Our NICU story

When I held my second child in my arms for the first time, I experienced something new. Feeling her nurse, spending our first night together, and taking her home with me from the hospital felt like small miracles over and over again. It was a deep reflection of God’s grace, and I’m so grateful that these “normal” moments are a part of my story. This wasn’t our story with our first birth.

After Jaxlee was born, I endured some of the deepest pain in my life. I was grieved by the uncertainty of her health and her future. If you know our story at all, you know that Jaxlee is a miracle. She’s overcome SO many obstacles and it shows with every new milestone. Her joy is contagious and her strength is inspiring. But it didn’t start out that way. Here is that story. 

Shortly after giving birth, holding my brand new baby girl, I stared at the sweet little face I had spent the last 9 months (or my entire life?!) dreaming about, just like every other mom. Having read all the books, I wanted to start breastfeeding right away. I asked the nurse to coach me through a proper latch as I attempted to feed my baby. I got her in the perfect swaddle, the right position and placed my nipple onto her ruby red lips. Nothing happened. Her mouth didn’t make that cute little suckling noise I had imagined, and she didn’t attempt to gesture toward my breast in a rooting manner. There was no flutter in her eyes or movement from her body. The nurse tried to wake her up by sticking her finger on her lips and into her mouth but she still didn’t suck. None of the books prepared me for this. 

At first, we were assured that she was probably just tired from the delivery and to let her sleep. However as time went on, nothing changed. She still wouldn’t eat, she wouldn’t suck, wouldn’t root or indicate any evidence of being hungry. This is when I started to panic. 

Late into the evening, the Neonatologist came in and told me and my husband that he thought Jaxlee should be admitted to the NICU for observation. 

This was definitely not something I was prepared for or even thought was a possibility. Shortly after the Neonatologist left, a team of medical professionals came into our room, and swept Jaxlee away. 

Jonny and I were left in the room with no answers and no baby. I sobbed as they took her out of my arms and into the NICU for testing and observation. I sat there, exhausted from the birth and delivery, overwhelmed with the feeling of loss. I felt helpless. I wanted to hold her, I wanted to kiss her, I wanted to smell her. But she wasn’t there; my arms were empty.

As soon as I got the green light, I walked over to the NICU to see her. I will never forget the way that place smelled and felt. It was a sterile room, with millions of cords and monitors. As I walked in to see her for the first time, I was devastated to see her hooked up to the machines and monitors. She had a Nasogastric (NG) Tube, an IV, leads on her chest, and pulse pads on her feet. What happened to my baby? 

I held her for as long as I could– until the nurses told me I needed to go back to my room and get some rest. They could tell I would have been there all night if they allowed it. I had to say goodbye to her for the second time that day. My heart shattered as I left her. 

I went back to my room, and did the only thing that I could do: I started pumping. I knew that if I started pumping and could get my milk going that Jax would be able to get my milk through her tube. After I finished, I cried myself to sleep.

First thing in the morning when I woke up, I went over to see Jax. I had missed her so much and my arms couldn’t wait to hold her again! I brought all my pumping supplies with me, and I was prepared to camp out there all day. I wanted to hold her and be with her every minute I could! 

This started our first routine. It gave me a small sense of control as her mom to care for her, and I committed to it with every fiber of being. I would go back to my room to use the bathroom, or to eat a quick bite but as soon as I was done I would hustle back to the NICU. 

After a few days of that first routine, it was time for me to get discharged. One of the layers of trauma in having a child go to the NICU is that at some point, you have to leave the hospital while your baby stays. It goes against everything in you as a mom. I was dreading it. 

The medical staff wanted me to go home and rest, which felt so backwards. How could I rest knowing my baby wasn’t doing well? They insisted I go home to at least shower. So they loaded me up in the wheelchair and wheeled me out. Sobbing, empty handed, listening to “Lord I Need You” by Matt Maher, Jonny and I left the hospital without our sweet baby girl. 

Jaxlee spent another three weeks in the NICU with some amazing nurses. We shuttled back and forth between our home and the hospital. Any time I wasn’t with her, I was pumping or doing whatever I could to mother her from afar. 

We eventually brought her home and slowly but surely adapted to a new way of life. It took two years for the doctors to diagnose her with Cerebral Palsy. It was a long time to live in such deep uncertainty, not knowing exactly what she needed. 

But early on we learned that, even in our darkest hours, we could find joy. Jaxlee’s smile can light up a room and any social media page. And it’s NOT just because she’s so cute! She shines with joy but also resilience. She has weathered SO much since those first few moments after she was born, and continues to move mountains every day. 

I’ve experienced deep loss in my life, on multiple occasions. But I believe when you endure deep pain and trials in your life it increases your capacity to experience joy and gratitude. 

When I look at my two girls, two sisters with very different stories, I can see just how true that sentiment is. We experience SO much joy in our lives because of Jaxlee, especially because of how hard she struggled and still struggles. And in the same way, we experience SO much joy with Braelynn, whose story is just as important in our family as Jaxlee’s, even though it’s different.

Wherever your story is right now, whether you’re a NICU warrior or going through your own loss, I hope you can experience the glimmer of hope in the middle of the pain. It’s there, even if it’s hard to see. 

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  1. Heather says:

    Thank you for sharing your story. My little sister spent 2.5 months in the NICU – which led my desire to become a NICU nurse. I love my job & am a mom of 3, but need to be reminded, every so often, what it’s like to be on the other side, as a mother & as one who has been separated from their child.

  2. […] also born with some difficulties that later led to a Cerebral Palsy diagnosis. You can read about her birth story here and more about our family’s story […]

  3. […] Jaxlee was born and everything changed, I knew I couldn’t go back to my 9-5 and give her all the care and support she needed.  So I […]

  4. […] From the moment she nursed for the first time, I had this overwhelming sense of relief. This experience was truly different from my experience with my first baby (more on Jaxlee’s birth and first weeks of life here). […]

  5. […] many of you know, we dove headfirst into the world of clean living when our daughter Jaxlee was born six years ago. Our clean living journey was why I got into Beautycounter, and it’s why we are conscientious […]

  6. […] was born with Cerebral Palsy (more on her story here), and things like playing soccer, riding bikes, and even dancing seemed impossible for her. I […]

  7. […] kind of disorder in our family–I went all in on figuring out the best way to support her. (Learn more about Jaxlee’s NICU story here.) It was in this process that I learned, really vividly, how EVERYTHING pregnant women put in and […]

  8. […] a new business venture. It was rooted in a desire to clean our home and bodies of toxins, and to provide opportunities for Jaxlee to succeed, despite her health […]

  9. […] am proud to be a mother of a child with Cerebral Palsy. From our stint in the NICU when she was born, to learning how to communicate using her AAC device, and to her horse therapy, Jaxlee has moved […]

  10. […] Beautycounter Consultant almost five years ago, my goal wasn’t to have a fun side hustle. We had a baby with special needs and Jonny was gone for days on end on his journey to become a firefighter. I couldn’t work my day […]

  11. […] I couldn’t help but compare my child with theirs, and inevitably I would be devastated by the stark reality that my kid was nothing like the other kids her age, or even close to her […]

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