to further their goals for their foundations and reach more NICU parents.
After lunch we all attended “Perspectives in Neonatal Health”- a panel discussion involving Robin Baker (Inova neonatologist), Sara Donahue (March of Dimes NICU Family Support), Lynn Hardy (Innova NICU Nurse and Educator) and Christine Tran (Inova NICU Social Worker) and moderated by Danielle Bischoff (Preemies Today). It was host to a lot of engaging conversation on how to better support NICU parents and better take care of our neonatal population as a whole.
Our last session was called “Navigating the Education System as a Preemie Advocate” by Tracy Pella (Connected Forever). Here Tracy spoke to us about how to make sure we call got the necessary services for our children. She taught us about education reform and law and where to look for the resources and support we need to best serve our babies as they grow through school.
That’s it in a nutshell! Except it the Annual PPA Summit was more than just a series of lectures and breakout sessions. It truly was a place to meet with old friends and make new ones, as well as a safe place to speak to people who understand what it’s like to have a premature baby and navigate the NICU life and post discharge life. It was also a place to cry and laugh and form new alliances.
What is the PPA’s Mission? Great question…
The Preemie Parent Alliance (PPA) stands alone as the only national network of support organizations serving families who find themselves with a critically ill infant in the Neonatal Intensive Care Unit (NICU). Our unique member organizations are all led by parents who have had the traumatic experience of giving birth to a baby weeks before they should have, in a manner they did not expect. To ensure best outcomes for preemie families, the Preemie Parent Alliance is dedicated to representing the needs and best interests of preemie families in all facets of healthcare policy, care guidelines, advocacy, education and family support.
I think the PPA successfully works towards it’s mission each and every day.
I have to mention that the PPA Summit would not be possible without Cristal Grogan. She is the woman behind the scene who runs it all. Thank you Cristal!
I also want to thank the planning committee: Danielle Bischoff (Preemies Today) Tanya Clay (Hand to Hold), Deb Discenza (Preemie World), GiGi Khonyongwa-Fernandez (Families Blossoming), Cristal Grogan (NICU Helping Hands), and Julie Howard (Northwest Printed Apparel). They worked tirelessly to make sure the event was a worthwhile experience for all.
I have to thank Keira Sorrells (President of PPA) for her efforts to keep the summit going each year and ensuring that our presentations are engaging and relevant to all of the PPA members and attendees. She works for the success of each PPA Summit- all while simultaneously maintaining the Zoe Rose Memorial Foundation. Thank your Keira!
And last, I’d like to thank every person and organization that attended the PPA Summit because it would not happen without attendance; Connected Forever, Courageous Steps, Eli Collins Foundation, Families Blossoming, Graham’s Foundation, Hailey’s Hope Foundation, Hand to Hold, Holding Tiny Hands, Keep Em Cookin, Lily’s Hope Foundation, National Perinatal Association, Little Giraffe Foundation, NICU Helping Hands, National Coalition For Infant Health, NEC Society, University of Utah Hospital, Pebbles of Hope, Preemies Today, Preemie World, Project Sweet Peas, The Morgan Leary Vaughan Fund, Will’s Way Foundation, The Tiny Miracles Foundation, Jenne Johns (author of Once Upon a Preemie), Kelley French (author of Juniper), and me Jennifer Degl (author of From Hope to Joy).
I can’t wait until next year’s PPA Summit. Where will it be held?
Please visit the PPA website to learn how you can get involved or join.
How are you spreading awareness for World Prematurity Day today?
It’s not every day that one gets to be in the same room with so many people who share the same goal of figuring out how to help premature babies and their families. Many heads can accomplish much more than just one and I believe many great ideas and alliances came out of both of these conferences.
Today I’m sharing my experience at the PPA Summit, and I’ll write another post about NANN later this month.
Although I arrived slightly late to the PPA Summit’s opening reception, it did not prevent me from having a great first impression. Everyone welcomed me as if I knew them all for years. In fact, I had only met a few of the PPA members before this year’s summit and it was actually the first time I had conversations with the majority of the group.
