A Memoir of a Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds
World Prematurity Day is coming up!
November 17 is World Prematurity Day (WPD), a chance to raise awareness about the topic of prematurity on local, national and international level.
One in ten babies are born premature. That’s over 15 million babies being born too early each year.
How did World Prematurity Day start?
EFCNI (European Foundation for Care of Newborn Infants) initiated the first meeting of the European Parents’ Organization in Rome, Italy in November 2008. During this meeting, the representatives decided to create an awareness day for preterm infants and their families. November 17th was chosen because this day has a very special and emotional meaning for one of EFCNI’s founders: After the decease of his preterm triplets in December 2006, he became father of a healthy born daughter on November 17th 2008. At the same time- the March of Dimes in the United States had a similar idea and launched Prematurity Awareness Month in November.
World Prematurity Day has been growing and spreading awareness ever since.
There are many different organizations hosting events in honor of World Prematurity Day and National Prematurity Awareness Month.
If you are on Facebook, please check out the World Prematurity Day page where you can learn what’s going on.
Also, visit the EFCNI website where you can get great advice on what you can do to support World Prematurity Day and even get templates and toolkits to help you support it.
Preemie World is a wonderful organization that highlights all things related to premature births and they will be sharing all kinds of great stories and ideas to help you support World Prematurity Day.
On a local level, here are some things I am doing in honor of World Prematurity Day:
1. You can gift a copy of my book (From Hope to Joy: A Memoir of a Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds) to a preemie parent or even send an autographed book to a NICU. Click below to learn more. I’ll even wrap it in purple paper for you.
Click here to view the offer: http://micropreemie.net/gift-a-book/
2. Give a gift of hope to a parent of a premature baby. Below is a $5 discount code you can use to purchase my book (From Hope to Joy: A Memoir of a Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds) throughout the month of November.
Website link: https://www.createspace.com4347606 Use code: 6P9FLKVU
3. An Affair to RememBeer at Two Roads Brewing Company in Stratford, CT.
On November 13th The Morgan Leary Vaughan Fund is hosting a fundraiser which includes beer tasting, brewery tours, hors d’oeuvres, live music, raffles & a silent auction. All event proceeds will go directly to supporting our Natural History Registry for Necrotizing Enterocolitis (NEC). NEC is a deadly disease of the intestines that effects premature babies.
I’m proud to say that I am a member of The Morgan Leary Vaughan Fund’s Board of Directors and they do great work!
Click HERE to purchase tickets or donate:
4. I’m speaking at the NANN (National Association of Neonatal Nurses) Conference in Palm Springs, CA on October 29th. I’m discussing what did and did not help me, as a preemie parent, at the time of NICU discharge. I’ll be writing a post on this in early November.
5. I’m exhibiting at the PPA (Preemie Parent Alliance) Summit in Falls Church, VA during the first weekend in November. More on this this to come…
Even if you can’t attend an event or donate to a nonprofit in honor of World Prematurity Day- you can still put purple lights on your front porch to show your support.
And if you do light up your house in purple, please tag me in your posts by using @jenniferdegl. I would love to see your photos.
How are you celebrating World Prematurity Day and why do you celebrate it?
Here’s why I celebrate World Prematurity Day:
IT’S BEEN 4 YEARS SINCE MY MICRO PREEMIE CAME HOME FROM THE NICU!
Today is a special day for our family. It’s difficult to believe that 4 years has already passed since that beautiful (and frightening!) day when Joy was released from the NICU.
She (actually all of us) has grown so much in the past few years and I’m not just talking about her size. Joy has become her own person. Obviously she was always her own person but she has developed her own personality. She tettertots between a princess (and she even wears a tiara on most days!) and a tomboy- as she plays with her three big brothers as if she were a knight or Jedi fighter. Although they always include her in their play, they also always treat her like the princess that she thinks she is.
Life has gotten dramatically busy this year, as her brothers are now engaged in more activities and sports, and even Joy started to take dance classes- which is why my writing has been reduced to a crawl. But a lot of the reason that I have not been writing very much is because we have all been healing. It took almost 4 years for it to happen, but we are all finally coming to terms with my life threatening pregnancy and death scares and Joy’s very early and very dramatic birth at 23 weeks gestation.
