A Memoir of a Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds
The 35th Annual Regional NICU (Neonatal Intensive Care Unit) Reunion was held on September 13, 2017 and it was a great afternoon! It was Joy’s 5th NICU Reunion!
It’s so wonderful to watch as families play with their little miracles who are all alive today because of the excellent care they received at Maria Fareri Children’s Hospital at Westchester Medical Center.
As usual, we set up our table-, which allows us a perfect spot to park and wait for parents to stop by and say hello and share their own NICU success stories.
The rain held off until we were just about to take our group photo- but we managed to get the photo in before it started to pour- and the rain only lasted a few minutes.
Besides meeting new families and learning their NICU success stories and running into some of our own NICU friends, we also love to meet up with Joy’s former Neonatologists and NICU Nurses.
All of Joy’s doctors and nurses became like a second family to us and every year we get to hang out with them and catch up. This is my favorite part of the reunion.
As you can tell in the photo below- Joy believes this event is just for her and all of the other people show up to celebrate her.
She calls this HER hospital each time we pass it on the highway and she loves to go back and visit. This might be because everyone makes such a fuss when we walk in the door and she never leaves without at least five lollypops 🙂
We can’t wait until next year’s NICU Reunion.
My baby came home from the NICU 5 years ago TODAY!
The days leading up to today have been very busy- but they have still allowed time for appreciation and reflection.
It’s difficult to feel so lucky as millions of people are dealing with terrible winds and flooding from Hurricanes Harvey and Irma. They are all in my prayers.
Below is what I wrote last week as I’ve been anticipating this 5 -Year NICU Anniversary and what it means to me:
Why Autumn is My Spring
The season of Spring symbolizes new life and new beginnings for many people, but for me it’s different.
Autumn is my Spring.
For me (a teacher)- the beginning of Autumn means a fresh start to a new school year and also the beginning of my life with my daughter.
My daughter Joy was born 17 weeks early as a micro preemie in May of 2012. She weighed just 1 pound and 4 ounces at birth and was only 11 ¾ inches long. After spending 121 days in the NICU (Neonatal Intensive Care Unit), she came home to join our family on September 9th 2012.
That was the day that my family became complete. All of our fears and sadness began to dissipate on that September day- 5 years ago today!
My boys made signs and banners and our family filled our house with balloons. It was a celebration of a new start.
Prior to her birth, I stood a very high chance of losing my life to Placenta Percreta (and I almost did on four different occasions), and I was hospitalized for several weeks because of it. Joy was also very likely not to survive her extremely premature birth.
We are both survivors.
The first four months of my daughter’s life is still a bit of a fog. I believe that I was going through the motions of what needed to be done to keep my family from falling apart, although I can’t remember much of what was going on outside of the NICU.
I was in function mode.
Joy’s extremely premature birth not only caused her to deal with a plethora of serious medical issues, but it also left me very sick and my three other children without a full-functioning and available mother for several months.
But, that all began to change in the fall of 2012.
September 9th marks the 5-year anniversary of the day my rock star micro preemie came home from the NICU.
That day will be burned in my memory forever.
It was almost like the day I gave birth or the day when a new mother brings home her healthy new baby- a feeling of a new beginning and a fresh start.
I would give almost anything to have had a “regular and full-term” delivery and have that be the way my daughter joined our family after a three day hospital stay- and to somehow be able to remove all of the pain and suffering she endured during her four months in the NICU.
I would give almost anything to be able to have those precious months back with my other three children and to not have the memories and guilt of leaving them and “choosing” to be by my daughter’s side while she was stuck in a human incubator designed to keep the rest of the world away.
But that is not what happened to us and we must make the best of what happened.
I cannot believe that today is the 5-year anniversary of my daughter’s NICU homecoming. In many ways it seems like yesterday, yet in many ways it also seems like an eternity ago.
I’m curious if any other preemie or NICU parents feel the same.
Do you remember your baby’s discharge date as I do?
Do you also feel as if it’s a day to commemorate your child and celebrate their strength and will to live?
Today- Joy is a happy and healthy (with some minor medical issues caused by her premature birth) little girl and she also loves the fall!
Autumn will always symbolize strength and new beginnings for our family- and there’s no better season to take commemorative photos in places like apple orchards, pumpkin patches or just over a pile of leaves.
Happy 5 –Year NICU Homecoming to Joy and our family and Happy Fall to you!
A fresh start can be good for us all.
You can find a similar post I wrote for The Mighty called
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: