NICU Awareness Month

I may be late to the game here, but September is NICU Awareness month. Having experienced the NICU multiple times, I can honestly say nothing can prepare you for the rollercoaster of emotions one goes through, nor is there any way to explain it to anyone who hasn’t been there. It is truly something that can only be experienced. You feel like you’re in some secret society no one understands and when you meet someone who has been through it you get a little breath of relief because you’re reminded you’re not alone. 

This picture was the first time I saw the twins. I was starting to come out of anesthesia from an emergency c-section the night before. I will never forget that moment — the lump in my throat is swelling just recalling it now. Half awake, I asked Chris, “Are they alive?” He pulled out his phone and showed me these pictures, letting me know they were — they were so tiny — Bailey weighing in at 1lb 11oz and Hayes at 1lb 9oz. I remember feeling completely numb and totally overwhelmed at the same time, but too physically wore down to keep up. It had really happened. The twins were born four months early at 24 weeks. It was truly the beginning of a new life for all of us.

We spent 5 months in the NICU with the twins. Consisting of three surgeries, two hospital transfers, one devastating diagnosis and too many infections to count. It was some of the scariest and most confusing days of my life. As if becoming a parent isn’t already life changing enough, going into the NICU as a new parent is like a crash course in Survival 101 blind. Everything you thought, heard or expected about becoming a parent is being crushed…thrown out the window. Those pictures of mom holding her newborn baby all swaddled up in the hospital bed — not happening. You are in a whole new world now, the NICU world, but let me make one thing clear — you are not alone. 

There are so many resources now for NICU families. First and foremost, the nurses. We are so blessed to have had such an amazing group of nurses in the NICU, who set the bar extremely high for future nurses. We still keep in touch with many of them who not only cared for our children, but us too. They were an incredible example of how to care for and love with a Christ-like love on us crazy emotional parents and our tiny miracles. They were there every step of the way, explaining, guiding and supporting us during an extremely volatile time. Like changing a preemie diaper for the first time and holding your child for the first time, wires, tubes, machines and all.  They have a special place in our lives forever. 

We joke now that when I was pregnant with our third child, the twins talked up their stay at the NICU so much that’s why he ended up being admitted — all 9lbs of him. Although, going back to a place that was all too familiar, I felt like a total outsider with my giant baby. I’ll never forget being rolled back into the NICU, yet again, to hold him for the first time, 7 years ago today. What we thought would be our chance at a “normal” birthing experience — you know, the one where you go to the hospital, have the baby and leave the hospital with the baby at the same time — was just false hope. It was extremely disheartening having that loss of expectation again. Thankfully, we were only there for a week for a little “tune up,” but he made his point he wasn’t going to miss out on the NICU life he had heard all about and was going to keep us on our toes. I think it’s safe to say Bailey enjoyed the visits as much as the nurses enjoyed seeing her again.  

At the time the twins were born, I didn’t know anyone who had a preemie, but I did have a dear friend who worked in the NICU. She was immensely helpful on so many levels…even if it meant just coming and sitting with me — which there is a lot of time to do in the NICU. I can’t begin to express my gratitude for all those who supported us in and out of the NICU. I know it sounds cliché, but knowledge is power. Take time to learn about what is going on around you, read books, ask questions, find a support group, and let people help.

Here are a couple of helpful resources for me 10 years ago and a couple new sources.

The Preemie Primer was recommended to me after the twins were born. It was extremely helpful as it was written by a OBGYN who had preemie multiples in the NICU. So not only was it medically based, but offered real life experience as well. I highly recommend it to anyone who has a preemie or is in the NICU. In fact, if you know someone who is, just buy this book and have it sent to them.   

 

 

This book was given to me by one of our NICU nurses and I am so grateful. If you have not read any of the Jesus Calling books, please do. I still remember my time reading the daily devotional next to the incubators — what a blessing. There are other versions as well, Jesus Always: Embracing Joy in His Presence, Jesus Calling, 365 Devotions with Real-Life Stories, and some for kids as well. These are a couple of my favorites,  Jesus Calling: Devotions For Kids and Jesus Calling Bible Storybook. 

 

Mommies of Miracles Mommies of Miracles is the world’s largest virtual support group for mothers of children who have medical complexities, life-limiting conditions, or developmental disabilities. The mission of Mommies of Miracles is to eliminate the isolation mothers of exceptional needs children experience on a daily basis by providing an extended network of resources, products & services, grief support, family matching, and hope.

NICU Awareness Neonatal Intensive Care Awareness Month was established in 2014 by Project Sweet Peas, a non-profit organization. Project Sweet Peas is a 501(c)3 national non-profit organization coordinated by volunteers, who through personal experience have become passionate about providing support to families of premature or sick infants and to those who have been affected by pregnancy and infant loss.

National Perinatal Association NPA brings together people who are interested in perinatal care to share to listen and learn from each other. Our diverse membership is comprised of healthcare providers, parents & caregivers, educators, and service providers – all driven by their desire to  support and advocate for babies and families at risk across the country. Our shared purpose is to give voice to the needs of pregnant people, infants, their families, and their healthcare providers so that collectively we can have the greatest positive impact on perinatal care in the United States.

I hope you find this information helpful, whether it is for you personally or to support someone else in need. Please feel free to share any other resources you have found as well. Remember you are not alone on this journey and I encourage you to cling to your faith in times of fear. 

“Blessed be the God and the Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in affliction, with the comfort we ourselves are comforted by God.”  2 Corinthians 1: 3-4

Emily

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