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 🙂
The 35th Annual Regional NICU (Neonatal Intensive Care Unit) Reunion was held on September 13, 2017 and it was a great afternoon! It was Joy’s 5th NICU Reunion!
It’s so wonderful to watch as families play with their little miracles who are all alive today because of the excellent care they received at Maria Fareri Children’s Hospital at Westchester Medical Center.
As usual, we set up our table-, which allows us a perfect spot to park and wait for parents to stop by and say hello and share their own NICU success stories.
The rain held off until we were just about to take our group photo- but we managed to get the photo in before it started to pour- and the rain only lasted a few minutes.
Besides meeting new families and learning their NICU success stories and running into some of our own NICU friends, we also love to meet up with Joy’s former Neonatologists and NICU Nurses.
All of Joy’s doctors and nurses became like a second family to us and every year we get to hang out with them and catch up. This is my favorite part of the reunion.
As you can tell in the photo below- Joy believes this event is just for her and all of the other people show up to celebrate her.
She calls this HER hospital each time we pass it on the highway and she loves to go back and visit. This might be because everyone makes such a fuss when we walk in the door and she never leaves without at least five lollypops 🙂
We can’t wait until next year’s NICU Reunion.
My baby came home from the NICU 5 years ago TODAY!
The days leading up to today have been very busy- but they have still allowed time for appreciation and reflection.
It’s difficult to feel so lucky as millions of people are dealing with terrible winds and flooding from Hurricanes Harvey and Irma. They are all in my prayers.
Below is what I wrote last week as I’ve been anticipating this 5 -Year NICU Anniversary and what it means to me:
Why Autumn is My Spring
The season of Spring symbolizes new life and new beginnings for many people, but for me it’s different.
Autumn is my Spring.
For me (a teacher)- the beginning of Autumn means a fresh start to a new school year and also the beginning of my life with my daughter.
My daughter Joy was born 17 weeks early as a micro preemie in May of 2012. She weighed just 1 pound and 4 ounces at birth and was only 11 ¾ inches long. After spending 121 days in the NICU (Neonatal Intensive Care Unit), she came home to join our family on September 9th 2012.
That was the day that my family became complete. All of our fears and sadness began to dissipate on that September day- 5 years ago today!
My boys made signs and banners and our family filled our house with balloons. It was a celebration of a new start.
Prior to her birth, I stood a very high chance of losing my life to Placenta Percreta (and I almost did on four different occasions), and I was hospitalized for several weeks because of it. Joy was also very likely not to survive her extremely premature birth.
We are both survivors.
The first four months of my daughter’s life is still a bit of a fog. I believe that I was going through the motions of what needed to be done to keep my family from falling apart, although I can’t remember much of what was going on outside of the NICU.
I was in function mode.
Joy’s extremely premature birth not only caused her to deal with a plethora of serious medical issues, but it also left me very sick and my three other children without a full-functioning and available mother for several months.
But, that all began to change in the fall of 2012.
September 9th marks the 5-year anniversary of the day my rock star micro preemie came home from the NICU.
That day will be burned in my memory forever.
It was almost like the day I gave birth or the day when a new mother brings home her healthy new baby- a feeling of a new beginning and a fresh start.
I would give almost anything to have had a “regular and full-term” delivery and have that be the way my daughter joined our family after a three day hospital stay- and to somehow be able to remove all of the pain and suffering she endured during her four months in the NICU.
I would give almost anything to be able to have those precious months back with my other three children and to not have the memories and guilt of leaving them and “choosing” to be by my daughter’s side while she was stuck in a human incubator designed to keep the rest of the world away.
But that is not what happened to us and we must make the best of what happened.
I cannot believe that today is the 5-year anniversary of my daughter’s NICU homecoming. In many ways it seems like yesterday, yet in many ways it also seems like an eternity ago.
I’m curious if any other preemie or NICU parents feel the same.
Do you remember your baby’s discharge date as I do?
Do you also feel as if it’s a day to commemorate your child and celebrate their strength and will to live?
Today- Joy is a happy and healthy (with some minor medical issues caused by her premature birth) little girl and she also loves the fall!
Autumn will always symbolize strength and new beginnings for our family- and there’s no better season to take commemorative photos in places like apple orchards, pumpkin patches or just over a pile of leaves.
Happy 5 –Year NICU Homecoming to Joy and our family and Happy Fall to you!
