FLRRiSH , The Resource for Parents of Premature Babies
By Marissa Oliva
Having a baby is one of the most beautiful experiences in the world. But it can also be one of the most isolating – especially if your baby is premature. “When people think of having a baby, they don’t think of their child being in a place where you need to ask doctors and nurses if you can hold your child, touch your child or bathe your child,” says Jodi Klaristenfeld, whose daughter Jenna was born premature. “ I also don’t think people realize just how difficult it is to leave your child in the hospital each night and come home to an empty house and empty nursery.” Trying to navigate life with a new premature baby – and the often intensive care that they require – is exactly what made Jodi want to start FLRRiSH: FLRRiSH offers coaching, support, and community for parents of preemie babies. The resource features resources like audio courses, group and one on one sessions, a NICU medical glossary, therapists by state, and more, and Jodi has seen first hand how much community, support, and empowerment has helped parents and their babies flourish. “There is such power in community,” she says. “FLRRiSH has helped parents feel less alone.” Below, we sat down with Jodi to talk to her about her story, the challenges of having a preemie baby, and how having FLLRiSH as part of your care team can make such a profound difference for preemie parents.
What kinds of unique challenges did you face as a parent to a premature baby?
There are many challenges when your child is in the NICU. For one, there is the uncertainty when and if your child will come home. More than that, when people think of having a baby, they don’t think of their child being in a place where you need to ask doctors and nurses if you can hold your child, touch your child or bathe your child. I also don’t think people realize just how difficult it is to leave your child in the hospital each night and come home to an empty house and empty nursery. Also, people don’t truly understand that your journey as a parent to a NICU child actually truly begins once you go home from the hospital. There are no monitors, 24-hour care from the hospital, and it is still very isolating. Once you get home, there are generally tons of doctor appointments and specialists that you need to follow up with aside from the typical pediatrician appointments. And let’s not forget that NICU babies still need support by way of early intervention. Trying to navigate the system to get your child evaluated and then get the services he/she actually needs is a full time job in and of itself.
What made you want to start FLRRiSH?
When we were in the NICU, I felt alone, scared, overwhelmed, confused and lost. I didn’t know how or what my journey as a mother would look like, what I would need in my toolbox as a mother to a preemie, and I didn’t know anyone else who had traveled a similar path. I had no one to turn to for support and counsel. All these gaps in the system from what is ostensibly the best medical system in the world led me to create what I wish I had during my time in the NICU and beyond.
I knew pretty early on after Jenna came home from the NICU that I wanted to do something in the preemie baby and family space–I just wasn’t sure what yet. I’ve also learned that big life decisions shouldn’t be made so soon after a major event (such as marriage or having a baby) so I sat with the idea and let it marinate.
It wasn’t until I watched Jenna on a daily basis with therapists that I realized how fortunate I was to be able to curate her team, and that I wanted to somehow transfer this same feeling of gratitude and empowerment to other preemie parents. I wanted them to feel supported and educated so they could put their children in the best possible situation for success. I also knew that there were a lot of parents like my husband and me. By and large, preemie parents are thrown into the thick of an incredibly stressful and overwhelming situation without anywhere or anyone to turn to for advice, assistance and support.
What kind of services does FLRRiSH offer?
There are many layers to the services FLRRiSH offers. The first is an audio course. These are 3-5 minute stories told by NICU parents and myself that are meant to support parents and give them a virtual hug. I picture parents listening and learning as they snuggle their precious little bundle on their chest during kangaroo care. I envision being a virtual best friend and guide to help those parents on the road less traveled. I want families to feel as though they have a friend watching over them during this most tumultuous time in their lives and let them know they are not alone. By sharing my experiences as a mom who has been in the “thick” of everything that is crazy and beautiful about the NICU, I will help those families make it through. Secondly, I offer one-on-one and group coaching. There is power in community. Some find there is a huge benefit in sharing their stories, fears, challenges and wins with others as another means to let them know they are not alone on their journey. Others, prefer one on one coaching as it is more in depth, more personal and more targeted to that parents specific journey. The goal, regardless of 1:1 or in a group is for parents to feel supported, understood and to realize that while the journey is more difficult than they might have expected, it is just as, if not more rewarding. It takes a positive mindset and a refocus of how parents imagined their parenthood journey would be. Lastly, there are resources in the way of therapists and specialists broken down state-by-state and county-by-county. I’ve personally sourced all of them and have only done 30 states so far, but I am getting there slowly but surely.
What is the NICU glossary?
When your child is born and goes directly to the NICU, you instantaneously become a medical parent. I often tell parents that I felt as if I earned a medical degree on the job. More than that, parents get thrown into a world of terms, acronyms, abbreviations and a whole vernacular they had not previously known. I created a glossary of the most often used terms that are broken down in a non-medical way. Google is a great tool when needing to find the answer to a question quickly and efficiently, but in the case of a preemie parent, Google can be the biggest hurdle and send parents down a rabbit hole. It happened to me, and since then, when it comes to anything related to my daughter’s growth and development, I do not Google anything.
