“Having a NICU baby is like being inducted into a club or society you didn’t want to be a member of. No one goes through their pregnancy thinking I want to have a NICU baby, that sounds fun.”
— Fellow NICU Momma
Changing the NICU Experience
My story this past year was a short-lived pregnancy, an intense week in the hospital, our baby girl’s early entrance, a long, drawn out NICU stay, and coming home with a preemie. During each phase, I had great support from family and friends, but during our time in the NICU, a special mom and organization entered our lives.
I was first introduced to Tracy and Connected Forever through one of our daughter’s Nurse Practitioners. Because I strongly believe in sharing your experience with others to bond and work through life, of course I was willing to meet this mom. I had no idea the impact she and her organization would have on our family and that we would find ourselves truly connected forever.
When the NICU Becomes Home
Although I’d heard of the Neonatal Intensive Care Unit before, I wasn’t overly familiar with the happenings in this unit. I had visited one years before when my best friend had her 24-weeker there. I also had a friend who was a NICU nurse. But that’s all it was to me, a unit in a hospital.
Until I had a micropreemie. Then the NICU became home.
It was like a dream. My new reality hit me for weeks. Friends and family constantly asked how they could help or what I needed. For the entire 126 days we called the NICU home, I don’t think I really knew what I needed or how I felt.
Disconnected
Some days I’d have a break-through emotion and would try sharing with my husband or a NICU nurse. There were a handful of days when I could articulate what I actually needed — usually having something to do with emotional support while I did a few nesting tasks at home. But most days, I was clueless and I dreaded the questions.
How are you? What can I do for you? Do you need anything? How’s Amelia?
Of course there was absolutely NOTHING wrong with these questions. And I’m so grateful to have had so many people caring for our family. But when you can’t even figure out what emotions are going on inside of you, simple questions like those become extremely overwhelming. And how do you explain that to people just trying to help?
Getting Connected
After a few weeks in the NICU, once the dust started to settle in my brain and I was on the mend, one of Amelia’s NPs told me about another mom, Tracy, who that NP had become close with during Tracy’s son’s stay there. She asked if I’d be willing to have the nurse share my number with this mom. Sure, why not?!
Later that day, Tracy texted me. We set up a coffee date for the weekend and I didn’t give it another thought the rest of the week.
NICU Mom Date
On the day of our date, I was anxious. I didn’t know whether I felt like sharing or not. Could I sit there and say nothing? No, that’s not like me 🙂 So I politely requested a black coffee, said a prayer for God to be with us and to give me the words I needed to say.
When I saw her, she hugged me, like I’d known her for years. I told her I wasn’t sure what to say or what she wanted to know. She smiled and replied, “Share whatever you feel like. Start wherever you feel like starting.” So I just started talking and I ended up telling her everything, starting from day 1.
A Deep Bond
As I shared, she nodded along, she teared up, she helped me fill in the gaps. She knew my story. She didn’t look at me with eyes glazed over as I recounted the medical details of Amelia’s first days of life. No, I believe she was reliving the early days of their NICU stay. For the first time, I didn’t feel overwhelmed with sharing. I didn’t have to over explain and it all rolled naturally off my tongue. It was the relief I’d been needing, and I felt like Tracy and I had been friends for years.
When I finished, I asked Tracy to tell me their story. Although different circumstances landed us in this unit, we both had tiny babies. And we had long stays (I didn’t know exactly how long my stay would be that day, but knew it would be months before going home), sick kiddos, lots of procedures. There was an unspoken bond like I’d never experienced between us. As we parted after that first meeting, tears in our eyes, we hugged and I knew then this momma would be in my life for good.
Support for NICU Moms
From that meeting, and continuing to build our relationship, I learned about Connected Forever. Because of her experience, and because of the kind of woman she is, she couldn’t just leave her NICU experience in her past and move on with her life. She knew she had to do more. And she did. She founded this organization with the goal of supporting other families so no one would have to go through a NICU stay or the loss of a child alone. Learn more about the mission of Connected Forever and the wonderful Pella Family here.
Celebrating Setbacks & Milestones
As the weeks went on, Amelia had both setbacks and achieved preemie milestones. More often than not, Tracy was the first person I texted other than my husband. Her response was always what I needed to hear. I knew she knew exactly how I was feeling in that moment. Knowing she’d been there, whether they experienced that same thing or not, gave me some sense of relief. Feeling the joy and love through her text messages was priceless during this time.
NICUties
Amelia was not supposed to be with us on Halloween. Her due date was 10 days later. Of course we considered the possibility of her arriving before then, but really didn’t think about planning a costume. And when she arrived 3 months before Halloween, we REALLY weren’t thinking about that holiday.
But Connected Forever thought about it for us. The organization had a special operation called NICuties to provide costumes for NICU babies all over the state. Tracy made a special delivery to bring a cupcake outfit to Amelia. The CF crew watched from the doorway as I laid the outfit on her and we all cried and hugged, oooo’d, and ahhh’d. These moms shared my joy of our daughter’s first Halloween.
It was such a special first holiday for our family and we were blessed to get to share our story and publicly thank Connected Forever. Check out our interview in the local paper.
Truly Connected Forever
Preemie life doesn’t end when you get discharged. Amelia came home with an apnea monitor, oxygen and long list of follow-up visits. Her dad and I had trainings galore, but we were still incredibly nervous. For 4 months, nurses had been caring for our daughter and they were ready to just leave her with us!
Again, Connected Forever showed up! Tracy, who I have since learned is my “peer mentor”, checked in regularly to see how we were adjusting to being home. And not just how Amelia was doing, but how mom was doing. We didn’t leave the house often since we came home during flu season and Tracy would show up with coffee, always respecting our lockdown rules. Another thing I’ll always be grateful for — not having to even explain why no one is allowed in our house!
We all have experiences in our lives that draw us to communities or organizations. Amelia’s stay in the NICU has drawn me to Connected Forever and I’ll continue to do all that I can to “pay it forward” to thank Tracy and those other moms who supported me when I didn’t know what I needed. Connected Forever is on a mission and I’d say they are doing exactly what Tracy set out to do only 5 years ago! They’ve changed this momma’s life and I’m grateful to have such a strong connection that allows me to look back on our time in the NICU as growth and truly a blessing.
To learn more about Connected Forever, and to hear more of our story, please check out their video.
