A Memoir of a Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds
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 🙂
Happy Mother’s Day to all of the Moms, Step-Moms, Grandmothers, Godmothers, Foster-Moms, Aunts and every woman who has “mothered” a child.
Here are some of my favorite quotes about mothers:
“The moment a child is born, the mother is also born. She never existed before. The woman existed, but the mother, never. A mother is something absolutely new.” ~Rajneesh
“No language can express the power, and beauty, and heroism, and majesty of a mother’s love. It shrinks not where man cowers, and grows stronger where man faints, and over wastes of worldly fortunes sends the radiance of its quenchless fidelity like a star.” ~Edwin Hubbell Chapin
“A mother is a person who seeing there are only four pieces of pie for five people, promptly announces she never did care for pie.” ~Tenneva Jordan
“The heart of a mother is a deep abyss at the bottom of which you will always find forgiveness.” ~Honoré de Balzac
Mothers should be recognized every day for what they do for their children except we don’t want or need the recognition. It’s part of the job we signed up for and we love it. However it’s nice to have the people you love the most in the world share some words of gratitude with you- their mother.
My first child’s first birthday was on my first Mother’s Day! Say that twice fast. Lol! And my last child’s first birthday was on Mother’s Day also. Weird.
My best Mother’s Day memory yet (and I’ve been a Mother for 12 years now!) is Mother’s Day 2012. That is the day that I got to meet my daughter for the first time.
As most of you know, my daughter Joy was born at 23 weeks gestation, weighing only 1 pound and 4 ounces. She was just 11 ¾ inches long.
Not only did I almost lose my life several times during my short pregnancy and again during the surgery to deliver her, but her extremely early birth put her at risk for severe medical issues, including losing her life as well.
Because of the seriousness of both of our conditions after her birth, I was not able to meet her or touch her for a few days. I refused to name her until I could meet her- although the doctors kept telling me that I might never get to meet her.
Well, it was late in the evening on Mother’s Day and I was able to convince a nurse to wheel me down (IVs and blood included) to the Neonatal Intensive Care Unit (NICU) to meet my daughter.
I was only able to stay for 5 minutes because of my condition, but I got to meet her. She opened her eyes (which were meant to be shut for 4 more months) and stared in my direction. They tell me that she could not possibly see me because her eyes were not able to focus yet, but I know she did see me or sense me.
Then I sanitized my hand and was able to stick my pointer finger in the opening in the isolette (incubator). What happened next will stay with me forever. She clasped her tiny little fingers around my finger.
I felt Joy for the first time in months.
That night I called my husband and told him that I wanted to name her Joy.
Anyway… as I write this post today, on Mother’s Day 2017, we are also celebrating my oldest son’s 12th Birthday, which falls on Mother’s Day again.
I would not have it any other way!
Happy Mother’s Day.
Before I go, I would like to mention that Mother’s Day is not as happy for many people as it is for me. We should be sensitive to women who may be struggling today- like those who recently lost a mother, lost a child, or someone who has been unsuccessfully trying to have a child for some time. Let’s all try to be sensitive to those women. Click HERE to see how you can help them.
My micro preemie turns 5 years old today!
Life is certainly different now than it was before Joy was born.
Many people don’t believe that everything happens for a reason- but I do. I recognize that many bad things happen to many good people and that can hurt, but I’d like to believe that those bad things will lead to opportunities for great things, although it may not feel that way at the time.
“I trust that everything happens for a reason, even if we are not wise enough to see it.” — Oprah Winfrey
“Miracles happen every day, change your perception of what a miracle is and you’ll see them all around you.” — Jon Bon Jovi
I also believe that I was granted a miracle. It was not just a miracle that my daughter survived, but it was also a miracle that I am alive as well. So the question became “What will I do with this miracle and how can I become worthy of it?”
Five years ago after delivering Joy at 23 weeks gestation and almost losing my life on four different occasions, I had no plans to become an author or an advocate for premature babies, but the universe kept telling me otherwise. I had little time for much, but I could not suppress the feeling that I had to use our story for something greater. I felt I needed to share both our pains and successes with the world so that other families could benefit from learning about what we went through. This is what led me to become a writer, blogger, speaker, and advocate for premature babies and their families.
My sweet little “Baby Joy”, as most family members call her, is not a baby anymore. Although the road to her 5th Birthday has been quite bumpy, we are so happy we decided to take the journey.
Joy has been just that to everyone in her life. She is funny- laughing at all of her own jokes. She loves to sing, dance, and dress up like a princess each day, but she also loves to play any game involving swords and any other toys her brothers like to play with.
Look at her now! Joy was born at 1 pound and 4 ounces and was just 11 3/4 inches long. She spent 121 days in the NICU- most of which were painful and uncertain. Today she suffers from some lung issues (Bronchial Pulmonary Dysplasia) but is otherwise perfectly healthy and loves life.
Joy has taught us all to be more patient and tolerant than we may have been otherwise. She has taught us all to love unconditionally and live our lives to the fullest.
Joy has taught me a few more lessons- some of which I never would have learned without her:
These are lessons that I hope to instill in my children as they grow.
As I’m sitting here tonight writing this blog, I cannot help to imagine how different life would be today if I was not granted the miracle of Joy.
But I was.
Happy 5th Birthday to my Preemie Princess!