Cody and Another "Chance"
By Mom, Diane Smith This was to be a happy time in our life, and things seemed to be out of
control and complicated. After Cody was born, I was having complications and wasn't able to see my son. One of the nurses from the NICU was kind enough to take a picture of him and bring it to me.
It is a picture I will cherish forever because it's the only picture that we have of him with no surgical scars. Cody was one day old, and we still did not know exactly what was
going on. I vaguely remember the doctor coming in and discussing Cody's situation. He was to have exploratory surgery to determine why the suctioning tube used on Cody at birth did not go down as far as it
was supposed to. We finally got to see our son, and what a beautiful baby he was and so healthy looking! He weighed in at 6 lbs., 9 oz. and was one of the biggest babies in the NICU. The hardest part of seeing
him was not being able to hold him, but we were able to touch and kiss him as much as we wanted. It was time for his exploratory surgery. The longest hour of our lives
was taking place, and just not knowing what was happening was wearing on us. The hour passed, and no signs of the doctor. The surgery took a little over an hour, but they were able to find the
problem. He was diagnosed with esophageal atresia with a tracheoesophageal fistula. These words meant nothing to us because we had no idea what they meant. The doctor explained to us that Cody
was missing 2 cm of his esophagus and had an opening at the trachea. We still were not sure what all this meant other than he needed to have another surgery to repair the esophagus.
Cody was to have surgery at three days old to hopefully stretch his esophagus and meet it at the other end to make a complete connection and to close off the opening at the trachea. This would give
him the ability to eat like a normal child. Once I was home there was no time for recovery as I was up at the
hospital all the time and constantly calling the hospital when I was not there to find out how Cody was doing. He progressed very well, and we were able to hold him and start to feed him. It was a good feeling
seeing him drink from a bottle. We tend to take eating for granted. What is supposed to be an easy, natural task was a difficult and painful chore for a newborn.
Four weeks passed since Cody's surgery, and he was finally ready to come home. We had to have CPR training and learn how to take care of him. He was coming home on an apnea monitor, and we had to learn how to
operate the monitor. Having him on the monitor made me feel at ease, knowing that if something was to happen while sleeping, we would be able to help him. Our home was now complete with out son at home,
but we had no idea of what lay ahead of us. After being home a month, Cody was unable to drink from the bottle. Nothing was going down. Every time he took a drink he threw up his
formula. Not understanding what was happening, we rushed him to the emergency room and waited for the doctors to tell us anything. Cody was scheduled for an esophogram x-ray, which showed that he had
developed a stricture. He was on his way to have another surgical procedure called "dilation." Even though it was not open surgery, he was completely anesthetized and put in surgery for two hours. We
made it through another surgery and were very uncertain of Cody's future. We just hoped that it would get better and that he would do well. As Cody got older he did good and was able to eat baby food, but
congestion had become part of life for him, and sometimes it caused a problem. He had to take a drink of water after every two or three bites of food, and then he had to cough to clear out his lungs. Cody adjusted
to his new way of eating, and we were willing to try anything possible to make eating an enjoyable experience for him. Cody celebrated his one-year birthday and was starting to experience
difficulty eating. At the same time my husband accepted a new job, but it required him to live in Georgia for 2 ˝ months; therefore, whatever was happening with Cody I would have to face alone. The
surgeon requested a Nuclear Medicine Study to be done on Cody. He was looking to see if there was any esophageal reflux, for he felt that could be Cody's problem with eating. Cody has never had a nuclear
study done, so I had no idea what to expect other than being asked to bring books to read to Cody during the procedure. Cody was strapped down under a big x-ray machine and cried as loud
as he could. At the same time I was trying to get him to drink the Barium, and he didn't want to cooperate. The technician had to put a tube down his nose to inject the barium. I tried everything to keep him
calm…reading, talking, stroking his head, but he was mad and didn't want to have part of what was happening. The hour went by, and the x-ray was complete. Boy, do I felt really bad
for what Cody had to go through; and he still had to go back for another fifteen minutes. The weekend is coming up, and I won't know the results of the x-ray until the following week.
