Joe's Story
We found out in March of 1999 that we were expecting our second child. We were thrilled to find out I was carrying a boy because there had not been a boy in my husbands family since he was born 26 year ago. We decided to carry on the family name by calling him Joe Malon Thomason lll.
When I was thirty weeks I went into premature labor. The doctor seemed to think it was because my baby was large. They sent me to have a sonogram, during which they saw he had clubbed feet. They also diagnosed me with polyhydroamnious, which is too much amniotic fluid. This explained my size, I had about twice the volume of fluid that a mother is suppose to have. I started having more contractions and was put in the hospital for a week to try to stop labor. While in the hospital, a fetal specialist performed a sonogram to look closer at our baby.He found several things wrong with him. In addition to clubbed feet his bones were too small for the rest of his body, and he had too much fluid on his brain. We were devastated at these findings. That day the doctors performed an amniocentesis and I was put on medications to keep me out of labor for a few more weeks. I was put on bed rest until I delivered. In a few weeks the amniocentesis results were in and showed excess genetic material but the doctors were not exactly sure which chromosome was affected. All we could do was wait until Joe came into our lives.
On the morning of September 30, 1999 I went into labor, three weeks early. I was not in labor very long before we met our angel. Joe entered the world not breathing, but before long the doctors had him taking a few breaths on his own. He was the most beautiful sight we had ever seen at a mere 4 pounds and 14 ounces. He had a head full of the curliest hair we had ever seen. After just a quick look and kiss, he was whisked away to the neonatal intensive care unit. After a while the nurse came in to tell us a little bit about what was going on with Joe. He had been put on a ventilator, and we were told he was hydrocephalic( to much fluid on the brain) and he was on many IV's. I was taken to the room where I spent the next few days and shortly thereafter the neonatologist came in to speak with us and we learned alot more of Joe's condition. He had clubbed feet, a condition called coloboma, which is an incomplete pupil, a partial cleft palet, and that the ventilator was needed because Joe's jaw pushed back so far that it closed off his trachea and esophagus. We later found out that this was probably connected to his chromosome disorder. We immediately wanted to know when we could see him. The doctor said as soon as the epidural wore off and I could walk. I said then we can go now. I was put in a wheelchair and carried to the NICU. After teaching us how to scrub in and told of the units rules, they finally let us see Joe. He was the tiniest most precious boy we had ever seen. I spent four days in the hospital and went home empty handed, that is the most painful feeling to have a baby and to go home without one in your arms. He spent the next two weeks in the NICU in our home town. While still in the NICU, the blood tests came back and we found out he had a chromosomal abnormality called tetrasomy 14. There was not much information about it. All we knew was that he was only the ninth reported case nation wide and the only one known of to live, the other eight were stillborn. He truly was a miracle baby. We were there every three hours for our visits and each time it was harder and harder to leave him. His ventilator was so tricky that we had not been able to hold him and the night before he was going to the children's hospital in Memphis,TN the doctors set up a time for us to hold him. We were so excited for a chance to hold him and the day seemed to crawl until the moment arrived that we could hold our little angel. I can't remember a more precious night. Holding him for the first time was wonderful.
He was transferred to LeBonheur Children's Medical Center in Memphis, TN where he would be for the next month to receive all of his surgeries. The first surgery was to place a shunt in his brain to drain the excess fluid. The next day he received his tracheotomy tube and for the first time was able to breath on his own. We watched him for the next few days hoping he would tolerate the trach, and he did beautifully. We were moved out of ICU into a special care unit. The next week he had another procedure to place a feeding tube. He passed every obstacle with flying colors. I was with him day and night for the entire month, I just couldn't leave him. My husband and I had to learn how to care for him so we went through training to learn how to suction, feed and how to care for his trach and g-tube. We both caught right on with no problems. We wanted him to be able to come home. On October 30, 1999 a very scared Mommy and Daddy started the two hour drive home with our precious son in tow. He had on the cutest suit for his homecoming that day. The next day was Halloween, and we had a preemie costume to dress him in. Imagine that! A friend of mine found it, it was a sweet pea and he was our sweet pea. He looked so cute in it. We were home three nights when his apnea monitor went off. He had stopped breathing and we were scared to death. We took him to the emergency room and were told that his sodium had dropped to 102 which is very low. He had started to retain fluid which caused alot of problems with his electrolytes. We were sent back to Memphis for a week. He was put on lasix to control the fluid retention.
We were home for two weeks and he got sick again, this time he had pneumonia, which he subsequently had two more times. The last time that he was in the hospital he got really bad one night and we made the painful decision to have no cardiac resuscitation orders written. It was the hardest and most thought out decision we had ever had to make, but we knew it would be best for him. He had begun to have seizures and they caused him to stop breathing. Within a few days he perked back up and we took him home December 23, 1999. We had so hoped to have him home for Christmas, and we did. That was the last time he was in the hospital.
He had been doing so well, not swelling anymore and he hadn't stopped breathing in weeks. I took him to the doctor every four days to check his blood to make sure everything was going well, and it was. His seizures were under control and he was coming along great. He was gaining lots of weight and had even begun to smile for us. Joe knew our voices and would watch as we walked by him. For Christmas he had gotten a Peaceful Planet Aquarium that quickly became his favorite and went everywhere that he went. He also had gotten a bit spoiled since we were able to hold him more. Which was fine.
The last couple of weeks he had started having very high fevers, which we were told was because of his hypothalamus not functioning correctly and nothing could be done about it. This also caused him to have a high heart rate. On February 3, 2000 I had taken him to the doctor for a preop for surgery the next Tuesday. He was having a procedure done to change the size of the trach. That whole day he had run a high fever and had a fast heart rate. Late that night the fever broke and his heart calmed down and he seemed alright and was sleeping well. The morning of February 4th I had gotten him up and fed him. I was getting him dressed when his alarm went off. The first alarm was the fast heart and then he stopped breathing. I grabbed the ambu bag and started breathing for him, but it would not work. I called 911 and they told me to start CPR. I could tell it was not working and was so tempted to lose control, but I had to try for him. During the time I was doing CPR he took the longest most peaceful breath I had ever seen him take and deep in my heart I knew it was his last. I performed the CPR until the paramedics arrived and they took over. They had been in his room for only a few minutes when they asked me if I wanted them to continue the CPR. I had no idea what to say, words would not come to me. The paramedic then told me there was no point because he was gone. That was the most empty helpless feeling I have ever experienced. We had known since his birth that there was a possibility that he would leave us, but we were not prepared. I don't imagine anyone ever is. On Sunday we buried our son. He looked so angelic and perfect that day as he will be forever. We dressed him in the gown that we had him baptized in. We decided that we dedicated him to God in it and now we will give him to God in it. Joe was a very special little boy who touched lives all over the world. He had a way about him, everyone who ever met him instantly fell in love with him. His story touched many that had never seen him. He had a very powerful gift. We know that he is whole and free and in our Lord's Kingdom and he will forever be perfect. We have an angel watching over us. We are proud to know we were chosen to be the parents of this very special little boy.
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