Keira Sorrells (co-founder of the Preemie Parent Alliance) gave the opening remarks at the Welcome Reception. A few things she said struck me as very significant. In my own summary of her words, Keira suggested that our PPA membership, an organization made of parents of premature babies, had the power to create tangible changes in the way we care for premature babies and their families in our country. We can use our combined skills and voices to enact change in hospital policies, protocols and even influence the legislatures that govern our babies and how they are treated.
Who better to speak for our babies, then the parents who love them more than words can describe?
Keira has her own very powerful story on how she became involved in such a cause. She is the founder and president of The Zoe Rose Memorial Foundation. The Zoe Rose Memorial Foundation provides emotional support, educational resources, and awareness focused events, which inspire hope in parents of preemies while in the NICU, post discharge and for those who have suffered a pregnancy or infant loss. Keira and her husband Richard gave birth to triplet girls at 25 weeks gestation and although she fought for many long months, their daughter Zoe did not survive. You can read about The Zoe Rose Memorial Foundation HERE.
Keira has made it her life mission to spread as much awareness and help as many preemie parents as possible, by reaching out to other organizations that support premature babies so that they could combine into the Preemie Parent Alliance. By design, the Preemie Parent Alliance encourages each organization to help each other and together these organizations could have a farther reach.
I joined the Preemie Parent Alliance in 2013 and I have already learned so much! Please click HERE to learn more about the Preemie Parent Alliance and what they do.
Day 2 started early- with a 7:45 am shuttle to Methodist Dallas Medical Center. Once registration was complete, we all sat down to begin our day. Each year the PPA Summit has a theme. This year’s theme was “Innovation and Sustainability: Future Trends for Fragile Families” and it was about the how we address the needs of our growing population of premature babies as both the technology and family demographics are changing rapidly. I believe the summit lived up to its theme.
We all participated in a networking activity that was very valuable to me. Each conference attendee was able to request a 10 minute meeting with another attendee and there were 3 scheduled meetings. I was lucky enough to sit with Cheryl Chotrani from Pebbles of Hope, Cassandra O’Neill from Wholonomy, and Allison Epps from 22w6d.
Cheryl Chotrani is an inspiration to me because of the aspiration she has for her organization. She is a media specialist with goals of using technology to help babies born prematurely in under-served areas survive and thrive through parent education. I am looking forward to working with her and Pebbles of Hope in the future!
Cassandra O’Neill gave me several ideas on both how to increase my success in setting up a parent mentor program at my daughter’s NICU and also how to branch out into doing more public speaking with the goal of spreading prematurity awareness.
Allison Epps has an amazing story. Her son James was born at 22 weeks 6 days, before the allowable resuscitation gestation, due to her accidentally giving the hospital staff the incorrect due date. Many US hospitals do not regularly resuscitate babies born before 23 or even 24 weeks gestation. Allison’s son James was saved due to a mistake and now she has made it her mission to change hospital protocol to allow other babies to be saved at earlier gestations if the parents make that choice. I got to meet James and he is a wonderful and happy little boy. Click HERE to read about 22w6d.
I was honored to host a Lunch Forum called “Journaling Through Trauma” in which I facilitated discussions on why it is so important to keep a journal while your baby is in the NICU. You can view my “Take Away Points” by clicking HERE and you can also view my online presentation (which I share with various NICU staff and support groups) by clicking HERE.
Other forum hosts were Cheryl Chotrani (Pebbles of Hope) who guided a discussion on how the media can be used to help combat prematurity and increase infant health; Sheila Gephart (NEC Zero) who talked about her self-developed early warning system used to detect NEC (Necrotizing enterocolitis) and other ways to prevent it; Peter Goodman (International Business Times) who discussed how to reach the media and use it as tool to spread awareness; Holly Gray (Hacking Disabilities and NICU Helping Hands) who facilitated a table discussion on “Simple Marketing Strategies”; and Yamile Jackson (Nurtured by Design) who discussed how her ergonomics and human factors engineering training allowed her design two amazing products (The Zaky and the Kangaroo Zak) used to promote developmental care for NICU babies. Yamile is trying to get hospital staff to recognize the need for more comforting and nurturing care of babies and she’s advocating for kangaroo care soon after birth.