The doctor contacted me about Cody's x-ray results, and they were not good. He was diagnosed with esophageal reflux, and the doctor wanted to do a Nissen wrap (wrapping the stomach around the lower
part of the esophagus) to help control the reflux and to keep it from damaging the esophagus. Cody's surgery was scheduled, and his dad wouldn't be able to make it to the surgery. This is the first surgery
that I had to do without the support of my husband. My family was there, but it just wasn't the same. The surgery took two to three hours, and I paced the waiting room
once again waiting for the doctor. As I was pacing, the doctor entered the room and told us that everything was a success and that we would be able to see him soon. Cody was taken to ICU, and when I saw him
the only thing I could do was cry and try to comfort him as much as possible. The only person he wanted to see was his daddy, who was not there at the time. His voice was hoarse from tubes being down his
throat, and I could barely hear him. His cries were very low, and tears filled my eyes, but I just sat there with him holding his hand or caressing his hair. He was pretty comfortable with all the painkiller he
was receiving. He remained in ICU for two days and was ready to play on the third day. It's really amazing how children bounce back quickly. He was standing in his crib jumping up and down and wanting to run the halls
with the IV. Cody did well between the age of 1 and 2. He has had to have three dilations, and each one was a success. We just wished he didn't have to have anymore.
We were beginning to wonder if the surgeries were ever going to stop when we learned that we were expecting our second child. Cody was two years old at the time. The first thing we did was see a geneticist to
find out what our chances were of having another child with esophageal atresia. We were told that there was a three percent chance of having another child with esophageal atresia, so we felt pretty good about this pregnancy.
When I was 18 weeks pregnant I had the AFP test done, and the test came back as abnormal. The next step was to have an amniocentesis done. This would tell us if the baby had Down syndrome or spina
bifida. During the amniocentesis the doctor was looking at the baby, and he could never see the stomach, which he thought was odd, but said that it could be nothing. The results of the amniocentesis came
back as normal, except for the fact that my amniotic fluid was excessively high, which could be indicative of a problem. During the course of my pregnancy I had seven sonograms done due
to the concern of not being able to see the stomach of the baby. This was a pretty good indication that our son would be born with esophageal atresia, but we kept our hopes up that he was okay.
However, we had to look at the bright side if he did indeed have esophageal atresia. The only positive thing was that both of our children would have to be treated in the same manner when it was
eating time. They would have to eat the same types of food and have to chew and drink plenty of fluids, which is a routine that we were used to. However, we were not prepared for what was in store for us. It was deja vu, getting up in the mornings calling the hospital to see how Chance's night went and spending my days at the hospital. When Chance was four days old, I received a phone call at the hospital from
our babysitter. She said Cody was having difficulty eating. That was a very stressful day…from the hospital I was having to make all the arrangements with the doctors, to have x-rays done and whatever else
they wanted me to do. The babysitter was kind enough to bring Cody up to the hospital; thank goodness for her and my mom who were there for support. An esophogram on Cody indicated that a stricture had
developed. The surgeon had requested that Cody's surgery take place at a different hospital, where they were equipped for this surgery, so I left Chance and took Cody to another hospital. My husband met
us at the hospital and there we sat again in the waiting room, waiting to hear how things went with Cody. I was so tired of waiting rooms and wondering how my children were doing. I stayed the night at the
hospital with Cody, and how uncomfortable I was. I could not hold Cody, and all he wanted to do was lay on top of me. The nursing staff was very nice and pampered me with the understanding that I had just
had a child by C-section four days earlier. All night in the hospital I was calling the other hospital to see how Chance was doing. Cody was able to go home the next day, and I was not able to go and visit
Chance. I felt guilty and depressed with not being able to see Chance, but at that point my priority was Cody and to make sure that he was okay. I don't know what I would have done without my mother. She
was there for all the chaos in my life. She was my taxi and best friend. I really don't know what I would have done without her. Two weeks after Chance was born the surgeon performed the first
surgery of the three-surgery stage process (intercolon position). The esophagostomy (where the actual esophagus that he was born with came out of the right side of his neck) was performed. It was a
success, but we had a long road ahead of us. We were going to have to wait a year or until he weighed 20 lbs. When Chance was 4 weeks old, he was released from the hospital. We had to learn how to take
care of the G-tube, which, when he came home he had a catheter tube held in by one stitch until a tract developed, and then a regular G-tube would be put in place. To add more support to the catheter tube, we
would use silk tape and tape it to Chance and then around his G-tube. He developed a rash from the tape, and his skin was very sore and it became really difficult to use the tape. We finally switched to another
kind of tape, but we still had the same problem. He has very sensitive skin. It was very difficult trying to take the tape off, which is when we really had to be careful that we did not pull out the G-tube.
