PREEMIEWORLD: What is your job title/occupation?
JENNY: Senior Editor of PreemieWorld and Operations Manager of Alliance for Black NICU Families
PREEMIEWORLD: Name of company you work for?
JENNY: PreemieWorld, LLC & Alliance for Black NICU Families
PREEMIEWORLD: Please tell us how long you’ve been working in your field.
JENNY: 3 Years
PREEMIEWORLD: Why did you choose your current profession?
JENNY: As all Preemie Professional Parents will tell you, “This profession chose me.”
In 2012, my youngest son, Joshua, came into this world at 26 weeks gestation and spent 129 days in the NICU. Prior to this experience, I was quite oblivious to preterm birth and what that truly looks like for the estimated 380,000 babies born prematurely each year and their parents who are thrown into the high-stress, overwhelming life-or-death-decision-making world of the Neonatal Intensive Care Unit.
Had I not gone through preterm birth, a terrifying NICU stay following countless therapies and IEPs with my son that continue today, I would still be in blissful ignorance of what preterm birth truly means. During my NICU stay, I was lost, scared and very much alone. The many friends and connections I had just didn’t understand what I was up against and how lonely the journey is. I began to look for support, answers, hope and sanity.
Thankfully organizations like PreemieWorld exist. I came into contact with Deb Discenza, CEO of PreemieWorld and the leader of the Inspire Preemie Community Support Group. After reaching out to the support group and requesting information on brain bleeds, Deb emailed me a slew of resources and information. The community of preemie parents embraced me, encouraged me and reminded me daily that I wasn’t alone.
When I was offered a position with PreemieWorld, I was beyond excited. What a wonderful way to pay it forward, to give back and to help promote prematurity awareness to the masses.
PREEMIEWORLD: What do you want other professionals to know about what you do?
PreemieWorld was created to help bridge the gap between parent and professional in the NICU, at home and beyond. PreemieWorld provides books, videos, and other products and tools with the hope to make everyone’s life just a little bit easier during the tumultuous NICU journey and beyond. Also, as an added resource, subscribe to our preemiePRO newsletter. This is a great support for all neonatal professionals. https://preemieworld.com/subscribe-preemie-pro/
PREEMIEWORLD: What advice do you give to preemie parents?
JENNY: The best advice I received from a preemie and loss dad was, “Stay in the moment.” Try not to think too far ahead at the what ifs and maybes. Take it one day at a time, one moment at a time and one breath at a time. Remember that in the moment, your baby is still present, talk to him, tell him how much he is loved, tell him to fight and that you are there every step of the way and above all, hold onto hope. Hope gives us the courage to keep advocating for our preemies. Also, remember to give yourself grace. Whatever feelings you have are okay. Be angry, be sad…you are entitled to grieve, hope and feel whatever feeling hits you. Your emotional health is an important factor in traveling the NICU journey. Allow yourself to feel, regroup, walk away for a bit and try, try again.
PREEMIEWORLD: What’s one piece of advice you would give others who want to support someone who is going through a NICU stay?
Sometimes the most well intentioned words can sting. Preemie mothers can feel vulnerable and rightly so. Sometimes the best thing to say is nothing at all. Sometimes a silent presence offers the best form of comfort. Also, the NICU journey can last days and even months and the NICU journey can be isolating and incredibly lonely – CHECK IN! Remember to check in with the preemie mom and dad. Sometimes just a quick “I’m thinking about you” text can make all the difference.
PREEMIEWORLD: Fun Facts: Tell us a fun or quirky fact about you.
I’m a total rocker. I love rock concerts and live music. I’m also a Star Wars nerd. My boys and I celebrate Star Wars day every year with fun Star Wars foods/drinks and of course an all-day Star Wars movie marathon! (May 4th).
PREEMIEWORLD: Is there anything else you’d like to share with us?
JENNY: Prematurity doesn’t end in the NICU. It’s a lifelong journey. With this in mind, Deb’s latest passion project, Preemie Crystal Ball, is a research portal being developed for the preemie community through the lifespan of pregnancy to birth to childhood, adolescence, adulthood and the geriatric years with the goal to help develop supportive and integrative care for prematurity-impacted families. Learn more: https://crystalballhealth.com/
Lastly, Preemie Parents: You got this and WE GOT YOU!