A Memoir of a Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds
Despite the freezing temperatures in NY at the moment, my heart was warmed today by a former student of mine who sent me a message out of the blue, asking me to visit her as she sold baked goods to raise money for my daughter’s NICU!
Her name is Lauren and she graduated Mahopac High School a few years ago. During her senior year- she approached me to help her with a project she was doing to earn her Girl Scout Gold Award. She wanted to raise money for the scrapbooking program in the Neonatal Intensive Care Unit (NICU) at Maria Fareri Children’s Hospital at Westchester Medical Center. She called her project “Brighter Days for Hospital Stays”.
Lauren knew that my daughter was born seventeen weeks early at 23 weeks gestation in 2012, weighing just 1 pound and 4 ounces. My daughter spent 121 days in the NICU. There is no way to explain to someone what is feels like to not know if your baby will survive and then leave them in the hospital each and every night for several months, because you cannot take them home. The scrapbooking program, sponsored by the Child Life and Arts Therapy Department at Maria Fareri Children’s Hospital, makes life a bit more tolerable by providing this weekly class for parents who have a baby in the NICU. They provide each parent with a scrapbook and every other supply necessary, but photos. Parents get to put together a beautiful scrapbook documenting each milestone their baby meets in the NICU and they get to bring it home, free of charge, when their baby is finally discharged. But the scrapbooking is really a facade, because this weekly gathering is really like a free and necessary therapy session for NICU parents who are struggling to deal with their circumstances and who are looking for someone else who understands. It was of great value to me and I made some lifelong friends during my scrapbooking sessions in the NICU.
Lauren was able to raise enough money to buy them a new cart to hold and transport all of their supplies, along with a smart phone printer and many other papers and stickers for the parents to use.
You can read about Laruen’s project and fundraising by visiting the website she set up for it at: https://brighterdaysforhospitalstays.weebly.com
You can read my article on her accomplishments at: http://micropreemie.net/blog/brighter-days-for-hospital-stays/
She earned her award several years ago, yet today she returned to her hometown to raise some more money!
Lauren baked all day yesterday and set up this beautiful table in front of Red Mills Market– a very popular store in town- just so she could reach as many people as possible. The owners were surprised that she did not cancel due to the cold, but they don’t know her! They were also gracious enough to offer her unlimited hot drinks!
Let me say that the expected high temperature today was 15° F. Although she was actually freezing out there, Lauren was braving the cold to raise the money because she has to return to college in two weeks.
I am so proud of her and the beautiful young woman she has turned into. She will be excellent in whatever field of medicine she decides to pursue.
Great job Lauren! I know the Child Life and Arts Therapy Department will be so happy to hear what you did.
I am always happy to collect scrapbooking supplies and deliver them to Maria Fareri Children’s Hospital because I am there at least once a month for the NICU Parent Mentor Program.
Please contact me if you would like to donate supplies or money to the scrapbooking program.
Last month I had the honor and pleasure of attending the 28th Annual NIDCAP Trainers Meeting at the Chateau Lacombe Hotel in Edmonton, Canada. This is a group of people who are dedicated to improving the care of newborns in the Neonatal Intensive Care Unit (NICU).
So, what does NIDCAP sand for?
NIDCAP stands for Newborn Individualized Developmental Care and Assessment Program.
What is NIDCAP about and how did it begin?
When infants are born early or ill, the world may be a shocking place. In the intensive care nursery, they are exposed to bright lights, cold temperatures, loud sounds, a tangle of tubes and experiences of discomfort and pain. For the tiny infant, not yet fully developed in the protective space of the womb, everyday conditions may be jarring. More importantly, intense stimuli may interfere with normal development, causing serious health issues later in life.
From years of observing infants in the NICU, Dr. Heidelise Als, of Harvard Medical School and Boston Children’s Hospital, and her colleagues pioneered a way to read infant behavior so that we may hear their voice and understand them. This practice has taught us what the infant expects for comfort, wellbeing and a sense of security is so vital to healthy development. The NIDCAP training model came from research on infants who were cared for by reading their behavior cues. Several studies showed improved outcomes in the NICU. Babies cared for with the NIDCAP approach gained weight faster, moved from assisted breathing to breathing on their own faster, moved to breast and bottle feeding sooner and spent less days in the NICU overall.