When Chance was discharged from the hospital, I still had two weeks of maternity leave, and it was the worst maternity leave. Chance hadn't been home a week when Cody broke out in chicken pox, and Chance
was then exposed. That was the last thing I wanted Chance or Cody to have. There was no time for resting.
As the months passed, things went well. Once Chance had reached the age of 7 months we started feeding him soft foods and crackers by mouth so that his taste buds would develop. It was real messy since
he had the esophagostomy. The food would run out the side of his neck, down the front of his stomach, and oh, his clothes would be a mess, but it was worth it to watch his face brighten up when he was
able to have something to eat. Oh how we take eating for granted. When Chance reached 9 months old he began to have gagging episodes. Those episodes would occur at anytime, and he would
have a rough time during the G-Tube feeds. We were lucky if 2 ounces would stay down. For a while we were having to feed him 1 ounce an hour just so he would get some kind of nutrition. The doctors
did not have any kind of explanation. He began to have chronic ear infections and was constantly sick. He was coming up to his 1-year birthday and close to having the surgery performed. The surgery had
to be canceled three times due to him being sick. He was finally well and the surgery was scheduled. It was the night before the surgery and we were staying the night at the
hospital waiting for tomorrow and wonder what was going to happen and how well would he do through the surgery. On the day of surgery we were all waiting for the time to arrive . In the
meantime the surgeon came in to talk to us and explain the surgery to us again. The scariest thought was that there was a possibility that he would not make it through the surgery. We were waiting in the pre-op
room, scared and worried. It was time for him to go back in the surgery room, and we were able to walk him up to the red line where no one is allowed to go past. I was ready to just run out the hospital
with him and just forget about the surgery. I was so afraid of not seeing my son alive again. There were lots of prayers said for his well-being. The surgery started, the pacing of the floors started, and the
anticipation of hearing any kind of word. The first hour was not so bad, but he was going into the second hour and then the third and fourth, and we were getting anxious. He went into the fifth hour of surgery and
still was doing good from what we heard from the nurses. The surgery was over, a little after five hours and all went well. He had to have a blood transfusion, but other than that he was okay. We were finally
able to go and see him in the ICU, and the sight of him was scary. His whole body was swollen, and he was on a respirator. I just held his hand and cried. There was no way I could look at my son without
crying. The anticipation of the surgery had come and gone, and we were hoping that he would soon be able to eat normally. This surgery was called the Intercolon Position. Two different pieces
of the intestine were taken out and connected at the stomach and up out the right side of the neck. The intestine was put outside of the neck and left out for 12 weeks, because it would shrink and would cause
more problems if it had been connected during the surgery. On the third day (Easter) after surgery, Chance's IV blew, and the nurses could not get the IV restarted. They had tried seven times when my
friend came in and we said a prayer for him and the nurses; on the eighth try the IV was successful in the head, of all places. Everyday he was making progress and regaining strength. The day
that Chance had his first bowel movement after the surgery was a day that all the doctors were excited. They now knew that the intestines were working correctly after being cut and pieced back together.
Chance was in the ICU for 8 days, and after his bowel movement he was able to go out into a regular room. We were one step closer to going home. He made a wonderful recovery and was ready to be
discharged after being in the hospital 2 ˝ weeks. It was nerve wracking having him home and having the intestine hanging out the side of the neck, and we would baby the neck area, but all went well.
It was time for the last part of the surgery, which was to connect the actual part of the esophagus that he was born with to the one that was made for him. The surgery was not as intense for us, but nonetheless
a surgery that our child had to go through. The surgery was completed within three hours, then back to the ICU we went. The hospital staff played a big part in our lives. We developed a
relationship with the hospital staff and were able to talk about other things other than medical topics, which made things a little easier. Chance's stay in the hospital was much shorter, 1 ˝ weeks, and we
were on our way to teaching him how to eat by mouth. Chance went through a couple of weeks of therapy, and the transition was really an easy process for him. At first he didn't want to eat a lot, but then we
couldn't keep him away from food. About a year after the surgery Chance was having difficulty eating, and the doctor had discovered through an x-ray that he had developed a stricture and had to surgically
go in and cut a piece of the intestine that was used as the esophagus, because it had basically died. We reached a mile marker when the G-tube was removed after almost
two years; however the hole in the stomach was not closing, and he was having a lot of drainage come out that was causing a burning sensation on his stomach.
