Love, Loss, and Purpose in the NICU

When I speak of my NICU experience, sometimes I am brushed off.

Why? Because my NICU experience wasn’t a long one. It can make others uncomfortable.

​My NICU experience ended after 8 days. It didn't end in the joyous day all NICU parents look forward to for us. It was the second time that week we were told our daughter had died.

Just 7 days earlier our oldest twin didn’t make it either.

We stood there in shock as we looked around at all the isolettes filled with babies. Our monitors were silent, the screens turned off.

It was like a bad dream looking down at the tiny, fragile, body of my daughter laying there. No tubes, no monitors, just her looking just like her sister did 7 days earlier.

They carefully wrapped her in a blanket and handed her to me. I rocked her and held her close feeling her skin grow colder. I used every ounce of my will to try and warm her again, but it didn’t happen. Nurses and doctors came in and talked to us about various things. I really don’t remember much, I was too busy trying to memorize every detail of her face and hands.

I just sat there and rocked her. Rocking, rocking, rocking.

When it was finally time, I placed her back in her isolette. I didn’t really know what else to do.

What was I to do? They don’t really prepare you for this, nothing does.

I kissed her for the last time, and my husband and I left holding each other up.

I spent days in a waking coma trying to process things. Finally, I had to go through all the stuff from the hospital. All the gifts and other things sent to us.

As I was going through them, I found a green bag with Project Sweet Peas on it. At first, I had no idea what it was. As I opened it, I saw it was a memory box for our first born. It had a little hand mold in it of her hand, tiny diapers, a teddy bear with a Pregnancy and Infant Loss Awareness Ribbon t-shirt on it, forget-me-not seeds, and so much more.

My eyes welled up and I began to sob.

It was beautiful.

I spent hours holding that teddy bear. It helped fill a gap in my arms. Pulling myself out of my funk, I decided I wanted to add some handmade items to future boxes. I began painting boxes, and filling bulbs with glitter and feathers, cutting ribbon and making PAIL (Pregnancy and infant loss awareness) ribbons. I cut out butterflies I had painted, and I cut out scraps of fabric and made scent hearts. My husband would leave for work and come home and find me at the counter still painting and crafting. He didn’t mind though, it was the first thing that had gotten me out of bed in weeks.

Little did I know at the time, that the painting and crafting was slowing helping to heal my heart.

I eventually found a card inside the box and contacted the organization that provided the box to our local hospital, Project Sweet Peas. I was put into touch with Sarah. We talked about love and loss and how healing giving back to the community could be. I talked about our first born’s box and how much it meant to me. We met in the parking lot of the mall, I wanted to drop off the things I had made.

I didn't know why, but I was nervous. I had never met anyone else who had lost their only children before. I didn’t know what to say to her in person, even though, I too had lost all my living children at the time.

It’s ok though, we really didn’t have to do much talking, I was crying mostly and we hugged a lot.

After I handed her the items I had made, she handed me a bag. I was surprised, inside was another memory box for our second born. It matched the other. My heart felt like it exploded. More tears and more hugs followed. It was that day, and through Sarah’s kindness, that I decided to become a volunteer with the organization. It was hard at first, delivering the NICU care packages and memory boxes, but I never wanted what happened to me to happen to anyone else.

Knowing I was giving families hope, and comfort when they needed it most healed me in ways I didn’t know it could.

It got me out of bed and helped me to continue my life. It gave me purpose again.

Every day I live my life, I live it for my daughters.

Every time I give back to the community, it is a tribute to their beautiful lives. As I give back, their spirits are lifted and remembered.

Almost 9 years have gone by now. I still give back and create those memories, and give hope to the families of my community. I’m no longer just a volunteer helper, I am the Division Coordinator of the very local division that gave me purpose again.

They may not know it, but they saved my life. I hope that what I have done, and continue to do, helps save someone else’s too.