A Memoir of a Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds
Sunday May 7th was the Go the Distance Walk and Family Fun Day to raise money for Maria Fareri Children’s Hospital. Although it was a bit chilly, we were so happy that it didn’t rain like it did last year!
Maria Fareri Children’s Hospital is a member of the larger Westchester Medical Center. They are a pediatric hospital committed to providing the most advanced care available to more than 20,000 critically ill infants and children each year. It’s the embodied vision of hundreds of parents, medical professionals and community leaders who had a fervent desire to create a “family-centered” children’s hospital where parents are not visitors but partners, and where the unique creative surroundings are an integral part of the healing process. They have that down pat!
What makes Maria Fareri Children’s Hospital so unique?
That’s why we walk and that’s where the donations go!
Team From Hope to Joy had a Superstar Tent and a pretty good turnout. Unfortunately the walk fell on the same day as family Communion, so we had a few less people than normal, but that didn’t stop us!
The walkers were treated to bagels, donuts, granola bars, water, juice and coffee both before and after the walk.
There was a huge bubble truck cranking out bubbles for the kids to run through and pop; two bounce houses, and a tent with games with prizes!
Also, there were a few princesses and Star Wars characters walking around for photo ops.
Many members of Westchester’s Iowa Style Wrestling club showed up to walk with our team and support the hospital. Thanks guys!
Team From Hope to Joy raised over $4500 for the hospital and we hope to continue to support them at the walk each and every year. Visit our team page by clicking HERE.
We were the #5 on the Top Teams list. Check it out HERE:
It just so happens that May 7th was also Parents of Preemies Day- a day started by Graham’s Foundation to show support for the parents who love and nurture the premature babies of the world. You can read more about Parents of Preemie’s Day by clicking HERE.
Click HERE to read about and see some pictures of last year’s walk.
You can still donate for another week or so by clicking on our Team Page.
Thanks for your support and we hope to see you at the 2018 Go the Distance Walk and Family Fun Day.
I recently had the honor and pleasure of participating in the 3rd Annual FDA-INC Neonatal Scientific Workshop in Bethesda, Maryland.
My role, as co-chair of the Communications Workgroup, was to plan and execute a 90 minute Breakout Session entitled “Communication Strategies to Promote a Research Culture”.
Christina Bucci-Rechtweg (a pediatrician by trade who now works for Novartis Pharmaceuticals) was the other co-chair and I could not have asked for a better partner. Christina and I have known each other for a little over a year and I have had the pleasure of speaking with her on Capitol Hill on two different occasions (both addressing the Senate and the House of Representatives) on behalf of S.2041 and H.R. 5182. Christina is brilliant and hard-working and was instrumental in planning our Breakout Session activities.
But before I get into what our session was about and what we accomplished, I’m betting that you would like to know what INC and C-Path are and what the goal of the 3rd Annual FDA-INC Neonatal Scientific Workshop actually was.
C-Path (Critical Path Institute) was founded in 2005 in Tucson, Arizona, and is an independent, non-profit organization dedicated to bringing scientists from the FDA, industry and academia all together to collaborate and improve the drug development and regulatory process for medical products.
INC (International Neonatal Consortium) launched on May 19, 2015, and is C-Path’s ninth consortium – a global collaboration formed to forge a predictable regulatory path for evaluating the safety and effectiveness of therapies for neonates.
“By uniting stakeholders from research institutions, drug developers, regulatory agencies, patient advocacy and other organizations,” said Janet Woodcock, Director of the U.S. Food and Drug Administration’s Center for Drug Evaluation and Research (FDA/CDER), “INC can develop practical tools that can be incorporated into clinical trials for neonates, which will then lead to more successful, efficient trials and provide this population with better treatments.”
INC’s Statement of Purpose:
INC will accelerate the development of safe and effective therapies for neonates. The consortium will engage the global neonatal community – families, neonatal nurses, academic scientists, regulators, pharmaceutical investigators, advocacy organizations, and funders – to focus on the needs of the neonate. Through teams that share data, knowledge, and expertise, INC will advance medical innovation and regulatory science for this underserved population.
I’m honored to be a part of INC!
At this workshop, co-sponsored by the FDA and Critical Path Institute, participants reviewed the progress of INC, discussed the challenges in conducting registration trials to prevent preterm birth, and the breakout groups tackled specific regulatory science issues for developing safe and effective therapies for neonates. Regulators from around the world engaged in working sessions with academic experts, interested companies, neonatal nursing organizations, NIH institutes, family groups and nonprofit organizations.
Day 1 began with several meetings of the working groups, including Severity for Neonatal Adverse Events, Retinopathy of Prematurity, and the Seizures Workgroup, and it ended with a workgroup dinner reception at the Bethesda North Marriott Hotel.