Deanna Fei was the summit’s Keynote Speaker and she did a great job putting into words what it’s like to parent a micro preemie both during and after their time in the NICU. Due to circumstances out of her control, Deanna was forced into the spotlight and her daughter’s story made public. Because of this, and her background as a writer, Deanna felt that she had to write a book about their story and it’s called “Girl in Glass”. I read Deanna’s book a few months back and I have to admit that it took me a long time to read it because so many of the moments she skillfully put into words, were very similar to my daughter’s birth story and I had to put it down several times due to getting very emotional. I would recommend “Girl in Glass” to any preemie parent who may be reading this, as it is comforting to know someone else has struggled with the same circumstances and emotions as you are likely experiencing as you read this. HERE is a link to her book on Amazon.
Many excellent presentations were given on several topics. I particularly liked the examples given by Cassandra O’Neill on how to reach our dream goals for our organizations, products and support groups. Cassandra caused me to reflect on the goals I have for myself, as far as a volunteer in the many organizations I work with, but also allowed me to dream of what I would like to accomplish as an individual- looking to make change in the ways we treat premature babies and their families.
Other Day 2 presenters were Amy Vickers of The Mothers’ Milk Bank of North Texas and Dr. Erin Hamilton Spence (Neonatologist in Pediatrix Medical Group) who both spoke alongside Jennifer Canvasser (Founder and Director of NEC Society) about nonprofit collaboration and how they can enhance effectiveness; and Dr. Sue Hall (who discussed the importance of psychosocial support for NICU parents).
The NEC Society is a nonprofit organization dedicated to reducing the incidence of NEC (Necrotizing enterocolitis). Jennifer Canvasser’s son Micah tragically lost his battle to NEC after fighting for several months following his premature birth. You can read about his story HERE and see how she has tried to turn her personal pain into a positive way to help others.
Dr. Sue Hall is a neonatologist at St. John’s Regional Medical Center in Oxford, CA, where she moved after serving for several years as the Medical Director of the Stormont-Vail Healthcare NICU in Topeka Kansas and the author of “For the Love of Babies”, published in 2011. She is on the Board of Directors for the National Perinatal Association, where she is now active in promoting support for parents of NICU babies. Her presentation was called “Recommendations for the Psychosocial Support of NICU parents.” Dr. Hall is advocating for better preparation and mentoring of parents while their babies are in the NICU and also after discharge. Her presentation was particularly interesting to me, as well as inspiring, as I am in the process of setting up a NICU parent mentor program at Maria Fareri Children’s Hospital in Valhalla, NY. Click HERE to visit Dr. Hall’s website.
Tuesday night was fun as we all headed to dinner at a local Mexican restaurant in downtown Dallas. The food and margaritas were delicious and we all got to unwind from a busy and emotional day.
Day 3 began with another shuttle ride from the Magnolia Dallas Hotel to the Methodist Dallas Medical Center. Upon arrival, Stephanie Nobels-Beans gave her presentation on “Breaking Barriers and Crossing Lines” which discussed how we should all work together to bring about change, peace and harmony. Stephanie runs a home for homeless women and children. She is known for saying “People are not looking for a hand-out; they are looking for a hand-up.” Stephanie is the founder and Executive Director of Fields of Diamonds House of Blessings.
Suzanne Smith from Social Impact Architects gave a very thought provoking and engaging presentation called “Storytelling in the Social Sector” where she discusses how nonprofits and other organizations/companies can create a real, scalable impact through social media. Everyone wanted more from Suzanne when she was done speaking! Luckily we can visit her website (HERE) to see all of the resources and advice that she has to offer.