A fresh start can be good for us all.
You can find a similar post I wrote for The Mighty called
The 2nd Annual Morgan’s FunDay to fight Necrotizing Enterocolitis in premature babies was on Friday June 23rd and it was a huge success!
We were supposed to have the party on the beach but Mother Nature had different plans for us and we moved the party inside. Our guests didn’t seem to mind at all and were all happy to be in the air-conditioned ballroom and not outside in 97% Relative Humidity!
We had such a great day!
Over 50 adults and close to 40 kids came to help support our cause.
Necrotizing Enterocolitis (NEC) is an infection that inflames part of a baby’s intestines. This disease, which can often require surgery to remove damaged sections of intestine, often develops two to three weeks after birth, but can occur later. “Necrotizing” means damage and/or death of cells, “entero” refers to the intestine, and “colitis” means inflammation of the colon (lower part of the intestine). This occurs predominantly in premature infants. The mortality rate of babies who require surgery to treat NEC can be up to 50%.
The Morgan Leary Vaughan Fund is a nonprofit dedicated to raising awareness about Necrotizing Enterocolitis and the money raised goes towards research into treating NEC and preventing future premature babies from losing their lives to this terrible disease. I am a proud member of their Board of Directors. Click HERE to read how Morgan’s Fund was founded and learn of the amazing NEC survival story of Morgan Vaughan and how that inspired his family to start a nonprofit.
I got joined The Morgan Leary Vaughan Fund a few years ago because I know that my daughter is alive today due to the type of research they support. My daughter Joy was born at 23 weeks gestation in 2012 and weighed just 1 lb. 4 oz. (575 grams) and was only 11 3/4 inches long. She spend 121 days in the Neonatal Intensive Care Unit (NICU) at Maria Fareri Children’s Hospital at Westchester Medical Center and is now a happy and healthy 5 year old.
The Mahopac Golf and Beach Club and their excellent staff helped us plan a great event and this allowed our fundraiser to go off without a hitch despite the fact that we had to move inside because of rain.
The highlight of the afternoon was the award presentation. I was honored to present The Lily Pedro Award for Excellence to Dr. Boriana Parvez of Maria Fareri Children’s Hospital at Westchester Medical Center. Dr. Parvez has been practicing neonatology for close to 30 years and she has recently been instrumental in helping establish The New York Milk Bank. She has even been to Albany urging New York State to pass legislation requiring them to pay for donor breast milk for extremely premature babies whose mothers cannot produce enough- and the legislation passed!
Established in 2016, the Lily Pedro Award for Excellence award recognizes individuals or organizations who exemplify the mission, vision, and ideals of The Morgan Leary Vaughan Fund. It is named in memory of Lily Marie Pedro, infant daughter of Katherine and Frank Pedro, who lost her battle with NEC in 2012.
Quite a few NICU staff members from Maria Fareri Children’s Hospital attended our event to support our cause and to congratulate Dr. Parvez. Members of The New York Milk Bank also came to do the same. It was wonderful to have them all there!
(Members of The New York Milk Bank)
I am truly humbled at the number of people who donated their time and services to make our event so special!
When our guests arrived they entered a room adorned with purple and white balloons donated by Billy Perillo of Brian Williams Event Decorators in Jefferson Valley, NY. Each flower centerpiece was hand made and donated by Louise Ladden. Ryan Michael from Turning Point Entertainment donated his time and equipment to provide entertainment and act as our Master of Ceremonies for the afternoon. Zippy the Clown put on a fabulous show for the kids on the patio while the adults ate and listened to a few speeches and he kept them occupied with balloon animals so that we could have our awards presentation. Jennifer Lynn Photography donated her time and expertise to take professional photos for us throughout the event. Aimee Freundich volunteered to be our face painter and she did an excellent job creating all sorts of artwork on the faces, arms and legs of the kids. And I have to thank the 11 students from Mahopac High School who volunteered their time to help me check in our guests and sell raffle tickets. My students and their kind hearts always blow me away.
Putnam and Westchester Counties have some very generous business owners. We had over thirty donated gift certificates to local restaurants and other establishments that we were able to raffle off along with our four silent auction items!
Because of their generosity and willingness to help us save the lives of premature babies- I would like to list names of the businesses that donated with the hopes that you consider visiting them or using them for your future needs.