You can watch a short video on the basics of NIDCAP by clicking HERE.
NIDCAP is overseen by the NFI (NIDCAP Federation International)
The goal of the Founders and Members of the NFI is to ensure that, one-day, all infants and families in intensive and special care nurseries will receive individualized and developmentally supportive family centered care. Serving as the authoritative leader for research, development, and dissemination of NIDCAP, the NFI was incorporated as a non-profit 501c3 membership organization in October of 2001 by Dr. Heidelise Als and colleagues. The NFI researches and is responsible for the certification of trainers, health care professionals and nurseries in the NIDCAP approach.
So… back to the NIDCAP Trainers Meeting.
Unfortunately, I was not able to attend the entire meeting, as it spanned over several days, but I believe I got to attend enough of the meetings and presentations to get a good feel for how NIDCAP works and why it’s important to educate the public on why every NICU should look into adopting their care model.
There were many presentations during the conference (many that I had to miss!), each of which gave the attendees great ideas and inspired us all to keep sharing NIDCAP and it’s successes with our connections and hospital staff.
Some of the presentations included Behavioral Phenotype of Prematurity (Paige Terrien Church); Adolescent Challenges Beyond the NICU (Andrew Thomson and Dawn Gordon); Accomplishments and Overview of Training Efforts (Jim Helm); Leadership is INFLUENCE: NIDCAP and the Science of Change (John Van Aerde); Nurturing the Trainer (Joy Browne; Infant Mental Health in the NICU (Brandene Lorrain); Mindfulness Practice for Stress Reduction in NICU Staff (Prascilla Koop); Coming of Age, 21 Years of NIDCAP in Edmonton (Juzer Tyebkhan); Neurodevelopmental Care Policies, Practices and Outcomes in France (Veronique Pierrat); Navigating the System After Discharge from the NICU (Shannon Haszard and Dan Coulton); Multidisciplinary Panel Presentation on NIDCAP and the Surgical NICU (Charlene Robertson, Krystal Johnson, Chloe Joynet, Brandie Thomas, Samantha Butler, Kayne Spence, Alison Loughran Fowlds, Leonora Hendson); Insights from the Beating Heart: Heart Rate Variability and Skin to Skin Care (Rohan Joshi); How to Read a Meta-Analysis (Manoj Kumar); Phenomenological Research (Michael can Manen); Interactive Activity on The Brain Structure (Brandene Lorrain and Andrea Nykipilo); NIDCAP Nursery Self- Assessment; The Key Tool for NIDCAP Trainers (Rodd Hedlund); and a presentation of the 29th Annual NIDCAP Trainers Meeting next year. There were also several short Abstract presentations.
Let’s not forget about the Dinner/Dance Party and the Gala! They were so much fun and a great way to mingle with the trainers.
I also need to mention my gracious NIDCAP guide Mandy Daly, of the Irish Neonatal Health Alliance. She is a lovely woman with a heart of gold, of which she has dedicated to helping the families of premature babies in Ireland after her own daughter’s premature birth eleven years ago. Mandy joined NIDCAP a few years ago so that she could expand her ability to help preemie families. She is a dedicated member was a great host.
I have to admit that it’s every parents dream to be able to read the behavioral cues of a baby and then be able to sooth that baby so that they are comfortable and happy. The NIDCAP model is not as simple as this, but I can’t see how it would be harmful to a baby to have their doctors, nurses and parents be trained on how to best help an individual baby based on signs the baby is showing- especially if that baby is then thriving because of it. Just as each adult is different from the next, as far as what comforts them, babies are no different. The NIDCAP certified staff learns to look for over 81 signs that a baby can show and each of those express something that the baby is feeling or lacking. In my opinion, the NIDCAP training model only adds to the wonderful life-saving work that the NICU doctors and nurses are already doing. Why can’t the NICU be a place that supports the mental health of both baby and parent, as well as be the place where premature infants get the physical care needed to survive?
