My labor was relatively short and uneventful. When the doctor handed me our 8 lb. 12 oz. son to hold, I remember thinking how fortunate we were to have two healthy, perfect children. The next morning the doctor thought Matthew looked jaundiced and ordered some blood tests. The nurses had difficulty drawing blood and I remember being upset at the number of times they stuck him. "Did his difficulty in bleeding have anything to do with his blue nailbeds?" we asked "No," we were reassured, "It was perfectly normal." Later that day we were discharged from the hospital. Matthew had not been very interested in nursing, though I was not yet concerned.

Jim, my husband, and I were anxious to get home. I remember the excitement of pulling into our driveway with our new baby in the backseat sleeping. The neighbors and my parents rushed out to welcome us. The phone rang all afternoon with family and friends calling to congratulate us. It had been a long, hot summer and the heat was finally starting to let up. As I laid my baby in his crib, I cried tears of happiness. Everything was perfect.

Matthew had been sleeping all afternoon. I couldn't wake him to nurse. I still thought he was just "being a newborn" until he woke up crying in a cold sweat, breathing rapidly. At the urging of my mother, I called my pediatrician. She told me to bring him in immediately. After a brief examination, she told us she was going to readmit Matthew to the hospital for some tests. I wasn't afraid until she told me she had called an ambulance to transport us. After all, I thought, he was so big and looked so healthy. How could he have grown like this in my womb if something was seriously wrong? I had had excellent prenatal care, didn't drink or smoke during my pregnancy and hadn't taken anything stronger than Tylenol.

At the hospital, the neonatologists told us they were going to check for common infections found in newborns. We were shown where to wait, but through a window I could see that my baby was struggling to survive. His breathing was fast and heavy, and his chest was pounding so hard in his desperate struggle to get oxygen into his system. Finally the doctor came out to give us an update. Matthew was free from infection, but he suspected heart problems, and had called in a pediatric cardiologist. Jim and I looked at each other, not believing what we had heard. Babies don't have heart problems. That only happens to adults!

It seemed like an eternity before the doctors sat us down to explain Matthew's problem. Our baby was diagnosed with Hypoplastic Left Heart Syndrome. Matthew's left ventricle did not form and his precious heart could not sustain his life. While the doctors tried to explain the problem with Matthew's heart, the only thing I could hear, over and over, were the words of the cardiologist: "This condition is 100% fatal." I know at this point that my whole body and mind were in complete shock. Thankfully Jim still had his emotions under control and was able to listen while the cardiologist explained the three options we had.

The first option was a series of surgeries called the Norwood procedure. During the first three years of life three different open heart surgeries would be performed to try and restructure and rebuild the heart by redirecting the flow of blood. The second option was a heart transplant. The final option was called "compassionate care" meaning we would bring Matthew home to die.

During the next few days Jim and I made several phone calls trying to learn more about transplants, the Norwood procedure and insurance matters. This wasn't easy because it was the start of Labor Day weekend, and everyone we needed to talk to was on vacation for three days. There were two things I remember our cardiologist saying. The first was whatever decision we made was the right choice for us. There was no wrong answer. The second was to remember that we had another child at home to consider. How could I ever come to a decision? I wanted my baby to live but I didn't want him to suffer anymore.

It had been four days and Matthew hadn't opened his eyes. His chest pounded with every breath and he would frequently cry out in a whimper. I wanted to absorb his suffering and breathe for him, but there was nothing I could do. It was during these days that Jim and I ruled out the Norwood option. We thought we couldn't endure three open heart surgeries and three years of waiting, unsure of what Matthew's quality of life would be like. Jim tended to look at the facts and tried to calculate the odds. His main thought was that we had to give Matthew quality of life not just prolong his life. Now we were concentrating on the two remaining options: transplant or compassionate care.

Finally the doctors allowed me to hold him. I sat down while the nurses handed me my baby and all his IV tubes. I watched the monitor as his elevated heart rate dropped and he finally settled down. I was overjoyed that I was able to comfort him -- that he responded to his mother's touch. As I sat there rocking him I began to feel his strength. I knew at that time that Matthew was a fighter and wanted a chance to live. There was no way I could hold my child and watch him die in my arms. This option is right for some people but it wasn't right for me. The previous nights I had prayed for God to take my child so I wouldn't have to make this gut wrenching choice. Today I boldly told God that He had His chance-now it was mine.

I left the hospital to go home and tell my husband that I had finally reached a decision. Jim agreed, and we announced to our families that Matthew was going to be listed for a heart transplant.

The next day Matthew and I boarded a "flight for life" plane to Denver where Matthew would wait at Children's Hospital for his donor heart. The first infant heart transplant was performed only 10 years ago at Loma Linda in California. The heart transplant program in Denver started only five years ago, but they had an excellent reputation and were doing as many transplants as Loma Linda. We had great confidence in the transplant team and hospital we had selected.

There are a lot of hospitals starting heart transplant programs that claim to have short waiting periods for donor hearts but we opted for Denver because we knew Matthew would gain from others' experiences. We learned that the surgery was difficult but the follow-up care was critical. We also liked Denver's non-invasive approach to treatment while the kids waited for donor hearts. They didn't put them on respirators or a lot of drugs, let them drink from a bottle and encouraged family participation.

After Matthew was settled in at the hospital, it was time to move the rest of my family. When we agreed to list Matthew for a heart transplant we were told to settle in for a 3 1/2 month wait for a donor heart. After the transplant, we would have to stay in Denver three months with no rejection. This meant living in Denver for at least seven months. Our home was in Wichita, Kansas.

