the superhero project
Our NICU journey
Dever was born at 23 weeks gestational age weighing one pound. Dever spent the next 117 days at the University of Maryland Medical Center (UMMC) NICU in Baltimore, MD. He was five weeks old before we held him for the first time. He was nearly three months old before we could consider the possibility of bringing him home. Dever overcame multiple collapsed lungs, chronic lung disease, subclinical infections, sepsis, necrotizing enterocolitis, MRSA, retinopathy of prematurity with plus disease, two surgeries, and was resuscitated twice. While so many things did go wrong, the NICU taught us to appreciate all of the things that didn’t go wrong; Dever’s heart was healthy, we visited daily, and his mom’s recovery was uncomplicated – to name a few.
Throughout our NICU journey, we were continuously humbled by the challenges being overcome by fellow NICU families, especially parents of multiples and those with older siblings at home. Despite being born at 23 weeks, Dever miraculously graduated from the NICU two days before his due date and is now completely off oxygen and all medications. He loves sticking his tongue out, playing toy drums, and piggy sounds! We are incredibly privileged and grateful for our experience and are committed to paying it forward.
We founded The Superhero Project’s Baltimore Bay-bies fundraiser to empower Baltimore-area NICU families and care teams with resources and amenities to ease their journeys and optimize patient outcomes. We are also passionate about being a visible example that micro-preemie survival may not be probable, but it is possible. And in the NICU, hope is the greatest currency of all.
We are inspired by the expertise and compassion of the UMMC NICU care team and Dever’s immense courage and strength. We are honored to be parents to our very own Superhero. Thank you for your generous support to current and future Superheroes, angels, and their families.
– Superhero Elyse Korsyn
One of our Superheroes!
How did you first become involved with or hear about The Superhero Project? – A family friend sent us a Superhero Project care package!
What support did you receive from The Superhero Project? – We received a care package and subsequently attended The Superhero Project calendar photoshoot, where we got to meet fellow NICU parents.
How did our support make you feel or impact your NICU experience? – We received the care package and personalized note at the beginning of our NICU journey amidst COVID shutdowns; it was the first time we heard directly from another NICU family and it gave us hope. It was a lifeline and critical comfort in an otherwise very dark and pessimistic time. We truly appreciate the care and thoughtfulness.
Of all of the programs we have to support NICU families, do you have a favorite one, and why? – My favorite program is Wrapped In Love. When we arrived at the hospital just 22 weeks pregnant, we were told that our son had a 2% chance of survival. That means that about 98% of parents who share our story have Superhero angels. I appreciate that not everyone may want to talk about it, but I hope that those who do want to talk feel welcomed and loved by the NICU community. While we can’t change medical outcomes, we can certainly hold each other up and help each other heal moving forward.
Why do you continue to support The Superhero Project? – The best and worst days of our lives were spent in the NICU. During our stay, the NICU resources were understandably concentrated on the most critical needs. This left an opportunity to improve the comfort and amenities for NICU families. We also noticed that visitation was a luxury that not every family could afford. We’re passionate about raising money through the Baltimore Bay-bies to bring visitation and essential supplies to as many Baltimore-area NICU families as possible. We are also passionate about being a visible example that micro-preemie survival is possible. Our 23-weeker is now a happy, healthy chunky 13-month-old. We hope that people hear his story and feel hope. And in the NICU, hope is the greatest currency of all.
Looking back on your NICU experience and what you know now, what advice would you have told yourself when you were in the NICU? – If I could give myself advice, I would tell myself to take it one day at a time, advocate for yourself & your child, and give yourself grace.
For the first week, I found myself expending a lot of physical and emotional energy instinctively wanting to “prepare” by imagining the future possibilities. Once I started truly being present and appreciating each day, I was able to find joy and peace in the small things. I advocated the importance of this to my support network to protect my mental health, asking them to avoid questions about the future and making future plans. We lived and loved in the moment every day. When I was present, I was able to advocate for my son and was surprised at how often my input was valuable: When his condition was so critical that he started crashing every time that they weighed him (and they weren’t weight-adjusting his medications), I asked if we needed to weigh him every day – and the answer was no! They started weighing him every three days. When he grew distressed with his CPAP mask and I learned that he could receive CPAP through a RAM nasal cannula, I asked for that too – and they said yes! He’s had a round head ever since. Be present. Ask questions. Advocate. And give yourself grace to not be okay. What you’re doing is so hard. And you’re doing such a great job.
Why Baltimore Bay-bies?
Many Superhero families experience the best and worst days of their lives in the NICU. For some of those families, all of their memories with their child/children are in the NICU. Such an important place deserves care and attention. That’s where you come in!
All donations to the Baltimore Bay-bies go directly to providing Baltimore-area NICU families and staff with critical resources and comforts. While nothing can alleviate the emotional weight of the NICU, every bit of support can make the difference between keeping it all together and completely falling apart. The Baltimore Bay-bies was founded in 2021 by a group of Baltimore-area NICU parents who know this all too well and want to do what we can to ease the journey for future NICU parents. For that purpose, we have four key objectives:
- Be A Support Group: Share NICU Challenges, Triumphs, And Losses With A Community Of Fellow NICU Caregivers
- Provide Comfort: Ease The Journey For Patients & Caregivers Through Amenities & Care Packages
- Enable Capabilities: Fill In Gaps For Needed Medical Equipment
- Improve Equity: Enable Equal Opportunities For Family Visitation & Caregiving Across Socio-Economic Backgrounds
Facilities such as the University of Maryland Medical Center (UMMC) NICU treat over 700 patients every year, over 80% of which are on medical assistance. For these families, bus fare, gas, food, and baby essentials can be financial burdens that detract from caregivers’ abilities to visit and care for their child. The Baltimore Bay-bies hope to improve equity in NICU experiences by removing these barriers and allowing caregivers to focus on their child. Every donation makes a critical impact on these families’ lives. Thank you for considering donating to the Baltimore Bay-bies and The Superhero Project!
Wanna join forces in Baltimore?
One of our Superheroes!
Jacquan “JJ” Grant
Baby JJ who was an ex 24 week preemie weighing only 1 pound 10 oz at birth. JJ spent 126 days in the NICU and was discharged after undergoing prematurity, open heart surgery, Vocal cord paresis, laryngomalacia, stridor, G- tube placement, hernia repair, cyst removal, reflux, and ROP, which has now resolved. After discharge we followed up with over 9 specialists and came home with oxygen. Now JJ is a happy, healthy, thriving one year old!
He loves to say “da-da”, eat table foods, and dance. He loves going on walks and looking at all of the beautiful trees, birds, and flowers. We endured 4 long months in the NICU and our experience was made so much easier with all of the support from staff members as well as former NICU families who donated various items and meals. We understand firsthand the toll it takes on families mentally, emotionally, physically, spiritually, and financially! We hope to raise funds to make this journey easier for NICU families at the University of Maryland Medical Center. Looking back, I would advise myself to continue to stay positive and strong for our little one and before you know it, discharge day will arrive. The roller coaster of the NICU journey is temporary and before you know it, the ride will be over.
India Owens-Grant, NICU Parent