I really enjoyed my time at the NIDCAP Trainers Meeting and I look forward to joining their organization to help share their mission of promoting the advancement of the philosophy and science of NIDCAP care.
There are NIDCAP Training Centers in The United States (Arizona, California, Colorado, Illinois, Massachusetts, North Carolina, Ohio, and Oklahoma), Canada (Edmonton), Europe (Belgium, Denmark, and France, Germany, Italy, Netherlands, Norway, Portugal, Spain, Sweden, United Kingdom), South America (Argentina) and Australia (Westmead), but there should be more! Click HERE to see exactly where the Training Centers are.
To read more on what NIDCAP is about and why their approach to caring for newborns in the NICU is so important, please visit http://nidcap.org/en/
Next year’s Trainers Meeting is in Portugal!
Last month I had the pleasure of attending and speaking at the 33rd Annual NANN Conference in Rhode Island. Although I was only able to stay for a small portion of their conference, it was a wonderful experience. Cheryl Chotari (from Pebbles of Hope) and I presented together. Our NANN presentation was called “Activities to Help NICU Parents”. We both shared different things that nurses could do to help parents feel more comfortable caring for their babies and we also discussed better ways to communicate with NICU parents.
Last year I was a Keynote Speaker on the final day of the NANN Conference in Palm Springs, California and that was a very special experience for me. You can read about my experience, as a Keynote Speaker at NANN 2016, HERE.
This year I only had to drive for three hours to get there! It was wonderful to see and spend time with so many of the NICU nurses that I met last year, as well as some of the NICU (Neonatal Intensive Care Unit) nurses from my daughter’s hospital.
Dr. Jackson is the founder and president of her company, which was inspired by the premature birth of her son Zackary, sixteen years ago. After his birth, Dr. Jackson created the Zaky and Kangaroo Zak. Both are products are designed to improve the developmental care of babies in the NICU. The Zaky helps calm babies while they are in the incubators, bassinets and cribs by providing comfort and can even be worn by parents before being placed on the baby, so that the baby can become familiar with the parents scent. The Kangaroo Zak is a product used to encourage and prolong kangaroo care sessions between parents and baby. Many studies have shown that babies who are kangarooed very often will have a lower heart rate, sleep more and even have a shorter stay in the NICU. Who wouldn’t want to be hugged by their mom and dad as much as they could? Please visit the Nurtured by Design website to learn more about these amazing and necessary NICU products.
When I wasn’t with Dr. Jackson, I was spending time with my friend Mary from The Morgan Leary Vaughan Fund. I have the honor of being a member of their Board of Directors and to play a small part in many of the wonderful things they accomplish. Morgan’s Fund raises money that goes straight to the doctors, nurses and scientists who research ways to treat and prevent premature babies from getting Necrotizing Enterocolitis (NEC) while they are in the NICU. NEC is a deadly disease that causes the immature intestines of premature babies to perforate and spread toxins throughout the blood. Unfortunately, it has a high rate of mortality and leaves many babies with lifelong problems. Morgan’s Fund is trying to eradicate this terrible disease and I’m trying to do my part to assist.
I also got visit with Trish Ringley from Every Tiny Thing. Trish has been a NICU nurse since 1997 and started her company to develop products are a one-of-a-kind and specialize at bringing joy to families with babies in the Neonatal Intensive Care Unit. You have to check out her stuff!
No NICU related conference would be complete with a visit with my friends at Draeger. If you’ve talked to me at all in the last 5 months you probably heard me go on and on about Draeger’s new incubator, called Babyleo. It’s amazing! It’s everything I wish I had in a temporary home for my daughter while she spent 4 months in the NICU back in 2012. This incubator does it all and then some. It allows you to customize the screen you look at all day so that it can feel more like home. It has a mattress warmer for when the hood is open for a long period of time. It allows you to use your elbows to open and shut it to reduce germ transfer and it even has a kangaroo care mode. These are just some of the reasons why I love Babyleo.
