By: Rachel Pearce, Director of Customer Service and NICU mom
Baby Elliot
I’ll never forget the day I got that call. I was in the kitchen making lunch when my midwife rang. I had recently had my 3rd baby’s sonogram about a week prior, and was expecting my midwife to call to tell me everything looked great with my pregnancy, and that she would see me again in a few weeks.
Instead, in a serious tone, she asked me if there was someplace quiet we could talk. She told me that the sonogram findings uncovered that my baby would be born with a unique birth condition called gastroschisis.
“Gastro…what?” I asked her to spell it out for me as I frantically grabbed a piece of old mail to write it on. I remember asking “Are you sure this is correct?” and “Is there a chance they could be wrong?”. Then I had to tell my husband: our baby’s intestines were outside his body through a small hole next to his belly button. He would need surgery right after birth, and we had to transfer care to a Dallas hospital with a high-level NICU as soon as possible. We had so many questions and what appeared to be no real answer until we could get in to see our maternal fetal medicine specialist.
From that moment, my pregnancy was filled with specialist visits, endless questions, and the constant weight of uncertainty. Meeting with the surgeon gave us some hope - he said that these babies are often delivered full term, and providing there are minimal to no complications, the closure surgery doesn’t normally come with life-long implications. He went on to say that providing Elliot with breastmilk was going to be crucial, because they do have a higher risk of NEC (Necrotizing Enterocolitis) a serious gastrointestinal disease that causes inflammation and in severe cases can lead to the death of intestinal tissue. He had never heard of a gastroschisis baby being able to successfully breastfeed, but encouraged me to pump milk for him if I could. I was crushed, but determined to do whatever needed to be done to provide breastmilk for him for as long as possible. *PSA - if you're not able to breastfeed and your baby is in the NICU, request donor milk!
Later that month, I found Ceres Chill while scrolling on Instagram. I thought it would be so great for transporting milk to and from the NICU. I ended up purchasing it during one of my middle of my midnight pumping sessions (because, of course), and it ended up being such a huge stress-reliever for the commutes. Here I am now as the Director of Customer Service for this company, helping NICU moms every single day. It truly is a full-circle moment!
But back to it...throughout my time spent in the NICU I learned some unexpected things. Being in the NICU wrecks you to your core and then little by little, day by day, you learn your new normal. These truths shaped my new normal.
Truth #1:
Nothing can truly prepare you.
After two healthy pregnancies and uncomplicated births, I never imagined facing a journey like this. What should have been a joyful season was instead filled with unknown after unknown. Most gastroschisis babies spend around 30 days in the NICU - but more severe cases can stretch into 8 months or even a year. When I first learned of Elliott’s condition, I cycled through every emotion: worry, hope, heartbreak, gratitude, confusion. Each day magnified something different until he was finally here.
Even with months to prepare, research, and brace myself, the truth is...I still felt completely out of my depth once he was born.
What I missed most was skin-to-skin. Being a NICU mom is hard enough, but not being able to hold your baby makes it even harder. I knew the benefits, I had experienced them with my other children, and it broke me not to have that this time. I couldn’t hold Elliott until after his closure surgery at a week old. My blood pressure was sky-high, and I remember thinking: everything will get better once I can finally hold him.
For any new mom in your life - NICU mom or not - bring her a meal, fold the laundry, clean the house, wash the pump parts. Take care of the little things so she can have the time and space to bond with her baby. Those small acts of help give her what she needs most - just simply being with her baby.
Truth #2:
Everyone is fighting a battle.
What seemed like another day visiting Elliott in the NICU felt like the worst day ever. It was Thanksgiving and my second born’s (Everson) 2nd birthday. We had just dropped two of my kids off at my in-laws and I just kept feeling terrible knowing I couldn’t be there for my healthy kids at home the way I wanted to.
My son had been in the NICU for 16 days, and I couldn’t shake the feeling that he’s never going to get better, and he’s never coming home. On what should have been a day of family and birthday celebrations, I was dealing with an overwhelming feeling of dread.
By husband and I stopped at McDonald's on the way home. When my order came out wrong, I went inside to have it fixed. When they gave me the replacement order, it was still wrong...and that was my breaking point. Something that might not have bothered me on any other day, was the last straw for me on that day. I cried in the middle of that McDonald's.
Of course, it wasn’t about the burger. It was the weight of fear, exhaustion, and heartbreak finally spilling over. That moment taught me something important: when someone lashes out or seems upset, it’s rarely about you.
Truth #3:
A mother’s intuition always wins.
Towards the end of our NICU stay, Elliott’s scar started to develop some redness showing signs of possible infection. With a round of antibiotics, we were able to manage it, but it persistently kept coming back when we were back home.
I mentioned it at a follow up appointment with our surgeon and he brushed it off as a nutritional issue. I knew in my gut something wasn’t right, though. On the way home I made a follow-up appointment with our pediatrician where she cultured his wound and was able to diagnose him with a hard-to-treat staph, MRSA.
Maternal instincts are a powerful tool that should be leaned into and trusted.
Where is Elliot now?
After 30 days of commuting two hours to the NICU, Elliot came home. He was miraculously able to nurse at least once daily and receive milk fortified with formula. He made an amazing recovery.
Elliot is a strong-willed, crazy 4 year old now. He is a warrior. I will never forget this journey. It changed the trajectory of my life - both positively AND negatively. But I got through it. And so will you.
Resources for NICU parents
The Collette Louise Tisdahl foundation
Dear NICU Mama Facebook Group
Dear NICU Mama Podcast
https://podcasts.apple.com/us/podcast/dear-nicu-mama/id1472457962
Dear NICU Mama Spotify playlist- Sisterhood Anthems
https://open.spotify.com/playlist/6AvwUalgSXoI8eGNjlBZka?si=3f3d3bf1c4e944d6&fbclid=IwY2xjawJG__hleHRuA2FlbQIxMAABHetnK-R9KqTZ3tyaJBjlw72yvWWBk06njRsITpcpPQBPlFawuWgMnqARZA_aem_VwicUksXXcw8-Zz2JSLtUw&nd=1&dlsi=b0c93a87a0344f68