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 #176682  by SlydinClyde
Some may not want to read this but for those who would like to his story and struggle with a Congential Heart Defect.

Tristin's Journey
Written by, his loving mommy.

I found out I was pregnant on July 10, 2007. We had trouble conceiving so this was such a surprise and a blessing. We were finally going to add to our family. We already had a 4yr old named Griffin. I had a lot more problems with this pregnancy, more nausea and more pain. I was assured that it was all normal. Every time I went to the Dr. everything turned out fine. I went for my 24 week ultrasound. The technician never said a word so we went in to the Dr.'s office thinking that everything was ok. That was when the Dr. informed us that our baby had a heart defect called Hypoplastic Left Heart Syndrome. We went into shock! We started asking questions because we had never heard about it before. The Dr. informed us that the heart did not develop like it should have, and the left side of the heart was very small. We left still in shock, and proceeded to call all family members to tell them that our baby was a boy and that he had a heart defect. When we arrived home, we looked up the diagnoses on the computer and found out that he would need to have open heart surgery when he was born and two other open heart surgeries by the time he was three years old. Talk about scary. This was supposed to be a happy day for us. Even harder, my husband had to go out of town that night for his job, so we both had to deal with this news on our own. Eight days later we went in to see a perinatalogist . We went in hoping that there had been some sort of mistake, that they just didn't see it right. Another ultrasound was done, this one more detailed. They showed us the heart and how the left side was smaller. They asked us how much we knew about hypoplastic left heart. Due to the fact that we had already researched it she didn't go into explaining it any more. By this time we were pretty upset and started to cry. This was too much for them to want to deal with so we were shoed out the back door. Our next step in this journey was to go to Children's Mercy hospital and have an echo done by a pediatric cardiologist. Then we had our third and definite diagnoses that he had hypoplastic left heart. We also met with the Cardiac surgeon that would do our baby's surgery when he was born. By this time, we had named our boy, Tristin. We were informed of everything that would happen when he was born and that it would be a series of hurdles. Then we were sent home to wait for Tristin to be born. At this time I went in search for a new OB. The one I had been seeing didn't work at a level 3 hospital. We felt for Tristin's best survival he needed to be delivered in a hospital with an experienced NICU, even though he would be transferred to Children's Mercy Hospital soon after he was born. We soon found a wonderful OB that worked at St. Luke's Hospital, which has a level 3 NICU. They were familiar with the diagnosis and I felt comfortable with their ability to care for him. We also got to meet with the NICU doctor that would be taking care of him. Now all we had to do was wait for the day we had scheduled for Tristin to be born. We chose March 10, 2008. He would share a birthday with his cousin, Ariel.

There wasn't much sleep to be had the night before Tristin was born. In addition to being extremely nervous, I was trying to get everything done before leaving our home for what we hoped would only be a month. We had to be at the hospital at 0600 to be prepped for surgery. So, we were up at 0400 to get ready and to take our 4yr old over to my mom's. He was so excited about having a new baby brother. We decided it would be best for him to be in daycare for the day. So, my mom would drop him off at daycare and then be at the hospital before I went into surgery at 0800.

Surgery started at about 8:20 am. I received a spinal block, so I was awake during the whole c-section. Tristin made a grand entrance into the world. He started crying the minute they pulled his head out. He just couldn't wait to let his voice be heard. I think that is was the single most beautiful sound I have ever heard. To me, it meant that he was coming out the fighter that he would soon prove that he was. I saw them take him over to the warmer and the first thing I noticed was that he had such a perfectly round little head. My other son was beautiful too, but something about that little bald head was just breathtaking. I immediately began to cry. How could anything be so perfectly beautiful? His color was pink, and he looked completely normal. If we didn't know any better we would have thought he was a perfectly healthy baby with a healthy heart. After getting him all wrapped up they brought my boy to me. I gave him a quick kiss before they took him to the NICU to stabilized him and get him ready so he could be transferred to Children's Mercy Hospital. They put in Prostin though his umbilical cord to keep the holes in his heart from closing until they can do his surgery. After I recovered from surgery they took me to the NICU to see Tristin. They wheeled me right in, hospital bed and all. They took pictures of us and I was able to touch my boy. I think I touched every part of him I could reach. I was nervous about being separated from him, but I planned to go out on a day pass every day until they discharged me. After about 20 minutes I blew Tristin a kiss and they wheeled my bed to my room. I would see him one more time before they transferred him to Children's Mercy. I told my husband I wanted him to follow the ambulance to Children's and stay with Tristin. I had a few friends that came and stayed with me that night to comfort me. They were a great help. I was constantly updated about Tristin by my husband. I was comforted by the fact that he was there with him. Day passes were great but short due to the amount of pain I was in. I was discharged the day before Tristin would go into surgery.

The night before surgery I spent time holding him and doing what ever I could for him. We met with the surgeon about what would happen when Tristin went to surgery. I had my first meltdown when he told us that do to Tristin having such a small aorta; there was only a 70% chance of him surviving surgery. We were told he had an 80-90% chance before. I was terrified.

