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What A Difference A Year Makes

The joys and fears of a preemie parent.

By Laura Biddle-Bruckman

On October 30, 1997, we welcomed into our family and hearts, our new, very tiny daughter, Grace Susan Victoria Bruckman. Actually, we welcomed a little baby that remained unnamed for a couple of days while we wrestled with the onslaught of many emotions. We later learned this delay was called "anticipatory grief."

Michael T. Hynan, Ph.D. at the University of Wisconsin-Milwaukee researches the emotional impact a premature birth has on the parents. Perhaps more important than his impressive educational credentials, he speaks from experience as a preemie parent. Hynan assures parents beginning the journey of prematurity that as part of the journey, the profound feelings of terror, grief, impotence, and anger are quite "normal." Normal, of course, is totally redefined.

According to Hynan, anticipatory grief happens "when we prepare ourselves emotionally for the possibility of our baby's death. To avoid being overcome by this terrible fear of death, anticipatory grief helps parents to prepare for the worst possibilities. Anticipatory grief is a natural reaction, and it has some benefits. It insulates the vulnerable high-risk parent from even greater pain."

Grace came to us differently than had our other children... gone was the predictability of a "regular" delivery, the two-day hospital stay with all the Jell-O you can eat. Grace was a "preemie." Actually, Grace was a micro-preemie, qualifying because of her diminutive size... Grace was born three months early and weighed one pound and almost four ounces -- for those of you "gram-friendly" people, she weighed 560 grams. She was just under one foot long. Imagine what her little body went through as she began what would be a literal fight... a fight first to survive, and then to thrive.

A couple of days after she was born, as the numbness, shock and fear settled in, we decided to call her Grace. We believed God's grace allowed her to come to us... and hopefully, our will would be His will and she would be allowed to stay. Grace seemed a perfect name for this amazing, albeit tiny, bundle of hope and promise. On reflection of this, Grace's Uncle Bryan remarked that he had been on his own spiritual path, trying to find the meaning of God's grace. He said, "I still don't know the true meaning of God's grace, but I do know that it is boundless." The hopes that we held for our Grace were boundless as well.

The Journey Begins

Perhaps because of the mind's ability insulate us from feeling the full impact of a traumatic event, the early days are difficult to recall. Looking back, once Grace was born, I never remember thinking that she would not survive; however, I do remember feeling paralyzed by the fear of the unknown. In the beginning of this experience, there is a mind-numbing sense of loneliness. People don't know what to say. People say the wrong things, not out of malice, but from a lack of understanding.

New to me were feelings of complete vulnerability and fragility. I felt as though I was always walking with my head down fighting back tears. I felt useless as I sat by Grace's warming table and listened to the hum of various alarms and machines. It was hot; I often felt ill. There were times when I would only stay a few minutes, fighting back tears as I left, only to feel guilty because I was not there.

We began to learn a whole new language and meet a whole new group of people, several of whom would remain treasured friends. We learned to call the Neonatal Intensive Care Unit the "NICU" - pronounced "nick-you." We learned to wash our hands and arms before venturing in. We learned the relative meaning of the various alarms that were hooked to our daughter and when not to panic. We learned a new way to balance our home time, our work time and our hospital time. We grew to understand that this would be our Grace's home for quite a while, thus it became our home too.

Rallying around us were our family and our friends. Many times we were also touched by the generosity of strangers. I remember weeping one day as I examined the isolette cover that helped keep light and sound out of Grace's plastic box. "Get well soon-Love, Nick" was cross-stitched near the bottom hem. Nick was a graduate of the NICU and his mother had lovingly made covers for the isolettes of babies that she and Nick would never meet. It touched me to know that they cared enough to make a difference in the lives of future babies who would occupy the same space that Nick had once occupied. I often thought of Nick and of his mom and said silent prayers of thanksgiving that Nick had made it out of there and was now a toddler. Nick's mom had also survived this journey and that gave me hope too.

At Christmas time, an ornament sat atop Grace's isolette-given by a family who had lost a baby who had been a patient in the same NICU. Later, through an odd twist of fate, I met the mother and was amazed at her strength and her positive attitude. She told me that making sure that every baby in the NICU had a "first Christmas ornament" was just her small way of giving back and of honoring her daughter's life.

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.

Brave Fighters

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. I have met Debbie, Rijon and Sarah-Sarah is also a 28 weeker. Debbie & Rijon made a special trip through Indianapolis from their home in Cincinnati, Ohio to visit Grace in the hospital. Debbie was one of the first non-family or non-medical personnel to hold Grace and to believe in her as much as I did. There's Kyle-Kyle was actually in the same NICU as Grace. His mom Marcia said in an email that "Grace was like a big girl watching out for the other babies," her last month in the NICU... Grace, a "big girl." How things changed. It fills me with joy to think that perhaps Grace gave someone else hope.

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."

The Victory Walk

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.

Our family is closer than we have ever been... always sitting on our shoulder is the knowledge that we really can't afford to sweat the small stuff. Sometimes we really do have to just surrender our control and rely on faith to carry us through difficult times. We have to keep advocating for our children and we have to maintain healthy relationships with others. We have to learn that sometimes bad things just happen and we are not bad people because they happen to us... Maybe we're even lucky because we get to learn and to witness and to hold and to touch one of God's biggest miracles... a miracle that started out so tiny. So now we can tell our story.

What a difference a year makes. To God be the glory. Happy first birthday, Gracie girl! We love you.

Laura Biddle-Bruckman created a website for Grace at http://www.geocities.com/Heartland/Valley/7553/index.html

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