Katie Reginato-Cascamo was next and she discussed “Servant Leadership: Recognizing and Revolutionizing Your Leadership Paradigm”, where she talked about the different types of leaders and made us all think about what type of leader we were and what type of leader we wanted to become. Although I don’t run an organization, I have been a teacher for over 17 years and this presentation caused me to think about the ways in which I guide my students through the learning process. Katie’s presentation also allowed me to imagine the type of leader and model I will be as the head of the parent mentor program I am setting up at my daughter’s former hospital. Katie is the Organizational Development Consultant for Hand to Hold and you can click HERE to see the wonderful work they do to help NICU babies and their families.
The last speaker before lunch was Dr. Martin Lee of Prolacta Bioscience. Prolacta is the pioneer in standardized human milk-based nutritional products for premature infants in the NICU. They have developed an entirely human milk-based fortifier for breast milk; so that premature babies are get the benefits of human milk while upping their caloric intake and this allows these fragile babies to avoid formula. There is research supporting how exclusively milk-fed babies have lower instances of infections, including NEC (Necrotizing enterocolitis). Dr. Lee gave a very informative and engaging presentation on the research being done to increase survival rates of premature babies by using human milk-based products.
After another educational and fun Lunch Forum in which I got to speak to several people on the importance of “Journaling Through Trauma”, a panel was set up on the main stage to discuss the summit’s hot topic. This hot topic was titled “The 9%: Why Offer Resuscitation to 22 Week Infants”, and it was very emotional for many of us. The panal consisted of Allison Epps of 26w6d, Dr. April Bleich (a Maternal Fetal Medicine specialist from Fort Worth, TX), Natalie Gordon of NICU Helping Hands, and Dr. Erin Hamilton Spence. The discussion was focused on the growing debate on whether or not to resuscitate babies born at 22 weeks or earlier and how much different hospitals differ on their policies.
This presentation was very difficult for me to sit through without having my own flashbacks of conversations with doctors both prior to and shortly after my daughter’s 23 week birth. After having my first life threatening hemorrhage at 17 weeks pregnant, I was told to abort my baby because she would most certainly be born a micro preemie and her quality of would be very low, if she survived at all. These conversations repeated themselves again during the following 3 hemorrhages (each threatening my life) as I was being transfused with blood trying to save both of our lives. I was forced to speak to several doctors who all felt the same way. Ultimately, my last hemorrhage caused me to deliver my daughter as a micro preemie, as warned, and although we both needed many life-saving measures and procedures, we are both here today to show that each pregnancy and each birth cannot fit into the same box.
While unfortunately many mothers and babies will not be as lucky as we were, there are mothers and babies that survive and thrive after a micro preemie birth experience and more research needs to be done; and protocol needs to be developed to allow the parents to participate in the decision to begin life saving measures or to just begin comfort care. With medicine and technology advancing, and the fact that several studies show that babies born at 23 weeks are not developmentally behind 24 weekers by Kindergarten age, it may be possible for the same to be said for 21 or 22 weekers in the future. This presentation caused me to realize how although over three years has passed since my daughter’s birth, I can still remember the feelings and conversations with medical staff as if it were last week. I wonder when that will stop.
Gretchen Lawhon of NIDCAP Federation (Newborn Individualized Developmental Care and Assessment Program) gave the last presentation of the PPA Summit. It was certainly last but not least! Gretchen was an engaging speaker who with over 25 years experience as a NICU nurse. She discussed all of the ways in which hospitals can incorporate more developmental care into their practices. She is quoted as saying “The Baby is the Boss” and agrees that we should not wake a sleeping baby to perform routine tasks unless it is medically necessary, as babies develop and heal the most when they are asleep.
Gretchen continued to reinforce that babies should be held skin-to-skin as soon as possible and it does not need to wait until the baby is entirely stable. I found this important because I did not get to do hold my daughter skin-to-skin for over a month after her birth and it has always bothered me; thinking how she did not feel my love and support and that no one was comforting her when she needed it the most. That being said, once they allowed me to do it, I never put her back! Gretchen even mentioned that some hospitals in The Netherlands are doing intubations and extubations while the baby is on mom’s skin. That is impressive! Why not do painful procedures on the babies while they are the most comfortable and likely to feel less pain?