This past August I was brought to Draeger’s headquarters in Telford, PA with Deb Discenza from Preemie World to film a series of education videos for them on how to use their Babyleo and what it’s like to have a premature baby in the NICU for so long. Deb and I really enjoyed it. Our videos should be up on their website soon. You should visit their website to learn more and to see how you can get it into your NICU. Click HERE to read about the Babyleo incubator. I keep telling them to hire me to sell their incubator in NY. Let’s see if they agree 🙂
Anyway.. back to NANN.
There were several inspirational Keynote Speakers at this year’s conference, along with many other smaller session speakers.
They Keynote Speakers included Joe Tye (Opening General Session: The Florence Prescription for Building a Culture of Ownership); Kelley French (General Session II: Telling Stories in the Dark: The Healing Forces of Attention, Instinct, and Love); Marcus Davey (Bonus General Session: Transforming Care for Extremely Premature Babies) and Pam Spivey (Closing General Session: Joyful Journey: The Life and Times of a Neonatal Nurse).
I truly enjoyed my short time there and I hope to return next year 🙂
Oh.. and here is a quick reminder that November is National Prematurity Awareness Month and November 17th is World Prematurity Day.
October is RSV Awareness Month!
RSV (Respiratory Syncytial Virus) is a serious disease for all newborns, but it’s particularly dangerous for premature and medically fragile babies. RSV is always present in the population, but most areas of the country have increased cases of RSV in the late fall through early spring, which is why October has been designated as RSV Awareness Month.
So what is RSV?
RSV is a contagious respiratory disease that can infect the lungs. Nearly all children will catch it by 2 years of age, but luckily it usually presents as a regular common cold in healthy children and healthy adults. Babies who were born premature are at higher risk for a severe infection due to the likelihood that they have weaker lungs. A baby that is born prematurely is more vulnerable to severe RSV disease because they were born before their respiratory system could fully develop.
My daughter Joy was able to avoid contracting this terrible respiratory disease, but not all premature babies have such luck.
Recently, I had the honor of participating in a series of radio, television and internet interviews- along wit Dr. Mitch Goldstein of Loma Linda Medical Center in California– to help spread RSV awareness and offer tips on how parents can prevent their babies from getting RSV. Although we partnered with AstraZeneca on this satellite media tour, our opinions were our own.
Below are links to three of our interviews:
I also participated in interviews that led to several articles on RSV awareness and prevention. I linked some of them below:
Please read and share as many of these links and articles as you like, so that we can all help educate the public on the dangers of RSV and ways to help prevent it.
RSV season is only beginning in the Northeast and just maybe we can prevent a few babies from catching it if we spread awareness!
For more information, please visit www.rsvprotection.com
And don’t forget that November is National Prematurity Awareness Month and November 17th is World Prematurity Day. Please check back here (www.micropreemie.net) to see all of the exciting events that are happening in honor of WPD2017!
The 2017 Preemie Parent Alliance Summit was just as amazing as the previous ones!
Cook Children’s is a beautiful hospital. It has so many amenities for the patients and their families, designed to relieve some of the stress associated with a long hospital stay, including a Build-A-Bear workshop for the kids and a Starbucks for the grown-ups. What beats that?
But it’s not just the amenities that make Cook Children’s an amazing hospital- it’s the superb staff and their belief in Family Centered Care.
The summit agenda was designed so well that there was something for everyone- no matter if you were the founder of a nonprofit or a parent selling something you created to support the world’s future preemies. Below are some photos of our exhibit tables:
For those who were able to arrive early on Friday afternoon, there were two pre-conference sessions offered, as well as time allotted to set up your exhibit table. Dr. Yamile Jackson from Nurtured by Design and Deb Discenza from Preemie World presented “Improving Awareness and Practice of Kangaroo Care and Beyond” and Elizabeth Schneider of The Tiny Miracles Foundation presented “Perinatal Bereavement- How Peer to Peer Organizations can Support Families Experiencing Perinatal Bereavement”. There was also a Welcome Reception Friday evening- designed to help members network with each other and make some new connections, too. Sadly, I wasn’t able to attend any Friday activities but I heard they were all a success and a great time was had by all!
