Parenting Mighty Littles: Parenting from the NICU and Beyond

Ella was born at 28 weeks. She made her dramatic entry in a hospital bed, stuck in a hallway trying to get mom to the delivery room. Mom maintained hope throughout her pregnancy, evan against all odds.

For Episode 7, Julie Cullen joins me to talk about trauma. She is a Licensed Clinical Social Worker who has her own private practice in Massachusetts.

When we talk about trauma, we typically think about specific events. A death, a robbery, a car crash. Looking at developmental and complex trauma, this is really looking at the way complex environments affect us as we develop. This could be medical events, divorce, pandemics - all of these events can have an impact on us. Trauma feels heavy. But we all struggle with something and this discussion of trauma can be applied to any struggle we have in life.

For something to be traumatic, there really need to be 2 key elements:

-The event must be perceived as life-threatening.

-The person needs to feel a loss of control. These are the thoughts of “how it is supposed to be” vs. “how it actually is”.

For families going through trauma, whether it is NICU or divorce or pandemic, things can absolutely be hard and overwhelming, but there are positives as well. Two things are true at once. If you get stuck thinking about and wishing for “ how it is supposed to be”, you can not move forward and live life now, as it is. We discuss a few concrete actions you can take to ensure you don’t get stuck in “How it was supposed to be”:

-While you don’t have control of the situation, you do have control over how you react to the situation

-Use social media wisely. Use it to support you, not bring you down.

-Building relationships is key. It allows you to trust those how are supporting you.

-Self-care. Not luxurious care, just self-care. Self-care gives you the energy to respond to things thoughtfully, not react to events emotionally.

Here are a few resources Julie recommends to families.

The Body Keeps The Score: Brain, Mind, and Body in the Healing of Trauma by Bessel van der Kolk

The Highly Sensitive Child by Elaine N. Aron

The Explosive Child by Ross Green

Beyond Behaviors by Mona DeLaHooke. www.monadelahooke.com

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For six minutes before he was born, Clayton’s heartbeat was too low. After birth, he required help breathing and his body showed evidence of stress and a lack of oxygen. In this podcast, his mom joins us to tell their NICU story, describing their stay and how they managed to enjoy their baby even with the chaos, uncertainty, and stress around them.

Robin Rosenberger started making capes for kids in 2012, and it has evolved into her life passion. She is the founder of Tiny SuperHeroes, a company that creates capes for children. The Tiny SuperHero capes help empower kids who are overcoming hardship or disability. To date, they have given more than 60,000 capes to children all over the world.

Robin sees these capes as a symbol of courage and strength. Once a child receives a cape, they are part of the TinySuperHero Squad, a squad that has become professionals in spreading hope. Kids have opportunities to feel proud of themselves by participating in monthly missions that unlock superpowers - knowledge, curiosity, power, empathy.

What I love most is the way the capes act as an immediate ice breaker, inviting connection and breaking down barriers to connection and communication. Robin is on a mission to change the way the world sees children and adults with disabilities through her Tiny SuperHeros Squad. To learn more, sponsor a cape or nominate a child for a cape, click here.

For this episode of Mighty Littles, I had the pleasure of interviewing Cori. Her son Ricki was born at 24 weeks + 1 day. He weighed 1 lb, 10oz, and was 9 1/2 inches long.

NICU - day 2

Cori has become an advocate for mothers and premature infants, in part through learning to advocate for herself and her son. In this episode, she shares the details of their journey with Premature Rupture of Membranes, Preterm Labor, and Prematurity. She bravely tells her story in this podcast and walks us through her intuition regarding not feeling well and trying to find someone to listen to her. Ricki was in the NICU for 112 days and had to overcome complications including Grade IV Intraventricular Hemorrhage (IVH) and Bowel perforation without Necrotizing Enterocolitis (NEC). Through her story, you can hear how she and her husband dealt with difficult news, faced being given the option to withdraw support, and finding the strength and resolve to know what they wanted for their son and how to fight for their son.

Some of my favorite highlights from this episode include:

• Cori talking about how, despite being a mom for 16 days, she became a mother the first time she held her son when he was 16 days old.

• I have written about grief in the NICU before. And Cori talks about her process of grieving what you thought would happen in order to move to a mindset where you can be grateful for what you have.