I was lucky enough to get to speak to many of the other summit attendees in-between sessions or during dinner time. They include Andy Male (author of “Go Preemies“); Tracy Pella (Co-Founder and President of Connected Forever; Kathleen Mills from Fragile Beginnings; Nick Hall (Co-Founder and President of Graham’s Foundation); Kelli Kelley (Founder and Executive Director of Hand to Hold), Tanya Clay (Program Director of Hand to Hold, and Erika Goyer (Education director of Hand to Hold); Bob Shelby (Executive Director of Holding Tiny Hands); Julie Howard (Founder of It’s a Preemie Thing); Kristy Love (Director of Operations for National Perinatal Association) and Lisa Grubbs (Founder and President of NICU Helping Hands).
Unfortunately Leelee Klein (President of The Tiny Miracles Foundation) was not able to attend the summit after planning on coming and it was our loss! I have known Leelee for a few years now and I can say that she would have had a great deal to contribute to each discussion. Leelee is an asset to all start-up nonprofits as she has been very successful with her own and has helped countless families of premature babies in Connecticut.
Many PPA members and organizations could not make it to this year’s summit for various reasons and other commitments. They are The Morgan Leary Vaughan Fund (which I am on The Board of Directors and proud of it!), Little Giraffe Foundation, Eli’s Hope, Families Blossoming, Keep Em Cookin, Minnesota Preemies, Preemie World, Kasey Mathews, The Tangerine Owl Project, Teenie Preemie, The Foundation for Prematurity, Preemies Today, and Skyler’s Gift Foundation. I wanted to mention them in the hopes that we can encourage them to attend next year. Every member has their own prematurity story and experiences that can be shared to help the Preemie Parent Alliance extend their reach- with the goal of helping as many families and babies as possible.
I also want to thank the sponsors of the PPA Summit, as it would not have happened without them. So, a big thanks goes out to Prolacta Bioscience, Medimmune, Epic, Medela, Invictus Medical, AstraZeneca, Your NICU Baby, and Methodist Dallas Medical Center.
Extra special thanks go to Cristal Grogan, who is the creative technology expert behind the PPA and the summit. Cristal works behind the scenes to make sure all of the summit’s digital needs are met and she does a great job at it!
I am already looking forward to next year’s PPA Summit.
Where will it be?
East Coast? Just sayin’- LOL!
The 2014 Preemie Parent Alliance Summit was a total success! While it was a little too hot for me (104°F) in Phoenix, the majority of the conferences were in air conditioned rooms at the Hilton Double Tree Suites in Phoenix, AZ. The weather could not have been nicer throughout the weekend. Apparently, a few days before the PPA Summit kicked off, Phoenix had record breaking rain and parts of the city were flooded. There were almost no remnants of this when I arrived.
I am writing this post because I was touched by all of the love that went around the PPA Summit, but also to share with you the MANY organizations and resources I had the pleasure of getting to know, with hopes that some of you can find a resource to help through your own prematurity/NICU journey.
The PPA Summit kicked off with a “Welcome Reception and Dinner” at the Hilton. It was then that I got a chance to meet so many of the most influential people on the front lines in the fight to improve the lives of premature babies and their families. Keira Sorrells, who is both the main force behind the PPA and the founder of the Zoe Rose Memorial Foundation, was the first speaker of the night. She did an amazing job explaining the roles and goals of the Preemie Parent Alliance and sent the tone for the weekend.
The Zoe Rose Memorial Foundation provides emotional support, educational resources, and awareness focused events, which inspire hope in parents of preemies while in the NICU, post discharge and for those who have suffered a pregnancy or infant loss. It was started by Keira Sorrells, who after experiencing the trauma of an extremely early delivery, life in the NICU, caring for a special needs child, and the very untimely death of their daughter, Zoe; felt driven to find new ways to help other parents facing the same challenges.
It was an amazing evening and the momentum continued on in the morning. Dr. Alan Spitzer (a seasoned neonatologist, senior VP of research at Pediatrix Medical Group, and preemie grandpa) was the keynote speaker. His speech was informative and inspirational at the same time. It was so nice to hear a doctor encourage parents to participate more in their NICU baby’s care. He supports the belief that doctors should share more information and parents should ask more questions and become more involved in their preemie’s medical decisions.
