William's unexpected journey began about two weeks before he was born. I awoke to heavy bleeding and contractions and was admitted to the hospital. At that time, my physician believed that I was only 32 weeks into the pregnancy - still too early to deliver a healthy baby. I was first placed on magnesium sulfate. I felt so bad while this medicine dripped through my veins. After the magnesium did nothing to stop the contractions, I was given Brethine. This made me so jittery. My heart felt like it would beat right out of my chest. I was also given steroid injections to help mature William's lungs should he be delivered early. I was discharged home under strict orders for bed rest. Upon my follow-up visit, the doctor performed an ultrasound bio-stress test. William only scored a 3 out of a possible 10. At that point the decision was made to induce labor.

The night William was born I was so anxious. I couldn't wait to hold him, to make sure that he had all ten fingers and ten toes. I wanted to see who he looked like. I was nervous, I was happy, I was scared. I was every emotion imaginable all inside one body. I was concerned for William's health. I was terrified that he would not be able to breathe. I was afraid that he would be whisked away without seeing him.

At 9:18pm William made his entrance into this world. When he cried, I cried. I knew that he would be all right. William was the tiniest baby I had ever seen. His hair was gorgeous. It was a brownish red with golden highlights. His nose was so little; it reminded me of a button. William looked like a little man. When he was taken into the nursery for observation, I couldn't wait to get in there and hold him in my arms. William weighed in at 4 pounds and 4-1/2 ounces; less than the bag of sugar in my pantry at home. He was 18 inches long. I was so proud of him. William mesmerized everyone that passed by the nursery window.

On Monday morning William and I were released from the hospital. I couldn't wait to get my new baby home and for the visitors to start stampeding our front door. Life at home seemed normal. On Monday and Tuesday night William would not sleep unless he was on my chest. William and I slept on the sofa in the living room, just the two of us. I loved the way William's tiny little hands held onto my clothes so tightly. When I fed him, I loved the way his eyes would look into mine so lovingly. William was my angel.

On Wednesday morning William was scheduled to go to the hospital for lab work. He stopped breathing before we left. I was scared, but when I picked him up in my arms he appeared to be fine. I watched William's chest rise and fall as he breathed. I took William to the doctor to make sure that he was okay and to ease my mind. The doctor said that small babies born early sometimes forgot to breathe, but William should be fine. He wasn't.

We came home at approximately 3pm and William stopped breathing again. This time I was horrified. I picked him up and nothing happened. I held his tiny arms up hoping it would startle him enough to breathe. I turned him over. I started to cry. William looked into my eyes for help and there was nothing I could do. I started CPR and began to pray. How could God give me this child and then take him back?

The paramedics arrived and I rode with William in the ambulance. I cried all the way to the hospital. In the emergency room William's health started to deteriorate before my eyes while my heart began to break. I watched as the doctors and nurses probed with needles into his tiny veins as they performed test after test. On the pediatric floor I watched the monitors blink and listened to their alarms. I watched every move of the nurse continually standing over my baby to stimulate him to take a breath. William was moved to the neonatal intensive care unit because he required constant observation and attention. He was placed on machines that forced oxygen into his nose. William's tiny body became so tired that he was placed on a ventilator. This machine kept my baby alive for many days.

William remained lifeless for several weeks. We never knew what the next day in the NICU would bring. At this point, I became very territorial over William. I felt as if I was losing my place in his small world. I felt that I was being robbed of the very thing I was meant to be - his mother. I felt denied of my baby and my time with him.

William was continually undergoing lab work and I cringed each time I heard the doctor or nurse say that they needed to obtain more blood. It would seem that time stood still as we waited for the results of the test would it be fatal or not? I watched as William's frail body became more and more tired. His skin began to look translucent. I wanted so badly to pick William up and hold him in my arms to kiss it and make it better to somehow trade places with him. I could only hold William's tiny hand or brush his golden hair. While he lay in the baby warmer it felt like my heart was there beside him, dying. Not only did it seem that the life of my child was slipping through my fingers, but my dreams were slipping with him.

I would stand over William for hours at a time and cry until I thought I had no more tears left to cry. Then a nurse would walk by, touch my shoulder and ask, How are you doing today?, and then a whole new flood of tears would erupt. At times my face hurt so bad from crying, but who was I to complain of any discomfort?

Sometimes the nursery would become so quiet. During those brief moments when no alarms were ringing to notify the nurses that some baby was desatting or some baby was having a brady episode, I would think, "Why me? Why my child? What did we do to deserve this?" I felt so guilty - like it was somehow my fault that William was here.

Some days William did not want me to touch him. He would show his protest by desatting to very low numbers. Other days he wouldn't mind me touching his back or rubbing his hands. Those days I would rub William's hands so much that I was afraid that I would rub his skin off.