• I love Cori’s description of how she was given a place in the NICU and shown that her role as a mother is important in the NICU.

• But what I love most in this podcast is how Cori describes their fight for “just one more day”. One more day to make it to viability. One more day to let the steroids take effect. One more day to be stable enough to tolerate surgery.

We also briefly touch on the healing aspect of touch, which can be so important in the NICU.

Ricki pulling tubes!

Going Home

After 112 days, on his original due date!

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In episode 3 of the Mighty Littles podcast, I interview Bailey Thoman. She delivered her daughter Chandler in June of 2019 after she was diagnosed with Pre-Eclampsia. Chandler weighed 530g and had an 85 day stay in the NICU.

Their journey begins…

Bailey gets transported from Wyoming down to Denver.

This interview is fantastic because we talk about many of the topics that no one wants to talk about:

• Bailey was open and honest about the anxiety that comes with a pregnancy after a miscarriage.

• The fear of leaving the NICU to “take a break” because if something goes wrong you will never forgive yourself.

• Why enjoying parenting and not focusing on the worst “what ifs” can be so difficult in the NICU.

• Googling in the NICU — Don’t do it!

• Post-NICU anxiety when taking a baby home.

My favorite thing that came out of this interview was Bailey discussing how you have to have hope in the NICU. This Mighty Littles project - the blog, the podcast, the book that is forthcoming - they are all intended to share stories of hope, courage, strength, and love. You never expect to be in the NICU or to face adversity with your child, but if you do, grab onto Bailey’s best quote in the podcast: “In the NICU you can’t live without hope”. I hope that this episode can bring some hope to you and your family if you are living in the NICU right now.

Words can not begin to express how grateful I am that Christie agreed to come on the Mighty Littles Podcast. Not only did she agree to be interviewed, but she did it with a complete leap of faith that I would share her story with honesty and integrity since she is the first person to appear on the podcast. She did a phenomenal job of showing just how real the emotions of the NICU get and answered my tough questions with heartfelt emotion. Everyone listening will get a glimpse of what NICU parenting entails.

The truth is, it is one thing for me - a neonatologist - to want to share these stories with you. However, it is another thing entirely for a mom to share her story with all of you; the love, uncertainty, fear and hope that surrounds a NICU stay. It takes an incredible amount of courage to tell your story to the world. It is through these stories, and talking about the emotion in the NICU that future families will have a clearer idea of what they are facing, and the loved ones who are supporting people currently going through a NICU stay will learn what is most supportive.

At the beginning of the podcast, Christie explains a little bit about her pregnancy and what led up to delivering William prematurely, weighing just over a pound. Christie beautifully describes her first glances and interactions with William after she was finally off of Magnesium and able to come over to the NICU to meet her baby boy.

Meeting William - “We got this mom!”

After discussing a few details of their hospital stay, we change directions and begin to reflect on their NICU stay now that William is 2 years old. We discuss privacy and connection - walking the fine line between not wanting to impose on other people’s NICU journeys while yearning for connection with someone who knows what you are going through. For every family facing a NICU stay with a tiny baby, certain fears hover over the first weeks in the NICU; the questions that no parents want to ask. In this interview, we talk about the fear of going home “empty-handed”. You can’t hide from it. You can’t ignore it. But you can’t dwell on it either. That fear provides perspective when things are going “just ok” and helps ground you when you are in the NICU to truly be grateful for each minute with our children.

My absolute favorite nugget of truth from Christie boiled down to a simple concept - the NICU is going to be worse than you think, but you are going to be stronger than you thought you could. I hope you enjoy this interview as much as I enjoyed talking with Christie about her experience. You can find Christie on Instagram @beyondthebeeps where she shares her post-NICU journey with other preemie moms.

The Mighty Littles Podcast is now available. This is a passion project of mine. By day (and night), I am a Neonatologist at a busy unit in Denver, Colorado. But I believe that NICU parents and non-NICU parents have a desire to feel connected and supported, to have their questions answered, and to have their fears and anxieties validated.

This podcast is intended to bring you real-life parenting stories, to help you connect with other mothers. We will bring you book reviews and interviews with parenting experts to help you navigate parenting with courage, confidence, hope, and love.

I hope you will follow along with Mighty Littles.