Dr. Spitzer really wants the parents to feel comfortable questioning the doctors methods and orders (gingerly- not aggressively) so that they can understand what is going on. He would like the NICU doctors to freely share statistics on mortality and recovery rates, based on gestational age at birth and the many different afflictions premature babies may have. He believes, as do I, that a hospital’s records should be an open book. Dr. Spitzer also shared some of his experiences with us and encouraged us all to advocate breast feeding and kangaroo care to NICU families. He showed us the data, which clearly concluded how they both positively impact the outcome of a premature baby.
Breakfast was followed by a Speed Networking session. It was like speed dating for professionals! All of the attendees were put into lines facing each other and then we had 30 seconds each to explain who we were, why we were there, our goals etc… Then, we had 15 seconds to write down what we learned about each person on a card. The first few runs were stressful, and then it was fun! What amazed me the most was the similarities in each person’s spiel. Each and every person chose to talk about how they want to help other families struggling with prematurity and that says a lot! I learned that I was in the company of many people who shared my goals and understood my life. I also learned that unlike me, so many other PPA members lost their babies due to prematurity and my heart ached for them.
The next session was excruciating but necessary for people who want to work in the NICU with families of preemies, because the reality is that many of those preemies do not go home. It was called “The Benefits of Supportive Bereavement Care; Emotionally and Financially” and it was quite emotional. Thank God Keira had tissues on each table! Jill Wilke, a former NICU nurse and Lead Educator for Resolve Through Sharing (a bereavement and advance care planning service) gave a powerful speech on grief and how to help others work through it. Frankly, I am not sure how the parents of angel preemies made it through this lecture, but they did. And they did so by putting aside their own grief so that they could learn how to help others through similar situations while working with NICU families in the hospitals. They are all my heroes!
After a much needed lunch break, I was able to sneak 30 minutes by the pool and spend some time with Stacy Porter from The Tangerine Owl Project-who lost her daughter due to a NICU infection. She is a very special person who wants to help families that are experiencing the same pain; a pain that only parents who lost a child can understand. I am so glad I met her and I hope we stay in touch because she touched my heart!
Next, Chris Linn (Executive Director of Feeding Matters) gave a very informative talk about feeding difficulties in preemies. Chris’s premature daughter was tube fed for the first six years of her life and she has since dedicated her life to helping children who struggle to eat. She helped develop the one-of-a-kind Infant and Child Feeding Questionnaire used to diagnose infants with feeding difficulties. Although my daughter was only tube fed for 4 months and only had mild reflux upon discharge, I have met many families that have to tube feed their babies for extended periods of time and it is very stressful on everyone and can be painful for the babies.
The last official lecture of the day was led by Shelley Ackerman (Iowa Department of Education) and Susan Selby (Holding Tiny Hands). They gave us all excellent advice on how to get the most out of your local school system and the tools (and back bone) needed to do so. I learned that my miracle micro preemie’s education path may be a bit more challenging than my three older boys’ has been so far.
At the end of our first long day, we all had some time to decompress and “hang out” together at the pre-arranged off site dinner at a restaurant called El Chorro. It was nice to get dressed up and eat (and drink!) with the very same people who were sharing all of their expertise with us, in a more relaxed setting. El Chorro had some great views of the beautiful rock formations surrounding the Phoenix area- and some great food!
During dinner I sat with Stephanie Vaughan and Mary Midolo from The Morgan Leary Vaughan Fund. Stephanie founded this organization after her twin boys were born at 28 weeks gestation. One of her boys, Morgan, developed NEC (necrotizing enterocolitis) and required a surgery that removed 20% of his intestines. They are 4 years old and healthy today, but the nature of their journey inspired this amazing non-profit organization that raises money for the research needed to treat and prevent necrotizing enterocolitis. I am proud to say that I am a member of The Morgan Leary Vaughan Advisory Board (since July of 2014 after meeting Stephanie and Mary at another event) and I look forward to helping them raise as much money as possible. Although Joy did not have NEC, a good friend of mine (fellow preemie mom from the NICU) lost her daughter to NEC while we were all in the NICU together. It is something that needs to be eradicated!