We were up until 12am with him that night. I gave him his first bed bath and kissed him goodnight. I told the nurses that we would be up there again at 0600. The phone rang and I nearly had a heart attack. I tried to always prepare myself for the worst. The nurse said that he had been crying and wanted his mommy. It was such a good feeling to know that he needed me. The nursing staff also surprised us with some pictures they had taken of him. I held him a little bit before they came to take him to surgery. My mother brought my older son Griffin so that he could get a look at his little brother. After many kisses we said I love you to Tristin and they wheeled him into the surgery room. I was all nerves. But it helped me when we went into the waiting room to find all our family and many friends there waiting for us. We were so lucky to have so many people there to support us and root Tristin on.

The surgery lasted about 4-5 hrs. A nurse came to inform us of the progress every 1 › hrs. Every report we received was good news. Surgery went well and our little fighter came off bypass first try. Sometimes it takes a few tries. We were so relieved that our boy had made it through this most critical time. The surgeon informed us that recovery would be a series of hurdles. Tristin was amazingly stable throughout his recovery. The main problem he had was trying to get all the fluid off of his body so that he could have his chest closed. Within about 4-5 days he was able to have his chest closed. He did develop a chylorthorax so they had to keep his drains in a little bit longer and had to change from breast milk to a special formula. That allowed me to build up a better milk supply. Over all Tristin was doing so well that the doctors didn't even come in to see him that much anymore. When Tristin came out of surgery he had about 16 IV medicines attached to him. Slowly everything was removed little by little. His chylothorax cleared up and drains were removed. Staples to his chest incision were removed soon too. Our little man was doing so well. Some of the Dr.'s and residents nicknamed him the rockstar of the PICU.

After being extubated successfully, there was some concern that he might have some damage to his vocal cords. His cry was very weak and soft. They had GI come in to check him and they thought there might be some paralysis to his vocal cords. They had an OT come in to evaluate how he fed. Choking was in issue so they talked to us about putting in a G-Tube and a fundoplication to help with feedings and the fundo was supposed to help with acid reflux. I tried to convince them to send us home with the NG tube. I'm a nurse and have dealt with NG tubes before. I felt confident that I could handle it. Never the less, they kept pushing the issue and said that it would be in Tristin's best interest if we had the G-tube placed. We were told that many hypoplastic babies end up with G-tubes, and some hospitals place a G-tube before they even come out of heart surgery. Based on their information we agreed to the G-tube. Thinking back, we wish we had declined the G-tube. The morning after his surgery is when we almost lost him the first time. He came back from surgery the night before and had to stay intubated overnight. During the night he needed to be suctioned and the nurse and respiratory therapist suctioned him too deeply and his heart rate dropped down to the 80's. I was so terrified. I made sure to let the Dr. know when she came in. Then, at 10:30 that morning, I was standing next to Tristin when he began to cry. I tried every thing I could to calm him. I saw him bear down and that is when his heart rate dropped down from 130 to 80. I screamed for the nearest nurse and she came running. His heart rate came back up, but she tried to suction him and his heart rate dropped again. They began doing chest compressions and every thing else became a blur. I think I almost fainted many times. How could this happen, he was doing so well. Before I knew it there were several Dr.'s and nurses in his room. We were lucky to have his cardiac surgeon there to help with the code. The cardiac nurse was there to inform us of everything happening. There was one moment when they had him stabilized for 15 minutes and then he crashed again. The only option left was to put him on a machine called Ecmo. This was basically a heart lung bypass machine. A tube was placed into his neck and blood was circulated throughout his body and this machine and then oxygenated and sent back to his body. When they put him on the machine his heart was not doing much work, but over time his heart started to pick back up and start working again. During this time, we had several family members come to support us. This was the scariest moment of our lives up until that point. My husband slept in the room with Tristin that night and I tried to sleep in the Ronald McDonald room. After coming back to Tristin's room many times, my husband had to walk me back to the Ronald McDonald room and stay with me until I fell asleep. The sounds of the alarms that went on that day echoed through our heads. But, finally sleep came, and my husband went back to be with Tristin. The next day Tristin had an ultrasound of his head to check for any bleeding. This was standard protocol for children on Ecmo because their blood has to be thinned for the machine and they are at risk of bleeding out. On the second day of being on Ecmo the ultrasound showed that Tristin had had a stroke on the left side of his brain. The Dr.'s told us that it had occurred probably due to lack of oxygen to the brain when doing chest compressions. It was hard to believe that he'd had a stroke. He was still moving everything equally even though he was sedated. Later on that day the surgeon came in to speak with us. He told us that due to the fact that a stroke had occurred, Tristin would have to be taken off Ecmo soon because there was too much of a bleeding risk in the area of the stroke. He also stated that he felt confident that Tristin could come off Ecmo anyway because he was doing so well; his heart was working on its own. Monday morning Tristin came off of Ecmo after only 3days, and the first try. The next step was to get all the excess fluid off of his body so he could come off the ventilator. A week later they tried weaning him off but he just wasn't ready yet. He was on the ventilator another week and a half before finally coming off. That was such a relief. I finally got to hold my baby again. During all this time, Tristin was still moving his right side. No one could even tell that he'd had a stroke because he was still moving every thing equally.