Her premature birth was caused by a condition called placenta percreta (a severe type of placenta previa)- a condition that caused my placenta (the organ that’s supposed to keep my baby safe and provide her with nutrients) to grow through my uterus and attach to both my bladder and bowels. It caused us both to almost lose our lives.
So, it was 4 years ago today (September 9, 2012) that my miracle micro preemie came home from the NICU. Joy Margaret Degl spent 121 days at Maria Fareri Children’s Hospital and grew from 11 ¾ inches and her preemie birth weight of 1 lb. and 4 oz. to her discharge weight of 7 lbs. and 9 oz.
A few days before her discharge, Joy had a choking episode which caused her to stop breathing and turn blue. Although I had just taken the infant CPR course offered by the hospital, I still froze when she choked. Joy’s nurse stepped in and got her to breathe again and I just watched. Because of this I took the infant CPR class again the next day!
September 9, 2012 was filled with mixed emotions. Of course we were all excited to have Joy come home and join our family, but we were also very nervous about the amount of special medical care and numerous appointments that our preemie may require. But most of all, I had gotten very used to the comfort of knowing that a doctor or nurse was always available to check on Joy and make sure that she was okay. That comfort was now being removed and I now had to rely on my husband and myself only. That was scary!
Joy would go on to have a visiting nurse come to our house 3 days a week to check her breathing and weight because she needed to avoid the germs at the regular pediatricians office. She began Physical Therapy and other various interventions which were all done at our home throughout the course of each day, as her brothers were sitting in school.
We needed to see the gastroenterologist on a biweekly basis because of her acid reflux and trouble with digestion. Joy was closely followed by a pediatric ophthalmologist because she was diagnosed with ROP (Retinopathy of Prematurity) and the list goes on, but let’s return to the feelings on discharge day- 4 YEARS AGO!
In addition to being nervous, I had become VERY close to many of the bedside nurses that took care of Joy. Most days involved me going to the hospital between 9 am and 3 pm, while the boys were in camp and then going back at night between 9 pm and 1 am again while the boys slept. Because of this, I got to know both the day and night nurses and I was going to miss them. That may sound strange, but these women became my social life. I knew more about which ones were redecorating their houses or what their children had for breakfast than I knew about my own friends and extended family. Now all of this was being taken away from me.
On the morning of discharge, Joy’s brothers were eagerly anticipating our arrival. My in-laws and my parents had helped them make beautiful signs and cards and helped them hang balloons both inside and outside of our home. It looked absolutely beautiful and it was a surprise to both my husband and me.
We were so blessed that Joy did not come home on oxygen or require any other medical equipment and she was returning home one week after her actual due date, just as if she were a regular newborn. One would never know the difference- unless you saw her daily medical and intervention schedule.
September 9, 2012 was filled with some laughing and crying, but mostly excitement about our future. After saying goodbye to our home of the last four months (the NICU), we entered a new phase of our lives in our actual home. Joy slept in her car seat during the entire trip home in the car and then for a little bit more when we got in the door. We put Joy’s car seat, with Joy asleep in it, on the dining room table after we got home and we all stood around it staring at her until she woke up. Joy was home and everything was as it should be!
The first 1-2 years post NICU is a big blur. I mostly remember the constant appointments and stress over hand sanitizing, limiting the visitors to our home, Joy’s 5 bouts of pneumonia (now it’s 8), and the fear of her not surviving her first year of life- or the thought that she may have so many developmental delays that she may never enjoy her life. But in the mix of all that, I have memory flashes of the first time she rolled over and crawled, the first time she walked (Christmas Eve 2013 at 19 months old), the first time she kissed me and how her brothers would hold her and sing to her.
Wow, our life today is so different than it was just 4 years ago!
Although Joy’s entrance into this world was such that I would not wish it on anyone else, I am so blessed that she entered just as she did. Since her birth my 3 boys have learned how to be compassionate and patient (although they slip from time to time like us all!), and I have found a new passion. I have begun to spread awareness about the realities of premature births and life with a preemie and very much enjoy speaking to and on behalf of premature babies and NICU families across the country.
