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 🙂