We rented an apartment in Denver where I lived with my mother and 19-month-old daughter, Megan. My mother left her home in Florida to help me care for my two children and without her help and commitment, we could not have done this. Jim was going to continue working in Wichita and fly in on the weekends to be with us. With all this upheaval, I was comforted in the fact that Denver was not a strange city. I had gone to school at the University of Colorado in Boulder, and a few of my friends were still in the Denver area. Nonetheless, I was guilt-ridden that Megan and her daddy would be separated for such a long period of time. People wondered if our family could survive this separation.

While Matthew waited at Children's Hospital for his heart, he was kept alive by an intravenous medication called Prostaglandin which kept open the duct that allowed blood flow out of the heart. I continued pumping, believing that my breast milk would help Matthew to grow and stay free from infections. My mom and I took turns at the hospital caring for Matthew while the other stayed home with Megan. We were able to bathe and feed Matthew but mostly we just held him and loved him. We knew he knew us because he would cry as soon as either my mom or I walked into the room and he heard our voice. We brought Megan in for visits a few times a week. Her baby brother was very much a part of her life.

None of the doctors were able to give us a reason as to what caused Matthew's heart defect. It is not a hereditary condition. The only explanation they could give is that the fetal heart forms within the first few weeks after conception and it was during this time that Matthew's heart did not form correctly. I never questioned "why Matthew?" or "why our family?" Rather, my question was "why do all these innocent children suffer so much?" There were some days when I would walk around the hospital and cry for all the children I saw.

As the months dragged on, Matthew stayed fairly healthy and managed to grow and gain about six pounds. In time, however, he grew very weak, and the wait was beginning to take its toll. The doctors told us that the longest an infant had waited was 3 1/2 months. I never thought we would wait that long but we were nearing the middle of December and I was wondering if we were going to set a new record for the longest wait. It was hard to sit at the hospital everyday and watch Matthew deteriorate but I had to be there for him. I knew he felt our love and this kept him going. Still, everyday was a struggle. When I woke up each morning I was happy Matthew was alive, but I was saddened that he would have to fight to live another day. It was a struggle for everyone and absolutely the most difficult period of time for our entire extended family. Our transplant coordinator told us the waiting was the worst part of this whole ordeal. As usual, she was right.

On a Sunday evening in December, a friend stopped by the hospital to visit. While she was holding Matthew, the nurse came to tell me the transplant coordinator was on the phone. It was the call for which we had been waiting nearly 3 1/2 months! I was ecstatic that Matthew would finally get his chance, and then I cried silent tears of grief for the family that lost their 3-year-old child. "Thank you" seems so trivial but I can find no other words.

Early the next morning Matthew underwent a grueling nine hour operation. By the grace of God and hands of a skillful surgeon, Matthew survived the operation. When we were finally able to see him, we could hardly recognize our baby under all the IVs, tubes and pumps. Matthew was on a respirator but the biggest obstacle was that they were not able to close his chest cavity because of all the pressure in and around his lungs and heart. His heart was covered with a Gore-Tex patch but his body was pink! During the first night the ICU nurse told us she had administered 24 drugs in 12 hours.

Four days later the surgeon was able to close the chest cavity. One by one the tubes came out and soon Matthew was moved out of ICU. Babies are amazing. Someone told me you can watch them and actually see them healing. This is true.

Matthew's surgery was more complicated and his recovery more difficult because of the long wait for a donor heart. Matthew's roommate, who had waited only half the time Matthew did, received his donor heart two days after Matthew, and was out of intensive care two days before Matthew. In spite of all the difficulties, Matthew recovered and grew stronger. Only 11 days after surgery, we were able to bring our baby home to our apartment in Denver. His strength and patience through all of this will always be an inspiration to me.

On March 12, three months after surgery, we packed up our apartment in Denver and brought our baby home. Matthew is followed by an excellent pediatric cardiologist in Wichita who follows Denver's program.

It has been fifteen months since Matthew's transplant. He has had no episodes of rejection and to look at him you would never know what he's been through. He walked on his first birthday and keeps up with his three-year-old sister. However, this ordeal is not over. Matthew will be on medication that suppresses his immune system for the rest of his life. These medications are necessary to prevent his immune system from attacking his new heart, but unfortunately leave him more susceptible to infection.

When we initially brought him home from the hospital, Matthew was on five or six medications. One of these medications was not available a year ago and the others have been improved upon. I know they are making headway in this field. One by one the medications were reduced until we were down to two immunosuppressants: Neoral (cyclosporine) and Imuran. Denver does not believe in putting the kids on steroids unless they have a rejection episode.

We recently returned from a trip to Denver where Matthew underwent a biopsy. This is done in the Cardiac Catheterization Lab where they thread a catheter through the vein and artery in his leg up to his heart. They actually take a piece of tissue from the heart, measure all the pressures and shoot contrast in the arteries to make sure the heart is pumping well. Matthew received a clean bill of health and his biopsy came back negative. With these results, Matthew was taken off the Imuran and is only on one drug, Neoral. We won't have to do another biopsy for two years! Our regiment will now consist of visiting the cardiologist here in Wichita every four months for an echo and getting labs every other month to check the level of Neoral in his blood.

As for me, the worry is always there in the back of my mind and I'm told I will carry that with me for the rest of my life. We don't know what the future holds. The oldest living infant heart transplant patient is only ten years old. We try to treat Matthew like a normal child. We're very conscious about washing our hands frequently and keeping sick friends away. But I know our son is special. So when I was writing this story and Matthew brought me I book to read, I saved my file and sat Matthew on my lap. Everything else can wait, my baby wants me to read him a story.