In late October I’m honored to be speaking at the NANN (National Association of Neonatal Nurses) Conference in Palm Springs, CA and then I’ll be off to the PPA (Preemie Parent Alliance) Summit in Falls Church, VA.
Thanks for your support and for following Joy’s journey and my writing over the last 4 years!
We both thank you.
On Wednesday, June 22nd I spoke at the Cannon House Office Building In Washington D.C. to encourage Congress to support a bill called H.R.5182, nicknamed The Support the Promoting Life Saving New Therapies for Neonates Act.
The goal was to highlight the dire need for innovation for the American newborn population. I was joined by a panel of experts with unique backgrounds and experiences in “preemie” health, who discussed these issues with the hopes of a bipartisan House solution that may someday save thousands of young lives.
Our expert panel consisted of Dr. Jonathan Davis (Chief of Newborn Medicine and Professor of Pediatrics at Tuffs University School of Medicine), Dr. Christina Bicci-Rechtweg (Head of Pediatric and Maternal Health Policy at Novartis Pharmaceuticals), and Allyson Kayton (Nurse Practitioner and member of NANN and NANNP). We spoke for over an hour to a room of top congressional staffers about the details of bill and the compelling reasons to support it.
After the briefing was over, we each had appointments with some members of Congress from our home states so that we could discuss the bill in a more personal fashion.
So, what’s the problem that H.R. 5182 is trying to address?
Annually, approximately 200,000 newborns in the United States require admission to a neonatal intensive care unit for treatment of prematurity. Prematurity is the leading cause of newborn mortality and the second leading cause of infant mortality. Among those who survive, one in five faces health problems that persist for life such as Cerebral Palsy, intellectual disabilities, Chronic Lung Disease, Short Bowel Syndrome, blindness and deafness. But unfortunately, current incentives have not been sufficient to stimulate novel therapies for the neonatal population, due to numerous challenges.
Few drug-labeling changes have included neonates (premature and full term infants up to 28 days of age); and the last new drug for neonates was approved in 1999.
Many of those who follow my story are already familiar with my personal journey with prematurity.
My daughter was born at 23 weeks gestation in 2012 and weighed just 1 pound and 4 ounces at birth. She was only 11 ¾ inches long.
After a long and difficult 121 day NICU (neonatal intensive care unit) stay, my daughter was released from the hospital to our care.
Although she is doing amazingly well at 4 years old, she has Bronchial Pulmonary Dysplasia (BPD) or what is commonly called Chronic Lung Disease. Her lungs are primarily scar tissue because that is how they formed due to the several months of a breathing tube and ventilator forcing her tiny lungs to open and shut, because she could not breath on her own.
This scar tissue and Chronic Lung Disease are what causes her to get frequent pneumonia after having a common cold.
She has had pneumonia 8 times throughout her short 4 years of life and she will likely continue to get it when exposed to foreign respiratory viruses or the runny noses of other children.
Wouldn’t it be wonderful if a new drug was developed that could somehow coat the lungs of premature babies so that they do not develop scar tissue and the future premature babies of the world would not have to suffer with Chronic Lung Disease for the rest of their lives, as my daughter does?
Wouldn’t it be wonderful if a new drug could be developed to prevent the immature intestines of premature babies from getting infected, causing a deadly disease called Necrotizing Enterocolitis (NEC), and the future premature babies of the world would not have to suffer major surgeries and loose their lives due to NEC?
I think so, and I hope you do too.
Many people don’t understand that a premature baby is not just smaller than a full-term baby. Premature babies have immature body systems with a totally different body chemistry than full-term babies. What this means is that because they were not meant to operate in the outside world for a while, they work differently and medications used to treat pediatric and full-term babies do not metabolize the same way in a premature baby. Many drugs don’t work as well or they have different negative side effects in premature babies, because of the immature body systems and different body chemistry of babies born far too early.
Also, the most debilitating conditions and diseases that afflict premature babies do not have an adult counterpart to study, because they are unique to neonatal patients. Therefore, the common practice of “dosing down” a medicine to a smaller weight, which is used to treat a “similar” pediatric or adult disease, does not work well because the diseases of neonatal patients are not the same.