The doctors were baffled at William's illness and could not diagnose whatever was making him so sick. Finally, Dr. Wellman allowed me to hold William, tubes and all. I was scared to move, afraid that I would pull out his ET tube. I would rock William for hours at a time dreading the moment the nurses would take him and lay him back in the warmer. I had never seen any other parent in the NICU hold their baby that was on the ventilator and I knew that my new involvement in William's life might somehow be coming to an end. I felt that this was the doctor's way of telling me, I don't think your son is going to make it, so hold him and enjoy him. I was afraid to leave William's side, afraid of not being there if God decided to call him Home.

I was angry with everyone and everything. I resented the world and I questioned God. Who did He think He was and what cruel game was He playing?

Gradually William started to fight the tubes and he would try to pull them out. One Saturday afternoon I walked into the nursery to see the doctor and the nurses standing over William. My heart dropped. I feared the worst. When I approached William's bed I could see that his breathing tube was gone. The doctor told me not to get my hopes up that he might end up reintubating him. We stood over William and watched him breathe, his chest caved in with each respiration. His cry was so raspy. I continued watching him and his monitors. William's breaths began slowing down and became less frequent. His heart began to stop; his monitors began flashing and alarming. William was dying once again before my eyes. I wondered how much more William's weak, tired body could stand and how much more my heart could take. I watched as the doctor worked frantically over my baby and worked to replace the tube. For the moment William was okay.

In the days to come William made a remarkable recovery. He began breathing on his own without assistance. He began gaining weight. He was able to eat more. Finally it looked like William was going to make it. I counted the days down until William would be discharged from the hospital. On October 6th we again brought William home from the hospital. This time he sported an apnea monitor, my assurance that if he stopped breathing again buzzers would alarm and notify me in plenty of time to get help. Since that time, when I lay William down in his bed, I stop and stand in his doorway watching him sleep and staring at his back while it rises and falls with each respiration.

Over the past year I've watched William become a more beautiful, healthy little boy. I love him more and more with each passing day. When he looks at me and smiles, he melts my heart. When he reaches for me he makes all my cares disappear and when he puts his head down on my shoulder he makes the world stop. At night when I rock William to sleep I think of all those scary times at the hospital and I thank God for giving William to me and allowing him to live.

As a parent's perspective on having a baby in the NICU, I feel that it is important that the medical staff, and the rest of the world know what it is like to be where we have been - to live the life that we have been forced to live.

Even though you are working with these tiniest of patients everyday, you will never understand what it is like to be a parent of one of these babies, unless you yourself are placed in our positions. You will never comprehend the pain and anguish we feel. How the jealousy turns into pure anger toward your family and friends that are blessed with healthy children. How your own friends will avoid you at any cost because they don't know how to act or what to say when they see you. How your faith in God diminishes. We feel lost in a world that seems unbearable. Our hurt is excruciating. We, like our children, are fragile individuals.

We as parents or family members of NICU babies need your honest input. We need to know what the impact of our child's illness will be. We need you to explain in the simplest of terms. Please remember we are dealing with a lot of emotions. We need you to see our child through our eyes and not just another patient with a medical record number. When you make your morning rounds or give charge notes refer to our child by his or her name. Remember at all times that this baby is someone's son or daughter, someone's grandchild, someone's brother or sister. Most importantly, remember that this could have been your child.

We need your patience. We will probably ask you the same questions, several different times and not remember your previous answer. We need support groups readily available to us. We would like to be able to talk to other parents that have gone through similar experiences.

Most of all, we are thankful for your skill and knowledge in caring for our most precious gift. We will always remember the times we were in your NICU and everything that happened during those times will be permanently etched in our minds.

To the March of Dimes: Without your constant vigil in fighting to find cures and to prevent prematurity, birth defects and infant mortality, we realize that our precious little boy could have been one of the babies that didn't make it. We applaud you for all of your efforts for the past 60 years by providing lifesaving research and innovative prevention programs that have saved not only out baby, but millions of babies from death or disability.

After 16 months of telling William's story, the pain is never any less. When I think back to that sick little child, there were times that I didn't think he would survive. Other times I wondered what ill affects might linger. Today when I look at him, I'm thankful for a miraculous God, the technology in the medical field, the compassion of the physicians, the nurses and the technicians and the great organization of the March of Dimes that all played a role in William's survival.

You all are the ones who make our children's future possible. We can never thank you enough for the difference you have made in our lives.

Laura G. Schaffer
Maiden, NC

If you would like to share your experience with preterm birth, visit the March of Dimes Share Web site, an online community for families who have had a premature baby or a baby in the NICU.