Connections with Other Preemie Families Gave Us Hope

The mother of a micro-preemie finds encouragement in meeting preemie parents online and in person.

By Laura Biddle-Bruckman

I have often said that had God appeared to me and asked me if I wanted to add the premature journey to my life's list of experiences, I might have turned Him down. But having survived it, the experience left me profoundly changed and, perhaps surprisingly, more at peace with myself than before. Everything else is relative to this experience.

We met other brave fighters along the way. The first little fighter I found was on the Internet - baby Anna. Thirsting for knowledge and desperate for hope, I searched the Internet and found a Web site for a baby who was similar in gestational age and size to Grace. Anna had a positive outcome after fighting for her life in a Virginia-area NICU. Her parents and I still correspond on a regular basis and baby Anna just celebrated her second birthday.

On the Internet is a virtual community of preemie parents who support each other, answer questions, cry, grieve and laugh together. We met Mike and Susan, parents of twins Michael and Jason. Michael survived; Jason did not. We did not attend Jason's funeral but we grieved with them nonetheless and then celebrated Michael's homecoming together.

We met Ariyanna - a beautiful baby whose mother Karen softly invited me one day to see her because she had started out as small as Grace. The first time I saw Ariyanna, she weighed just over three pounds - how far she had come and how much hope it gave me to see her. "This is what you have to look forward to," her mother said. It was hard to imagine then that Grace would ever be that big and healthy looking. "Big" took on new meaning.

There was Daniel - son to our friends Stephanie and Jeff. We met Stephanie before Grace was born - she was our genetic counselor when we had prenatal testing done to see if the baby I carried inside me had any chromosomal abnormalities. We discussed her pregnancy after Grace was born and at the time it was going well and her due date was in March. Little did anyone know when she visited Grace and me in November and December, that soon her son Daniel would be a neighbor to Grace in the NICU and that we would become far closer than we had ever imagined.

We met Cassie, who touched us all so very deeply and made us smile so many times. I spent many hours with her mom Katy in the NICU. We laughed and cried together and imagined that Cassie and Grace would grow up to be friends. I often passed Cassie's daddy John on my way in or out of the NICU and he always wore a peaceful, though tired expression. We were devastated recently by Cassie's death at 13.5 months old. It was a possibility that I never once considered and it took the wind out of me. When Cassie died, a light went out in all of us who have been on this journey. I miss Cassie every single day and I grieve with others who knew her and loved her.

There were many others families we didn't know but we heard both the lightness of laughter and the gut-wrenching sobs of anguish. We laughed and grieved along with those parents just the same. This is an experience that binds. The preemie experience is nondiscriminatory. It doesn't matter what color you are, how much money you make, how much education you have or what you wear. Inside that space-age-like, hot, noisy, technological maze of beepers and buzzers and gadgets and wires, we were all just parents... parents who have dreams for our children and who love our children beyond measure. We are all parents looking for hope. "Just give my baby a chance, dear God."

We heard updates of other NICU "graduates" and dreamed of the day that they would be talking about Grace's graduation. We planned Grace's "victory walk" out of the hospital-how we would take her over to the first area where she was placed in the NICU and pray that all the very sick little babies had an outcome like ours. Our last stop would be Dr. Hiett's office (the maternal fetal specialist) where we first contemplated the many hurdles that were ahead of us.

And after six months -183 days later - we had our victory walk. We left the hospital and did the first thing that felt normal...we took our baby home. Though still hooked up to machines and on oxygen, we could now all sleep under the same roof. Our family could finally be the first people Grace saw every morning and the last people she saw every night. She was finally mine. She was ours... our daughter, our sister, our granddaughter, our niece, our great-niece, our cousin, our neighbor...our miracle. On loan from God.