I’m pretty sure that I fell asleep as soon as my head hit the pillow Saturday night. Sunday was the final day of the PPA Summit and more was to be learned and shared. Breakfast on Sunday had an interesting set up. Each table had a title of a “Trending Topic” to be discussed while eating. The set up for lunch the day before was the same. I ate with the “social media” table and shared what I have learned since writing my book and blogging and I also learned a few new tricks.
The last event I attended was a talk given by Nick Hall, the co-founder of Graham’s Foundation. First off, he is an exceptional speaker and motivator, but he is funny too! Nick and his wife Jennifer Hall (also co-founder of Graham’s Foundation) lost their son (Graham) just 45 days after a premature birth. The fact that they turned such pain into this amazing organization aimed at helping parents with premature babies is one feat in itself, and the fact that he can stand up and talk through his pain to help others, is another. I learned quite a bit from Nick’s speech and even more from talking with Jennifer Hall during the weekend.
After Nick Hall’s speech, it was time for me to head to the airport. But, being the earth science (and biology and astronomy) teacher that I am, I could not leave Arizona without a quick hike on one of those beautiful rock formations I had been staring at all weekend! So, I asked the airport shuttle driver to drop me off at one of those formations (A Hole in the Rock) for 30 minutes so that I could hike and collect some rocks to bring home to my students and my four personal rock collectors at home. It was a short (and hot!) trip, but beautiful and well worth it. Soon enough I was on the plane back home to see my four beautiful children, including my own miracle 23 week micro preemie, where I belong.
While I missed them terribly over the weekend, I returned a better person with more connections (more like friends) then I had before that will help me continue to help families of premature babies. I can’t wait to see what amazing new accomplishments we can make together as the Preemie Parent Alliance!
Below are links to other fabulous organizations I did not mention in my post, but can be incredibly helpful if you have a baby in the NICU. Please visit all of their sites and see what they have to offer:
Families Blossoming: a company dedicated to providing coaching-based emotional support to preemie & special needs parents
JF&CS of Boston: their mission is to improve the lives of parents of premature infants throughout New England
gapps: they lead the global effort to improve health outcomes at birth around the world
Hand to Hold: provides comprehensive resources and support programs to parents of preemies, babies born with special health care needs and those who have experienced a loss due to these or other complication
It’s a Preemie Thing: their goal is to help you spend more time with your little ones and less time searching the web for the speciality preemie baby items you’ll need in the NICU and at home
Little Giraffe Foundation: dedicated to supporting neonatal research and helping the parents and patients of the NICU
National Perinatal Association: gives a voice to the needs of pregnant women, infants, their families and their healthcare providers by bringing together stakeholders that collectively can have the greatest positive impact on perinatal care in the United States
Nec Society: a non-profit organization, made up of a diverse group of healthcare practitioners, researchers, and families from across the country who seek to protect premature infants from necrotizing enterocolitis
NICU Helping Hands: provides comprehensive support programs and resources to parents of premature infants, not only during their stay in the NICU but during and after their transition home
Nurtured By Design: the global pioneers in ergonomics and safety engineering specializing in nurturing babies by providing family centered developmentally supportive care and Kangaroo Mother Care for all babies, including those born prematurely or with medical issues
Peek-a-Boo ICU: provides support to parents as they face the emotional journey of the NICU– empowering parents with knowledge, offering support, and encouragement along the way
The Foundation for Prematurity: committed to helping all tiny babies reach their full potential, while supporting parents to successfully navigate life beyond the NICU
Your NICU Baby from The Newborn Channel
Prolacta: the pioneer in standardized human milk-based nutritional products for premature infants in the neonatal intensive care unit (NICU)
Please comment with any other organizations you know of who help families of premature and NICU babies. I would love to have more resources to share!