I was nearly two hours from my home, I missed my two-year-old son Peter like crazy, and each day brought new concerns about my rising blood pressure and about Ben's lack of growth. To top it off, all of this took place in December, and spending the holidays in the hospital was a bit dreary, despite the efforts of my husband, friends and family to bring cheer to my bedside.

After many ultrasounds and estimates, it was decided that due to I.U.G.R. (Intrauterine Growth Retardation) Ben was not growing, and that his chances of survival would increase if he was delivered. Though our goal was to deliver on January 11, my birthday, Ben was born on December 28, 2001. He was ten weeks early, weighed 1 pound, 15 ounces, and was the most beautiful, perfect, tiny thing I had ever seen.

During the next four months, Ben remained hospitalized at both Riverside and Columbus Children's Hospitals. He underwent numerous procedures. Ben spent 10 weeks on the ventilator, was fed through a nasal gastric tube, and saw nearly every specialist at Children's Hospital.

Finally, at the age of four months, Ben came to live at our house! He weighed less than five pounds, still required oxygen and a feeding tube, remained on a monitor, and took several medications, but he was home! We were delighted!!

Once at our house, Ben began to cry more than usual. In fact, he cried 18-22 hours each day. At first, our medical team assured us that babies like Ben sometimes have a difficult time transitioning from NICU to home. Soon it was obvious that Ben's problems were a bit more serious than a rough transition. After five sleepless weeks for all of us, my husband and I agreed to re-admit Ben to Children's Hospital for tests. He was categorized as a "failure to thrive" baby, a label that I despise to this day. Ben didn't have a chance to grow at our house -- he was too busy crying!

Ben stayed at Children's for another five weeks, undergoing tests for diseases and syndromes we had never heard of. This period of time was extremely difficult and emotional for our family. Many of the syndromes that Ben was tested for had sad outcomes, such as a life expectancy of 18 months, neuro-muscular degeneration, and the like. Some test results were returned quickly, but others took several agonizing weeks or months. When he returned to our house, no real diagnosis had been made. We were very frustrated by this, but glad that Ben came home bigger, stronger, and on Valium, which mellowed him out and stopped the crying.

Ben became a happy baby. He smiled and laughed, and once his nasal-gastric tube was removed, he gained weight and got out of preemie-sized clothing. I'd like to report that Ben began eating on his own, but he became less and less able to swallow. As a result, he had a G-Tube or gastric tube surgically implanted in his stomach.

Ben seemed to be doing well after his first birthday, but when he was 15 months old, he started having difficulty fighting infections. On April 30, 2003, at the age of 16 months, Ben died suddenly and unexpectedly. Ben contracted pneumonia and sepsis, and after four efforts to resuscitate him, Ben died peacefully in my arms.

Still engulfed by our grief, we formed a team and participated in a March of Dimes WalkAmerica® event only two weeks after Ben died. Walking for prematurity was therapeutic. We continued to feel profound sadness, but seeing 73 friends and family members walking in blue, Ben's team shirts gave us a lift.

Since Ben's death two-and-a-half years ago, we have continued to walk and raise money for the March of Dimes. At this writing, Ben's Team has donated over $40,000 to help save babies. In fact, in 2005, Ben's Team was fifth in the nation for family teams.  Our efforts can't bring back the son that we miss and love, but hopefully will help other babies so that their families will not have to embark on a journey like ours.

Michele Hayes
Athens, Ohio