Saturday morning began with opening remarks from Keira Sorrells, the Founder and President of the Preemie Parent Alliance. She began by welcoming everyone to the summit and sharing what PPA has been up to since our last summit. Keira then handed the floor over to Natalie Gordon of NICU Helping Hands for her presentation called “Setting the Stage to Pave a Healthy Path to Leadership”. Natalie was the perfect person to discuss this, as she has been helping preemie families and serving the NICU community since the premature birth of her twins over a decade ago.
Next was the Keynote Address titled “Life Support: 3 Vital Strategies for the Aligned Leader” by superstar Sue Ludwig, President and Founder of the National Association of Neonatal Therapists (NANT). I personally learned a lot from her presentation. Only recently, over the past three years, have I really gotten involved in the neonatal community and I believe it is my true calling. I know for a fact that it is what I am most passionate about because I am always brainstorming different things I can do or make to improve a family’s NICU experience. But as many people will understand, the things that you are most passionate about can also be the very same things that suck the life out of you because of your passion level. It’s difficult to sleep at night because much of the work I do in this space happens once I’m done taking care of my family and household and grading my student’s lab reports. I need to learn how to balance better and Sue gave me some great tips and suggestions on how to do just that. Plus, she is a great motivational speaker and very engaging!
After a short break we all sat down to listen to a panel presentation titled “Advocating for a 100% Human Milk Diet for NICU Babies”- including Dr. Erin Hamilton Spence of MEDNAX, along with Scott Elster and Dr. Melinda Elliot of Prolacta Bioscience. This was a very informative panel discussion on the science behind an exclusive human milk diet, including 100% human milk fortifier added to breast milk, so that babies get only natural ingredients designed by the human body. This was a good one!
After lunch, we all gathered for Lelis Vernon’s presentation, called “Parents Working in QI: Where Are We and What Are The Potential Next Steps”. Lelis is from Baptist Children’s Hospital in Miami, FL and she is full of energy!
Next was our first Breakout Session- where members had to choose between “Combating Compassion Fatigue and Avoiding Burnout” by Tracy Pella from Connected Forever and “The Indispensable Anchor of Your Nonprofit Organization: Recruiting, Managing & Leading Your Team of Volunteers” by Lisa Grubbs from NICU Helping Hands. Both gave out valuable information and tips and received great reviews.
The day ended with “Celebrating Our NICU Children” by PPA President Keira Sorrells and Cristal Grogan. We all got to paint a rock and write an inspirational word or saying on it. This was such a nice way to end the day.
Once our day of presentations were over, we all had about an hour to get ready for our off-site dinner at Reata in downtown Fort Worth. Dinner was delicious and the company was even better. It was nice to chat with some members and attendees that I had yet to have a chance to speak with- including Ali Dunn (author of I Was a Preemie Just Like You) and Sara Mosher (Founder/President of Patient + Family Care). It was a great night!
Sunday morning began with our PPA Members Annual Meeting, after Keira introduced some of the major areas of business that needed to be discussed. A few of us spoke about some aspects of PPA of which we are involved in and then we has a short break before our first presentation of the day called “Developing Measures for Family Centered Care for Diverse Families”. This was a panel discussion, which included Krista Sigurdson of Stanford University, Dr. Jochen Profit of Stanford University and Lelis Vernon of Baptist Children’s Hospital. This session ended with our attendees being asked to provide some feedback and advice on several different things and we were all happy to participate.
After a short break we had had a choice between “Peer Support in the NICU: The Tiny Miracles Model & Lessons Learned Along the Way” by Elizabeth Schneider of The Tiny Miracles Foundation and “Preparing Future Leaders: How to Develop an Internship Program for Your Organization” by Ali Dunn (Me Two Books). While both were so interesting to me- I decided to sit in on the first because I am currently trying to create a NICU Parent Mentor Program at my daughter’s former NICU and I needed some advice. I was told that Ali’s presentation was super!
