Five years ago, our blueprint for life was thrown out of the window. It was shredded to tiny bits. I was six months pregnant for boy / girl twins. Life could not have been more exhilarating or more hopeful. Our nursery was painted, our twin announcement was made, and we were feathering our nest. Pregnancy was a beautiful experience until it abruptly ended with no warning signs in December of 2013. My water bag broke at 24 weeks pregnant. This is known as PRROM (premature rupture of membranes). I fought off my labor for two weeks in the hospital until our son Roman was born 15 weeks early. Our daughter Lucy Jolie gained her wings. We said goodbye to her and our lives were forever changed.
I officially gained entrance to some new clubs. These are not clubs that we dream about. They are clubs that most of us do not know exist.
The NICU Moms club. The infant loss club. The mother of a medically complex child club. The grieving club. There were more clubs to come, I just didn’t know it yet. I threw myself into these clubs and learned them fast. There was no time for orientation. I took action and put one foot in front of the other. I clutched onto my husband, we clutched onto each other.
We were cushioned by golden friends and family. They are the ones who showed up and stayed and fought with us. They brought blankets, cookies, and warm socks and they laid in my hospital bed. They helped to plan our baby shower while Roman was having his first brain surgery due to a brain bleed which caused hydrocephalus. They helped us say goodbye to our daughter. They texted us all day for updates and they found encouraging words even when it was looking truly grim.
They literally anchored us. These friends and family, they were our soft place to land.
Somewhere in the middle of this whirlwind, something else happened. I fell in love. I fell in deep, soulful, protective love for this 1 pound 11 ounce angel and all that mattered was his existence. My blueprint was gone and a new one formed: I was a mom.
I was a mom to this little piece of absolute miraculous joy. He was a tiny, gentle warrior child who exuded something that I could never quite put into words and I still can’t. His presence was so strong and his soul was so big. His enormous love carried me through those four long NICU months and two brain surgeries during that time.
He introduced me to the beeping sounds of the NICU, the warm incubator, the kangaroo care, and the team of doctors and nurses that become your lifeline to your child
I was strong and in survival mode.
I had only one goal: HOME.
4 long months later, we got our wish. Homeward bound.
We brought this little medically fragile, miracle baby home. To my own surprise, I wasn’t nervous. I was calm. We were home. We made it. He made it. We could bathe him and hold him and rock him in a rocking chair in his nursery.
New baby smell replaced the hospital smell. A crib replaced the incubator. My arms replaced the nurses arms. My voice replaced the doctors voices. Baby clothes replaced hospital gowns.
The blueprint was gone, and our real journey had started. I did not know how long this journey would be but I knew that I was holding a miracle. Every inch of me knew that this child wasn’t ordinary. So I let go of the blueprint. I embraced my child and I followed his lead.
Here are ten things I have learned from my NICU baby:
- Things do not go as planned. Sometimes our purpose in life is different and much bigger than what we imagined it would be.
- A disability isn’t what I thought it was. I’m not sure what I thought it was before but my child has several diagnoses and I do not live in fear of these. His spirit, determination and happiness has shown me that I do not have to live in fear of these.
- Living in the present moment is literally everything. This journey continues to teach me how to be in the moment and put one foot in front of the other.
- I have golden friends – friends who are with you in the hills and valleys. They have earned a place in my heart and in my life life that is indescribable.
- The small things really do not matter. I do not care anymore if I miss a work out or if I am paying a bill late. I truly do not sweat the things that I use to sweat and I am grateful for that.
- Patience really is a virtue. My preemie baby Roman was later diagnosed with hydrocephalus and cerebral palsy. He has taught me that great things come in their own time. Whenever he reaches a new milestone, it is a true celebration. I now know that something big is always coming after a long, hard waiting period.
- Faith is everything. I have always struggled with uncertainty in life. I like certainty. We all do. This journey continues to teach me to have faith in the process.
- Difficult things force you to be real. Our privacy went out the window when we entered the NICU. We announced his early birth, his twin sister’s death, and later we announced his diagnosis of cerebral palsy and hydrocephalus. I am happy to be transparent with others and I now am grateful that I don’t feel guarded in life in the ways that I once did.
- Not everyone recognizes a miracle when they see one. My child is learning to walk. He walks with a cane and sometimes a walker for longer distances. This is not a big deal for us; it’s our normal. We sometimes get sympathy stares or questions as to what’s wrong with him. This is not the majority of our experience, but it has been part of this process for us and it’s okay.
- There is more kindness in the world than I ever knew existed. People really do care. We have received more love, encouragement, and help from the community than I ever knew existed. We have felt held by the community through this experience and that has been truly healing and eye opening.
Kelley Lockhart Delaune is married to her husband Ronnie Delaune and has two sons Roman (4) and Remy (2). Kelley is a Licensed Clinical Social Worker who has been in the mental health field for 16 years. She received her Masters degree from Tulane. She owns a private practice in New Orleans that she opened ten years ago. She is passionate about her own family and about helping individuals and couples to heal themselves. In her spare time, she enjoys drinking coffee, writing, and CrossFit.