A Memoir of a Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds
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.
Last weekend I had the honor and pleasure of being a Keynote Speaker at the 32nd Annual NANN Conference.
NANN stands for the National Association of Neonatal Nurses.
The conference was held in Palm Springs, California at the Renaissance Palm Springs and the weather was beautiful. But what was more beautiful were the NICU nurses I got to meet and spend time with.
For those of you who don’t know what NICU means- it’s the Neonatal Intensive Care Unit. This is where my daughter, as well remainder of the 10% of babies born prematurely every year, spend their first few weeks or months of life.
Before I discuss what I was speaking to them about, I want to explain what special people these NICU nurses are. These women (and some men, too!) not only help the neonatologists resuscitate our babies and keep them alive immediately after their premature births, but they do so much more.
According to study.com, the duties of a NICU nurse include administering medications, monitoring vital signs and providing vital nutrients to newborns. Because most premature and sick newborns’ lungs are not fully developed, NICU nurses must ensure that infants are breathing and maturing properly. These specialized nurses work with upper-level nurses and neonatologists and assist in treatment plans and examinations. They also keep, maintain and update records of the patient’s care. In addition to medical care, NICU nurses communicate with and educate parents on day-to-day operations as well as home-care procedures.
I can tell you that description only scratches the surface of what NICU nurses actually do for babies and their parents.
These angels on earth, as I like to call them, will hold our babies if we cannot be there; they will comfort them when they cry; they will sing to our babies to put them to sleep; as well as bath them and change their diapers- tasks that we wish we were doing ourselves, but are all too often not able to do because of our baby’s fragile (and often our own) medical conditions.
Most NICU nurses go above and beyond to make sure our babies are safe, happy and thriving. And NICU nurses often become our baby’s advocates when necessary- as far as the medical plan goes.
This is why it was an honor and privilege to be a Keynote Speaker at their conference.
Four years ago, after delivering my own premature baby at 23 weeks gestation, I was thrown into an unknown world of neonatal care. The NICU nurses soon became my teachers, friends and family.
We were tasked with sharing our own personal NICU experience and then offering advice on how the NICU nurses could make the discharge process emotionally easier on parents and how nurses can best help the parents prepare for discharge.
Both Natalie and Kara have their own journeys with prematurity and you can visit their websites (linked to their names above the photo) to read about them. They are two of the most beautiful women I know and I am lucky to have shared this experience with them. I’m in awe by their strength and determination!
Our Keynote Closing Session began with the President of NANN (Jean Grazel) discussing the importance of the parents in the NICU process. Jean Grazel is a certified advanced practice nurse with more than 30 years of neonatal nursing experience. She holds several clinical designations, including board-certified high-risk perinatal nurse, neonatal resuscitation program regional trainer, NANN neonatal developmental care specialist, and certified breastfeeding counselor. You can read all about Jean by clicking HERE. Then Heather Goodall (MSN, RNC-NIC, IBCLC) set the stage for our presentation and read each of our biographies to the audience. Heather also moderated the question and answer session at the end of our presentations. You can see the general outline for our presentations by clicking HERE.
What touched me the most was that all of these NICU nurses put aside time in their day and made it a priority to come to watch us speak- the parents of NICU babies. We (the parents) owe everything to these people and have the upmost respect for them- and yet they wanted to listen to us speak and offer them advice on how to help us more.
Overall, my experience as a Keynote Speaker at the 32nd Annual NANN Conference was both amazing and humbling. I got to share the stage with two other beautiful and strong NICU mammas, and I got to see first- hand how these NICU nurses really want help the family as a whole. They are not only concerned with saving and caring for our premature and medically fragile babies, but they also want to make sure that we all leave the NICU with as little bruises as possible.
There is no way to leave the NICU unscathed by our experiences after watching our babies (and often ourselves) endure so much pain and suffering, but I learned that the NICU nurses are always looking for newer and better methods to minimize it for us all.
Once again, NICU nurses are angels on earth!
Oh, and since I was in Palm Springs for the weekend, of course I took in some of the local sites! What kind of science teacher would I be if I didn’t visit the San Andreas Fault, Joshua Tree National Park and the mountains of San Jacinto State Park?
It’s a rhetorical question. Lol!
But seriously, if you have a story to share about a NICU nurse going above and beyond to make sure you have the best NICU experience and discharge possible, I would love to hear it. I have SO many!
Please share in the comments 🙂
Below is the reason I feel so passionate about raising awareness about premature births and NICU life.
Thank you your support!
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!