Day 2 began with Dr. Jonathan Davis (Tufts University, INC Co-Director) making the opening remarks. I also know Dr. Davis for over a year as he was the spearhead behind the Senate and House bills I mentioned above, and I had the pleasure of speaking on Capitol Hill with him. Dr. Davis has dedicated his entire career to bettering the outcomes of premature babies. Next, Susan McCune (Director of Office of Pediatric Therapeutics, FDA) gave a presentation titled “A New Era for Developing Neonatal Therapeutics”. After she was done speaking, each workgroup had a few minutes to share updates about what they have done and looked to accomplish in their Breakout Sessions. Soon after the workgroup summaries were complete, a presentation titled “Developing Endpoints for Use in Regulated Neonatal Trials” was given by Gerry Baer (FDA) and Ralph Bax (European Medicines Agency).
After a short coffee break, there was a panel session titled “Plenary Session on Challenges in Conducting Registration Trials to Prevent Preterm Birth”. Several people participated in this session, including Mark Turner (University of Liverpool, INC Co-Director), Olof Rugarn (Ferring Pharmaceuticals), Yosuke Komatsu (GlaxoSmithKline), Louise Kenny (University College- Cork Ireland), Errol Norwitz (Tufts Medical Center), Mehali Patel (Bliss), Deb Discenza (Preemie World and member of Preemie Parent Alliance), Ralph Bax (European Medicines Agency), and Barbara Wesley (FDA). Nicole Thiele from EFCNI (European Foundation for the Care of Newborn Infants) also called in and gave a presentation via WebEx.
Following the Plenary Session, we all took a break to eat lunch and get ready for the Breakout Sessions.
There were several concurrent Breakout Sessions, including the one that I was a part of, so I can only summarize what went on in the other sessions, after giving details about mine.
Christina Bucci-Rechtweg and I led the Breakout Session called “Communication Strategies to Promote a Research Culture”. We had a few goals. We wanted to build strategies that embed neonatal research that is family-centered in the NICU culture. In order to do this, we looked to first identify communication challenges in neonatal units that impede successful implementation of research.
We planned a mapping activity where we asked the participants to answer four questions regarding how parents are approached to enroll their babies in clinical trials and what makes them more likely to consent. This activity gave us a great deal of information on the current practices surrounding clinical trials in the NICU. Both Christina and I shared an informal literature review of some of the articles previously published on clinical trials in the NICU, from both the medical and the parent perspective. We also shared results from a survey we had previously given to parents of premature babies who are members of the Preemie Parent Alliance. This was also very telling and we are in the process of analyzing the entire survey, along with the parent comments and we will use that information to harness multi-stakeholder collaboration to address communication challenges and improve the quality and efficiency in neonatal research. Our session ended with a phone presentation given by Nicole Theile of EFCNI on a white paper they put out on the topics we were discussing.
Although Christina and I led the Breakout Session, we had a lot of input from the other members of our workgroup as well. I only recently joined INC and this workgroup so I am especially thankful to the other workgroup members for all of their work. They include Wakako Eklund (National Association of Neonatal Nurses), Lynn Hudson (C-Path), Carole Kenner (Council of International Neonatal Nurses), Jeff Ming (Sanofi Pharmaceuticals), Lily Mulugeta (FDA), Min Soo Park (Yonsei University), Ronald Portman (Novartis Pharmaceuticals), Randy Prescilla (Boston’s Children Hospital), Thomas Salaets (University of Leuven), Catherine Sherwin (University of Utah), Ine Skottheim Rusten (Norwegian Medicines Agency & PDCO), Adina Tocoian (Shire), Mark Turner (University of Liverpool), John Van Den Anker (Children’s National Health System), Sander Vinks (Cincinnati Children’s Hospital Medical Center), Kelly Wade (Children’s Hospital of Philadelphia), Siri Wang (Norwegian Medicines Agency and PDCO), and Anne Zajicek (National Institute of Child Health and Human Development/National Institutes of Health).
Two other Breakout Sessions were running concurrently to ours and those were titled “Multiple Enrollment in Clinical Trials” (Co-Chaired by Dr. Jonathan Davis of Tufts Medical Center/INC Co-Director and Gerri Baer from the FDA) and “Long-term Outcomes” (Co-Chaired by Neil Marlow from the University College London and Mark Turner from the University of Liverpool/INC Co-Director). Although I could not attend either of those sessions, I heard their summaries at the end of the day and it seems as if both sessions were very successful.
The conference continued on with more concurrent Breakout Sessions after a short coffee break. I attended the session titled “Regulatory Challenges in Conducting Trials to Prevent Preterm Birth” (Chaired by Mark Turner). The other two Breakout Sessions were “Developing a Neonatal Common Protocol Template” (Co-Chaired by Ron Portman from Novartis Pharmaceuticals/INC Co-Director and Anne Cropp of Echelon Pharma Solutions) and “Applying Generic Severity Grading Criteria to Persistent Pulmonary Insufficiency of Prematurity” (Co-Chaired by Karel Allegaert and Thomas Salaets from the University of Leuven).
Towards the end of the day we all assembled again as leaders from each Breakout Session reported back to the group with how their Breakout Session went, what was accomplished and what their next steps would be.
There were two more presentations given before Mark Turner’s closing remarks and our dinner reception.
First was “The Role of INC in Pediatric Trial Networks” by Edward Connor (PTC, I-ACT for Children) and William Tremm (Janssen Research & Development) and second was “Nonclinical Models of Neonatal Therapies” by Susan McCune (FDA). Both gave us a lot to think about as we me move towards our next steps on our INC committees.
