A Memoir of a Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds
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!
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.
I’m so happy to report that the First Annual Morgan’s FunDay, held on Sunday April 24, 2016- was a success!
HERE is the Press Release about it.
Morgan’s FunDay is a special day of fun and fundraising for The Morgan Leary Vaughan Fund (a nonprofit which I am a member of their Board of Directors) that raises money to treat and prevent Necrotizing Enterocolitis (NEC) in premature and medically fragile babies.
I became involved with them after meeting Stephanie Vaughan (President and Co-Founder of the The Morgan Leary Vaughan Fund) at a speaking event I did in Connecticut, after publishing my book (From Hope to Joy) about my miracle 23 week micro preemie- Joy.
The Morgan Leary Vaughan Fund (AKA “Morgan’s Fund”) was started after Stephanie and Jeff Vaughan delivered premature twin boys (Shaymus and Morgan) and Morgan developed Necrotizing Enterocolitis.
The weather was great!
The adults were able to enjoy the beautiful view of the Mahopac Golf Club while sipping their complimentary drink and the children were able to get fresh air- while watching the magic show, getting their face painted and doing some summersaults and back flips on the tumbling mats.
Photos by © Nick Benson Photography, 2016
Our afternoon started out quite leisurely as everyone trickled in. The DJ had the music playing and the kids started dancing right away. I love to see the kids dance!
After a while, we opened the kids buffet so that they could eat before the magic show began.
The kids started to get excited when they saw the magician walking in and then their eyes lit up even more when they saw the tumbling mats go by 🙂
Five of my high school students volunteered to help for day. They sold raffle tickets, 50/50 tickets, helped check people in, manned the kids craft table, and they also helped clean up.
The mini tumbling was a hit! Thank you to Gym on Wheels of the Hudson Valley for donating your time and mats so that the kids could get some exercise and practice their gymnastic skills!
The kids were sporting some pretty cool designs by our face painter, Aimee. I want to thank her for donating her time and talents so that the kids could have their faces, arms (and some legs!) painted.
I also want to thank Jocko the Magician for giving the kids such a great show. They were laughing and yelling with Joy!
The adult buffet opened soon after the magic show began. The timing was great! The kids were watching the magic show on the patio while their parents watched them through the glass.
Once all of the adults were seated, we began the award presentation and speeches.
After introducing myself, sharing Joy’s birth story and explaining why I got involved with The Morgan Leary Vaughan Fund, I introduced Stephanie Vaughan- President and Co-Founder. Stephanie shared how “Morgan’s Fund” got started and how they use the money raised to support research for the treatment and prevention NEC.
While the children (over 30 of them!) watched the magic show or tumbled around, we had the pleasure to listen to our guest speakers- who have been affected by Necrotizing Enterocolitis in ways that are unimaginable to most of us.
First, Katie and Frank Pedro shared their story. Lucas and Lily Pedro (twins) were born as micro preemies in 2012 and both babies developed NEC. Although the doctors did all that they could, Lily earned her angel wings and now watches over her beautiful twin brother (Lucas) and her parents from heaven.
Next, the Falcone family shared their very personal experience with NEC. Tracey and John Falcone also delivered twins as micro preemies. Their baby girl Mia only survived a few days and their son Anthony lived for 8 months- all of which was in the Neonatal Intensive Care Unit (NICU) at Maria Fareri Children’s Hospital in Valhalla, NY. He suffered from several complications due to his extremely premature birth, including Necrotizing Enterocolitis, and now both Mia and Anthony are guardian angels watching over their brother and sister here on earth .
I cannot thank these families enough for speaking at Morgan’s FunDay. It’s not easy to speak about our most painful experiences, especially losing a child (or children). For a few moments, these parents selflessly let us into their lives so that we could see how devastating premature births and Necrotizing Enterocolitis can be to families.
Both families deserve a lot of credit for sharing their most personal experiences.
Once our speakers were finished, we presented The Lily Pedro Award for Excellence to Dr. Edmund LaGamma of Maria Fareri Children’s Hospital at Westchester Medical Center.
Dr. LaGamma has been published in over 100 research articles related to neonatology and several of them are related to the treatment and prevention of Necrotizing Enterocolitis.
The Lily Pedro Award for Excellence was established to recognize 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.
Dr. Edmund LaGamma is a very deserving recipient of this award. His research and dedication to NEC and premature births is well established and ongoing- and he is Chief of Newborn Medicine in the NICU at Maria Fareri Children’s Hospital at Westchester Medical Center. He is also the reason why my daughter is alive after her extremely premature birth at 23 weeks gestation in 2012.
I was honored to present this year’s award to Dr. LaGamma.
Joy will be 4 years old in a few weeks- and this is thanks to Dr. LaGamma and the other neonatologists and nurses at Maria Fareri Children’s Hospital.
The rest of the afternoon is a blur as it was filled with music, dancing, games and raffles!
The local businesses were so generous- donating over 60 gift certificates and goodies to be raffled off.
We also had three silent auction items to bid on and two large Door Prizes to give away ($500 Foursome to Mahopac Golf and Beach Club and 4 Jim Beam Suite Yankee tickets with private parking!) 🙂
We kept the giveaways, music and games going through dessert and the kids (and many adults!) got to enjoy the “make-your-own” ice cream sundae bar. That was a hit!
So… in conclusion…
It was a great day to raise awareness and money to help treat and prevent Necrotizing Enterocolitis in premature babies and we had fun doing it!
That was my goal.
Every child should have the opportunity to enjoy life, get their face painted, do summersaults and watch a magic show with friends.
Today was about raising money so that more premature babies get that opportunity.
Thank you to everyone who came, donated, or just spread the word.
And a special thanks goes to The Pedro Family, Falcone Family, Dr. LaGamma, The Morgan Leary Vaughan Fund and all of the vendors that donated their time and services to Morgan’s FunDay. They are listed below.
The Falcone Family started a nonprofit to assist families with babies in the NICU. It’s called The Wonder Twins Fund. Please visit their site to learn about how you can help, too.
I hope to see you all (and some of your friends. LOL!) next year 🙂
Thanks again to Brian Williams Events for donating the balloon centerpieces, Aimee Freundich for donating her talent and time so that the kids could have their faces painted, Gym on Wheels of the Hudson Valley for donating their time so that the kids could do some gymnastics, Jocko the Magician for the magic show, Nick Benson Photography for the beautiful pictures, Ryan from Turning Point Entertainment for our music, and The Mahopac Golf and Beach Club for the venue.
Below is a list of the GENEROUS local restaurants and businesses that donated gift certificates, money, or products to support Morgan’s FunDay and Necrotizing Enterocolitis research. Please click on them as a “thank you” to see if you can use any of their services 🙂
Please visit The Morgan Leary Vaughan Fund’s website by clicking HERE to learn more about Necrotizing Enterocolitis and how we are using the monies to research new treatments and preventions.
Please sign up for my monthly blogposts so that you can see what’s going on in the world of prematurity and how you can get involved, too 🙂