So- if you’re looking to take your family out to eat in Putnam or Westchester Counties- please consider visiting The Melting Pot, Arturo’s Tavern, Mike and Joes Wood Fired Pizza, Kobu, Cacciatori Pizzeria, Uncle Louie G’s, Café Piccolo, Ramiro’s 954, il Laghetto, The Chophouse Grille, La Familia Felice, Frankie & Auggie’z, La Valetta Pizza and Pasta, Benevento’s, Rick’s Seafood, Char Steakhouse and Bar, or Three Boys from Italy.
I would like to give a shout out to Fraser’s Hardware, The Pied Piper Theater, The Yorktown Stage, The Paramount Theater, The Carmel Cinema, Regal Theaters, Legoland of Westchester, Lake Compounce, ARMY Football at WestPoint, Six Flags New England, The Bronx Zoo, The Beardsley Zoo, The Mystic Aquarium, Dorney Park, A Touch of Beauty, Cozy Nails and Red Mills Market for their donations as well. I also want to thank Terrance Hughes and Billy Ashford from The Pro Shop at The Mahopac Golf and Beach Club for donating a new Titleist golf bag and a 1 hour gold lesson. All of these donations helped us raise the necessary money so that we can support research into Necrotizing Enterocolitis.
The 2nd Annual Morgan’s FunDay was not only a fun afternoon for all who attended, but it raised almost double the amount that we raised last year!
Thank you to everyone who attended, donated money, donated a raffle or auction item, or shared our vent with someone else.
I am blessed to have my premature baby to hug and kiss each night and I’m honored to be a part of The Morgan Leary Vaughan Fund.
All of the money we raised at the event will go to the doctors and scientists who research better ways to treat and ultimately prevent NEC in premature babies.
Please check back to www.micropreemie.net and www.facebook.com/jenniferdegl to see what we are up to next and what we are doing to advocate for and spread awareness about premature babies and their families.
Have a great summer!
The Degl and Vaughan Families
Join me on Friday June 23rd from 4 to 7 pm at Mahopac Golf and Beach Club for some fundraising in the Sun at Morgan’s FunDay!
We are having a BEACH PARTY!
Morgan’s FunDay is sponsored by The Morgan Leary Vaughan Fund and our proceeds go to the doctors and scientists who are researching ways to better treat and prevent Necrotizing Enterocolitis in premature babies.
Necrotizing Enterocolits (NEC) is a devastating disease that can take the lives of up to 50% of the premature babies who develop it. That is unacceptable to us at Morgan’ Fund and we are trying to do everything we can to stop it.
You all know that my daughter Joy was born 17 weeks early in 2012 and we know that she is alive today because of the wonderful care she received a Maria Fareri Children’s Hospital and research like this.
The Morgan Leary Vaughan Fund is named after Morgan- who lost a large portion of his intestines due to developing NEC soon, after his premature birth. Morgan is thriving today because of this research.
So… what are we doing at the beach?
We’ll have lifeguard supervised swimming in beautiful Lake Mahopac, a dinner buffet, desserts, an adult bar, ice cream bar and several fun activities.
Our activities (besides swimming!) include a DJ, games, crafts, face painting, a clown show, balloon animals, and we’ll have raffles galore!!!
Check out some of our raffle items:
Over 30 restaurants from both Putnam and Westchester have donated gift certificates so that we can raffle them off along with many gift baskets.
We also have some amazing auction items- such as 4 Total Experience Bronx Zoo Tickets & 4 Beardsley Zoo tickets, 4 ARMY Football Tickets, a Foursome to Mahopac Golf and Beach Club and more.
And your ticket automatically enters you into the Door Prize raffle for a brand new golf bag- donated by the Pro Shop at Mahopac Golf and Beach Club, and it comes with a 1 Hour Golf Lesson with the Club Pro- Billy Ashford! Plus, each adult gets one FREE DRINK ticket to use at the bar and each child gets a coupon for a FREE MEAL at Chili’s!
I’m honored to present Dr. Boriana Parvez of Maria Fareri Children’s Hospital with this year’s Lily Pedro Award for Excellence for her work in helping to establish the New York Milk Bank. The award is named after Lily Pedro- the sweet little girl who lost her life to NEC.
So pack your bathing suit and grab your sunscreen and get your tickets today by clicking HERE.
You can click HERE to check out some photos of last year’s event:
We’ll see you on June 23rd! Oh, and spread the word! The more people who come- the more money we can raise for research!
Thank you 🙂