Although I have spoken at several NICU events and nonprofit fundraisers in the realm of premature births, this was my first time participating in a conference where I felt that real change was being enacted towards preventing premature births as well as improving the treatments and medications used on our world’s current and future premature babies. As a member of The Morgan Leary Vaughan Fund’s Board of Directors, I can speak for the whole organization in saying that we are excited at the thought of new clinical trials being done to produce new medications to treat and cure Necrotizing Enterocolitis.
I can only hope that my present inexperience as a member of the International Neonatal Consortium (INC) will lead to vast experience in this space, as I continue to serve on INC’s Communications Workgroup. I look forward to what we will accomplish.
One of our first goals following this workshop is to create and publish INC’s quarterly newsletter.
Be on the lookout for it.
I want to mention two members of the Preemie Parent Alliance (PPA for short) that attended the event. Deb Discenza runs Preemie World, which she started after her daughter’s premature birth 13 years ago. Deb also spoke at the workshop. Dr. Yamile Jackson attended the workshop as well. She runs Nurtured by Design, a company she started after designing The Zaky and Kangaroo Zak. They are developmental products used on premature babies in the NICU and I highly recommend them both. She started her company after her son’s premature birth 15 years ago.
I would like to personally thank Christina Bucci-Rechtweg for her leadership and patience as I acclimated to the INC Communication Workgroup.
Alicia West, Laura Butte and Lynn Hudson of C-Path deserve a lot of thanks (and rest!) for all of their hard work in putting the workshop together.
I would also like to thank Wakako Eklund (NANN) for taking such wonderful photos at the event and allowing us to share them. She is a very talented Neonatal Nurse Practitioner and photographer!
And last, I would like to thank Dr. Jonathan Davis (Tufts University/INC Co-Director) who suggested that I get involved in INC and allowed me to make such meaningful connections. The future premature babies of the world will be much better off because of the dedication of Dr. Davis and his passion for neonatology.
Please visit INC’s website to see how you can help us with our goals. After all, advancements in neonatology cannot happen without research.
Oh, and I even got to see a Cherry Blossom. It was not down by the Potomac, but at least I got to see one!
As always, thank you for reading and for your support 🙂
Please comment on anything you found interesting or would like to know more about.
Having a baby in the Neonatal Intensive Care Unit (NICU) is emotionally challenging on a regular day, but add the holidays into the equation and it might be too much to handle!
My daughter spent 121 days in the NICU following her micro preemie birth at 23 weeks gestation. Since then I have made it my mission to help other parents who are struggling through their journey with prematurity.
Many parents wonder how they can possibly get through the holiday season with their baby in the NICU and not at home with them.
Below are 8 ways to help you celebrate the winter holidays with your NICU baby:
1. Hand write your Christmas cards and use them as Thank You cards
Whether your baby is spending most hours in an isolette or crib, you will have plenty of time to write. This is a great opportunity for you to thank people for their kindness. Some might have dropped off food, done your dishes, babysat, or just left you a supportive message.
2. Decorate your baby’s isolette or crib
Hang some ornaments or a wreath (not real pine!) over the isolette/crib. You could also decorate with some garland and tape up a few holiday cards. Why not take a picture of your home Christmas tree or Menorah and tape that to the wall also?
You could arrange Skype sessions with your family so that they can see your baby on Christmas or Hanukkah. You may need permission from the NICU nurses to do it, but it might be fun to have your family sing Christmas carols to your baby or just wish your baby a Merry Christmas or Happy Hanukkah.
4. Read your favorite holiday classic story to your baby
Babies love to be read to and studies show that it helps their brains develop and relaxes them so that they grow faster. Who wouldn’t want their Mommy or Daddy to read them a holiday book? This will also help you feel more in the holiday spirit.
5. Decorate preemie sized onesies for your baby to wear
If you have children at home, go buy a few preemie sized onesies and a few fabric markers at Toys R Us and decorate the shirts. It’s a great way for siblings to give a gift to their new baby brother/sister and they will also feel included. If your baby can’t wear cloths yet, make them anyway so that your new outfit can be the first one they put on!
6. Open gifts
Bring a few of your baby’s gifts to the NICU on Christmas Eve/Morning or on each day of Hanukkah and open them! There is no reason why you can’t do that to keep with your holiday tradition.
7. Bring some cookies/dreidels/latkes for the NICU staff
Whether you just met the NICU staff or have known them for months- they are your baby’s parents when you can’t be there and they will be there for you too. Wouldn’t it be nice to share the giving season with them and bring them some cookies or something else that shows them how thankful you are for them? Plus, you will get to celebrate with them and participate in one of your holiday traditions.
8. Celebrate New Year’s at noon
Bring some party hats and noisemakers to the hospital but don’t blow them! Put them next to your baby in the isolette/crib and take some pictures. These photos will be cherished for years to come. Plus, they represent a new year full of possibilities and promise and that’s what all NICU parents need. Then do your own New Year’s Countdown at NOON!
This originally appeared on my Huffington Post Parents page:
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.