Best piece of advice you can give to a new parent of a premature child or one in the NICU?
That is such a tough question, but I think the best thing is to not look too far ahead into the future. Break down challenges and tasks into small steps so that they become more manageable. When we look more globally, it is easier to get overwhelmed, confused and upset. Braking issues down into small incremental parts allows parents to take a proverbial deep breath and focus on the more immediate needs. That’s not to say it is easy by any means to surrender to a process where parents have no control, but it does mean, to stop, take a deep breath and focus on the here and now.
Top three things you’ve learned from your journey?
I have learned so much. In fact, my daughter’s birth changed the trajectory of my life and how I want to make an impact in this world by helping others. That said, here are three:
- Nothing can prepare you for preterm birth. I remember walking into the hospital the day my daughter was born and a doctor from the NICU, who would eventually become a voice of calm to my husband and I, asked me what my birth plan was. What kind of a question is that? What’s more, at that point, who cares? Most premature births are unplanned because they result from exigent circumstances (i.e. preeclampsia, issues with the placenta, fetal growth, etc) needing to get the baby out right away to save the mother, child or both.
- While a scary place, the NICU is also a very special and sacred place. When most people think about the NICU, they imagine a space with bells and whistles, babies crying, stressful situations and people shouting. While yes, monitors are machines that make noise and babies are fighting for their lives, by and large the NICU is a kind of sacred space. It is a place where moms and dads get to bond with their child for hours and hours on their chest while doing skin-to-skin (aka Kangaroo Care). Parents get to witness milestones, progressions and great strides firsthand. How great is that?
- Being a preemie parent will forever change you and your family. Becoming a parent is transformative for anyone. That said, being a parent of a premature child teaches you a skill set you never knew you had: empathy, caring, compassion, understanding and courage to name a few. More than all of these, having a preemie baby has further emphasized my own sense of optimism, faith, pride and joy in life. I have a new appreciation for human growth and development and I have learned to celebrate every victory, no matter how small it may seem. I look at my daughter and day after day I realize just how strong she is and how strong women can be.
Bonding advice for parents with babies in the NICU?
There are many ways to bond with your baby in the NICU. I often say that as a NICU mom, I got to bond with my daughter in ways that most people don’t get to bond with their children. And an added bonus is that dad’s can bond with their children too. Kangaroo care cuddle sessions are terrific. I am not sure who got more out if it- my daughter or me, and my husband would say the same. While I couldn’t nurse as my daughter was too small, I felt bonded to her simply by holding her on my chest, singing to her and reading her stories. I tell parents all the time, that when holding your child, tell them all about their family, how their family celebrates holidays and traditions, bring in photos and tape them to their isolette (if your NICU allows) so that they can see members of their family, and most importantly, just take in the precious moments of silence that surrounds you- often you can feel both your own and your child’s heart beating at the same time. If that is not magic, then I don’t know what is.
How does FLRRiSH continue to offer support and community after parents are past the hurdle of a premature birth and now have a healthy child?
The beauty about FLRRiSH is that there is so much potential for growth with families as their own children grow. Aside from educating, supporting and empowering while in the NICU, we continue following these same goals. The journey of a preemie parent doesn’t end once the baby comes home. FLRRiSH helps parents by partnering and collaborating with them. We provide knowledge and tools for navigating a complex journey. We offer emotional support for fatigued parents, and knowledge that empowers parents and fosters informed engagement with hospital and school teams. And we do all of this with candor, patience, encouragement, empowerment and empathy. By sharing stories, FLRRiSH is the helping hand parents need during their overwhelming journey of parenthood.
How can friends and family support a parent going through the birth of a premature child?
I just did an IG reel about this very thing. People don’t realize the power of their words and how they might impact someone, especially someone who is stressed out, tired and confused. That said, truly ask the parent “how they are” and mean it and wait for any explanation, no matter how long or short; offer to drop off meals at their house or help do regular tasks around the house. Additionally, ask your friend to do something he/she used to enjoy, whether it is getting a manicure, going for coffee or shopping. Sometimes doing something that is “normal” means so much, even if it is quite small. Any small positive gesture truly makes a big impact and goes a long way. Let your friend know you are there for them and truly support them.
What kinds of things have your clients told you that made you realize you have made an impact on their lives?
I realize I am making a difference each time I communicate with a parent. Even before starting FLRRiSH, I found talking to other parents very rewarding. Now, when I talk with a parent, whether it be talk, text or email, hearing their “voice” smile, hearing them say, “thank you for making me not feel so alone” and “thank you for helping me enjoy being a parent”, it fills my heart with gratitude. When parents say they feel comfortable talking to me and that I “get it” as it relates to their fears, obstacles, and concerns, and that they now feel they can put one foot in front of the other, I can’t ask for anything more. When I make someone else’s journey less stressful and difficult than my own, then I know I have done my job.