We tried different procedures to get the hole to close. Finally, he had to have surgery after four months of trying different options. Chance went through some difficulties with eating, and he wasn't gaining any
weight. The doctors considered putting a G-tube back in and having to go to nighttime feeding. Within the family there are four great grandchildren that were born with
esophageal atresia/tracheoesophageal fistula. I have a cousin who had twins, and one of the twins was born with esophageal atresia/tracheoesophageal fistula, and another cousin has a son who
was born with esophageal atresia. It will rest on everyone's mind when one is pregnant not knowing if there will be another child born in the family with the same condition. The one thing that keeps me going is
that this is a fixable problem and my faith in God.
The day had come, our first child was on the way.. I never thought of anything going wrong, but it did. I
had been in labor for 19 hours when a C-section had to be performed. When our son was born, he was completely blue, and one of the nurses had commented that we had a baby Smurf. I didn't know what was happening other
than the doctors and nursing staff were working on him. Apparently he made a bowel movement inside my womb, and therefore he had to be suctioned out before he was able to take his first breath.
While suctioning him the doctor was shaking his head, "No"; I watched them whisk my baby off without me getting to see him or give him a kiss.
The first hour we had to wait for the exploratory surgery was nothing
compared to the three-hour surgery wait we were facing. Our imaginations ran wild on us wondering what was happening. Was he okay? What if something goes wrong? We had never had
such an intense moment as that one. The nurses were kind enough to give word on how he was doing and that everything was going good. Even getting this information
was still not comforting, knowing that your child is in some kind of danger. The time had come when we no longer had to imagine what was happening. The doctor came out and told us that the surgery was
a success and that the most critical stage was the recovery. After he was back up in the NICU we were able to see him. We walked into the NICU, but I was not mentally or physically prepared to see what I saw.
My three-day-old son had an IV in his head and one stuck in his heel. There was a tube coming out of the stomach for drainage and a chest tube on the right side of his back. His right lung started to collapse.
Cody lay there on a respirator for precaution, but it was a horrible sight to see the tubes sticking out of his mouth and a machine helping him breathe easier. It was not easy standing there looking at him and
feeling so helpless. The day after surgery he started developing jaundice, and when we went to see him, he was lying on his back with his eyes covered and under lights to help the jaundice. He was doing
well and breathing on his own after two days, and it was time for me to go home. The hardest thing about being discharged was having to leave my son behind.
The day came when it was time for our child to make his entrance into this
world. It was a very difficult labor, and I had to have another C-section. Our son was born at the weight of 5 lbs., 10 oz, and the NICU unit was ready ( we had a 3% chance of having
another child with esophageal atresia, so we named him "Chance"). We were okay with him having the esophageal atresia. We thought that since we had once, how much more difficult could this be? Well, we
both were slapped in the face when we found out that he was missing over half of his esophagus, and it could not be stretched to connect the two ends together. We never once dreamed that the problem would
be worse than Cody's. Once again it was time for me to leave the hospital without my child. Only this time it was more difficult to rest at home with a 2-˝ year old and him not understanding why I could not pick him up.
Life was getting back to somewhat normal, and everything was going pretty good until Chance was 2 months old and I had just given him his bath. He was lying in his bed,
and I turned to pick up his clothes. When I turned around he was holding his G-tube in his hand. I was stunned, and my mother's first reaction was (Cody, what did you do?), but it was Chance that had
pulled the tube out himself. We then rushed out the door with Cody and Chance to the emergency room. The surgeon had stressed to us that if the tube did fall out to have him in the emergency room within the
hour or it would require surgery to put it back in place. We arrived at the emergency room, and we had to wait in the waiting room for an hour. The tube had now been out for 1-˝ hours, and I was really upset
with the whole situation. I could just see him having a senseless surgery because they would not respond quickly. Once we were called back into a room, we had to wait another hour. I went searching for the
doctor and stressed my concern about the G-tube not being put back in within the hour. The doctor came in and reassured me that he was not going to have surgery and that a regular G-tube would be put in
place. I had no idea what was just about to happen. The doctor came in with the G-tube and all the supplies that he needed. The hole in the stomach was now completely closed, and I watched as the doctor put
jelly on the end of the tube and shove it back into the stomach. The pained look on Chance's face was horrible. I was crying with him wishing I could take the pain for him and upset that the doctor did not
have enough compassion to give some kind of painkiller before he just shoved that tube in his stomach. My son has feelings just as we do. There is no exception to the pain tolerance that children have to
endure. We finally left the hospital, and the first thing I did when we got home was give him some Tylenol to relieve some of the pain that he might be feeling.
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