Next was lunch.
Once we all ate our sandwiches we were asked to choose one last Breakout Session to attend. Our choices were “The Bereaved Parent: Reframing the Outsider’s Perspective and Identifying Collaboration Opportunities” by Stacey Porter of The Tangerine Owl Project and “Is Family Support a Burden? Perspective From a Neonatal Nurse” by Sara Mosher of Patient + Family Care. As usual- I wish I was able to attend both, but that’s just not possible so I went to the first one because unfortunately I will have to mentor bereaved parents once I get my program going. Of course I wish this were never the case.
Sadly I had to leave mid-session because I had to catch my flight home as to not miss teaching my classes back in New York in the morning. Such is life, but I needed to go.
I don’t want to forget to thank the sponsors of our Preemie Parent Alliance Summit. Without them we would not be able to have such a great conference. So- thank you to Prolacta Bioscience, Draeger, NICU Helping Hands, Vivicare Health Partners, Your NICU Baby, Patients Like Me, and AztraZeneca– and Cook Children’s Hospital for donating their state of the art facility.
The Preemie Parent Alliance Summit is something I look forward to each year. Not only is it great to catch up with good friends, but it’s so inspiring. I always walk away feeling rejuvenated and ready to take on the world. I leave knowing that I am working towards something bigger- something that is new for me as of five years ago. Before my daughter was born extremely premature in 2012- I was content with my life thus far. Once our family experienced the roller coaster of a life threatening pregnancy and premature birth and we watched our precious Joy struggle to survive and overcome her preterm birth- we all changed. I have realized that I am meant to do what I can to help the future premature babies of the world and also help their families handle their own roller coasters.
Every single member of the Preemie Parent Alliance shares similar feelings as me and they are driven by their own private journey with prematurity. It feels like I’m going home to be with my family when I arrive at the PPA Summit. It’s feels so comforting to spend time with people who get you and share your feelings of pain and successes.
Oh… I also want to mention the PPA Members and Affiliate Members that came to our summit. Besides me (Jennifer Degl), they include Astarte Medical, Connected Forever, Courageous Steps, Eli Collins Foundation, Graham’s Foundation, Hand to Hold, Holding Tiny Hands Foundation, Instituto PGG, It’s a Preemie Thing, Lily’s Hope Foundation, MeTwo Books, Mothers’ Milk Bank of North Texas, National Coalition for Infant Health, National Perinatal Association, NEC Society, NICU Helping Hands, Nurtured by Design, Patient+Family Care, Preemie World, The Morgan Leary Vaughan Fund, The Tangerine Owl Project, The Tiny Miracles Foundation, Will’s Way Foundation, and The Zoe Rose Memorial Foundation.
And I cannot forget to thank a few more key people who worked tirelessly to make the 2017 PPA Summit a success. This includes our PPA President Keira Scorrells, who gives her time selflessly to make sure we all enjoy our time together and take away valuable lessons each other; Cristal Grogan who works behind the scenes and wears too many hats for me to list; and Lisa Grubbs who was on site and helped coordinate each aspect of the summit with the hospital, hotel and restaurant so that we had all of the spaces we needed and all of the food required to keep this group happy 🙂 I’m sorry if I missed someone.
And last, I want to thank each PPA member who serves on a committee (including the summit planning committee), because these positions are entirely volunteer based and those of us on the committees donate our time to help the Preemie Parent Alliance grow and thrive and evolve on a daily basis.
That’s all for now!
I’m already looking forward to next year’s PPA Summit. Rumor has it that it will be on the East Coast!
Whoo Hoo for me!
I’ll see ya there, but in the meantime please visit http://www.preemieparentalliance.org/ for more information and to see how you can get involved, and I’ll work on getting a real camera before I see you there next year so that I can take better quality (not cell phone!) pictures 🙂