Today, I am calling on you to write to your local member of Congress to encourage them to support the bill. Please click HERE to do it.
It’s so important. The need is there and the population of babies surviving extremely premature births, like my daughter did, is only increasing.
We need new drugs to help prevent these tiny babies from living with debilitating conditions and diseases for the rest of their lives.
They deserve that.
So, please write to your local member of Congress today by clicking HERE.
As always, thank you for your support!
I can’t believe that my sweet little 1 pound Micro Preemie Warrior is now a 4 year old- 30 pound Preemie Princess!
And she is a Princess- just ask her brothers…
Joy and I have big afternoon plans so I will keep this short and sweet.
As most of you know, my pregnancy was much too short and Joy’s birth was anything but sweet, but today we have a lot to celebrate.
Some might view May 12, 2012 as the worst day of my life — and it was– until it wasn’t!
That day sure seemed like it was the worst day of my life — and possibly the last– and it could’ve also been the only day of Joy’s life– but it wasn’t that either.
We are here!
And here we are!
I can’t say that it was easy to get where we are. We both had some medical and mental issues (well the mental part was just me. Lol!) to overcome, but we did it!
Life is good and we have made it through another year.
Joy is 4 years old now!
Sometimes I wish that I could go back in time so that I could really cherish all of those beginning moments of her life, and then I realize that those moments were not very easy to live through the first time around.
So now, I just look forward to the Joy’s bright future as a ballerina (she has her first dance class in two weeks!), a baby doctor (as she calls it) or an ice cream maker.
The fact that she is alive to have those dreams, and that I am alive to listen to them, is a blessing. We were both meant to survive and do great things- whatever they may be.
Happy Birthday to my sweet Baby Joy, as everyone once called her.
Your name is still as fitting as the day you got it.
Happy Mother’s Day to all of the Moms, Step-Moms, Grandmothers, Godmothers, Foster-Moms, Aunts and every woman who has “mothered” a child.
Today is a day where you should be recognized for all that you do, although none of us ever really ask for recognition.
Here are some quotes about Mother’s that I enjoyed to read and I hope you will like them too!
“The phrase “working mother” is redundant.” ~Jane Sellman
“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
“When you are a mother, you are never really alone in your thoughts. A mother always has to think twice, once for herself and once for her child.” ~Sophia Loren, Women and Beauty
Mother’s Day has always been very special to me since I had my first child, and not just because I became a mom.
My oldest son was due around Mother’s day and arrived a few days after, but during dinner at a restaurant on Mother’s Day (with a very large pregnant belly), our waiter wished me a Happy Mother’s Day and gave me a flower while he gave one to my mother, and at that moment I first felt like a MOTHER. I had not felt like a mother yet and thought that I shouldn’t celebrate until I actually had by baby, and this waiter gave me the gift of feeling like a mother- for the first time. Sean was born 5 days later.
Sean’s first birthday was on Mother’s Day! My first Mother’s Day celebration with a baby to celebrate with- happened to be my first son’s first birthday, too. That was a special Mother’s Day.
Fast forward to May 2012.
Joy was born extremely premature at 23 weeks gestation and due to my own surgical complications I was unable to meet her for a few days.
After begging and pleating with the SICU (Surgical ICU) nurse in charge of my over- night care, I convinced her to help me into a wheelchair (IV and transfusion bags attached) and she pushed me into the NICU (Neonatal ICU) so that I could see my daughter for the first time since her birth.
She was not expected to live.
I had to meet her but was not stable enough to leave the SICU yet.
This wonderful nurse snuck me past the over-night staff at what was very close to midnight- on Mother’s Day- and I got to see my daughter for the first time.
It was only for two minutes, but I got to finally meet my daughter and see that she was alive, and that was the best Mother’s Day gift I have ever gotten.
Oh… ironically, Joy’s First Birthday was also on Mother’s Day the following year.
So, my first child’s first birthday was on Mother’s Day and my last child’s first birthday was on Mother’s Day, too. Weird, right?
As you can see, Mother’s Day has so many special reasons for me to celebrate and that is what I plan to do- with my children, mother-in-law and my mother, too.
Happy Mother’s Day to you all!