This is Chris. He was born over 20 years ago at 24 weeks (1 lb. 6 ozs.),b and we were in the old Legacy Emanuel NICU for 117 days before coming home around his due date. He had at least three crises during his first 7 weeks. First, his lungs were in danger of collapse and they didn’t think he would survive. Then he had a bad reaction to a drug, which resulted in cerebral edema and low flow to the brain. We were told he would have massive brain damage and we should discuss quality of life… but the next day he had another ultrasound, and his brain was totally normal! We thought we were in the clear, but then at seven weeks, a life-threatening infection scared us out of our wits for several hours. Amazingly, every time we faced a challenge, the NICU staff saved his life.
Chris was on the vent for about 5-1/2 weeks and was moved to nasal cannula for a few days, but went back on the vent until he was 7 weeks old. The hardest thing was not being able to hold him until he was 5 weeks old. Even then, we were only able to hold him once a day until his health was more stable. We coped by writing in our journal daily. We also stayed informed about our son’s health by reading his chart (not very common back in 1996), and established a regular routine for our visits that offered some structure. I dedicated myself to pumping, feeling at first that it was the only thing I could do to help Chris. We also sang to him— a lot! We earned a reputation with the staff as “the singing parents,” and even sang to babies whose families didn’t regularly visit (by request from the nurses).
He didn’t talk until he was 3, started wearing glasses at 3 because of ROP, suffered from bad reflux, and didn’t make it on the growth chart until he was in preschool. He had epilepsy until he was 16, and he has ADD. He taught us that he would do things on his own schedule, but my tiniest-in-the-NICU baby is thriving. He’s a sophomore at Pacific Lutheran University, adores music and pop culture, and LOVES life and his family and friends.
Looking back on my NICU experience and specifically Chris’ birth, it was one of the best and worst days of my life. Not only did it turn me into a mom, but it also made me wiser, more grateful, and more compassionate. It strengthened our marriage and encouraged us to appreciate the little things in life.
When Chris was born, we had few helpful resources. There was no online NICU community, and he was the only micropreemie on the unit for our first month. Together with a group of other NICU families, we founded Precious Beginnings- a group that supported NICU families for many years before it was disbanded in 2015. Our NICU community supported me through several miscarriages, and I’m grateful to have offered support to other families as they coped with their experiences, including heartbreaking losses. I am a huge believer in parents supporting parents because when you’re in the NICU, no one else understands what you are going through like another parent.
The NICU can feel like an experience that will never end, but life ultimately goes so fast—I cannot believe it’s been 20 years since we were in the NICU. I’ve always believed that preemies or other medically fragile kids have a unique sensitivity and appreciation for life. I’ve tried to use my NICU experience to help others in many ways and have had a lot of time to reflect. For my best advice on how to cope in the NICU, please take a minute to read my blog post, “Letter to a Micropreemie Parent.” (http://marie-everydaymiracle.blogspot.com/…/letter-to-micro…). I think many of the sentiments apply to any NICU family and hope my thoughts and suggestions will be helpful.
To read more about Chris’ birth story, visit http://marie-everydaymiracle.blogspot.com/…/happy-birthday-….