Another week went by and it was time to leave the PICU and go upstairs to a regular floor. I was happy but extremely nervous. The plan was to go upstairs for about a week and then get to go home. The room upstairs was nice. It had its own shower in it and a breast pump available for me when I needed it. I was starting to get more comfortable there, but I was concerned about some acid reflux that he was having. I spoke to the doctors about it several times, but they never seemed too worried about it. I worried about it all the time. Something just didn't seem right. After a week upstairs it was decided that Tristin would go home the next day. I would take over his cares that night and he would go home tomorrow. He was fussy all day and then, that evening he began to cry so hard. I could not get him to calm down no matter what things I tried. I called for the nurse because I just didn't know what else to do. For some reason I took him and laid him down on his bed and uncovered him. He was completely mottled on his trunk and legs. I called for help again and the nurse came. She called for some help and paged the dr. We gave him some oxygen and slowly his color came back. He also had weak perfusion but that was also coming back. One of the residents from the PICU came up to evaluate him and thought that he just didn't look like himself. So for safety sake he would go back to the PICU. No going home tomorrow. I can't even begin to tell you how disappointing this was to not get to go home and end up right back in the PICU again. They did a chest x ray and tried to get in an IV. He had just had his picc line removed a few hours before this all happened. After he was there for a while I left him with my husband and his nurse and went upstairs to pump. When I got back they informed me that he had been crying and his heart rate dropped down low, but had managed to come back up on its own. I felt so guilty about leaving him. I felt that if I had been there maybe I could have calmed him down, but he seemed to be ok now. That night there was not much sleep to be had. Tristin was definitely upset about something. He cried all through the night and they had to give him a sedative to calm him. He was so tired all he had was just a faint continuous cry. I sat by his bed all night and just rubbed his head and held his hand.

The following morning his doctor came in to see him and told us that the x ray that was done had shown that he had NEC, which is necrotizing enter colitis. It is an infection caused by lack of oxygen to the intestines. Preemie babies get this sometimes due to lack of lung maturity and it can be fatal. GI came to consult on him to see if he would need to have surgery. They stated that it had been caught early and would just need to be on antibiotics for 2 weeks with out food. He would need TPN nutrition during that time. They also found that he had a possible coarctation of his aorta, and that he would have to have a heart catheter done after he recovered from his NEC. For now, he would have to have a picc line placed. His doctor was very fond of him and always took such great care of him. I guess he had her under his spell. It wasn't hard to do to look into those eyes and just fall in love. She went with him to have his picc line placed and made sure that he was comfortable. How thankful we were that she was on rounds that day. It made being back there a lot easier. He had his picc line placed without any problems.

Two weeks rolled by and no problems at that point. I was sitting holding Tristin on the last day of his antibiotics and all of a sudden his heart rate jumped up to 180bpm. It was very odd because he was relaxed and just laying there looking at me like he always did. I called for his nurse and we moved him to his bed. He didn't seem to have any other problems, but his heart rate stayed up for about 30 minutes. We just didn't have a reason for it. The next morning it happened again. This time we noticed that it was happening about 20 minutes after he finished his Flagyl antibiotic. Luckily that morning dose was the last dose of that antibiotic that he would need. His heart rate never jumped up that high again.

He had x rays every day for 2 weeks and all the x rays showed no more signs of NEC. It was now time to address the coarctation of his aorta. His heart cath was done and it was a coarctation. They had to use a balloon to widen that area; it was still a little too small so they had to go in again with another larger balloon. After the heart cath was done they took us into a room and showed us a video of what was done. It was interesting to see. The doctor told us that he would probably have to have another heart cath done before his next surgery. Tristin had to stay on the ventilator overnight to let his heart rest after the procedure. He was successfully extubated the next day. A week passed and he did really well. He had his first tub bath, in which he did really well but just passed out and slept for several hours. Two days later and he was going to be sent upstairs and possibly going home in a few days.

It was Monday, May 19, 2008. We were discharged from the PICU and sent back upstairs. I was very hopeful this time. I was anticipating bringing him in a few days. This is what I had been waiting for almost 2 › months. After Tristin was sent upstairs, his grandparents stayed with him while we went to a congenital heart defects support group meeting. We were excited to share the news that he was out of the ICU and back on a normal floor again. The meeting went well and we went back to the room. When we got back Tristin was sleeping and his grandparents said that he did really well. He had been awake for a while and then fallen back to sleep. It wasn't long after we were back that Tristin's oxygen sat's began to drop down into the fifties. I began to get nervous, we gave him some oxygen and his sat's came back up but dropped down again after we removed the oxygen. Finally his sat's returned to normal and I asked the nurse to call and speak to the doctor about it and see if he wanted to put him on a low amount of oxygen for a while to be safe. She sent a page to the doctor and we never heard back. I changed the sat probe to a different finger and then it was reading normal. About an hour later I tried to go to sleep but his oxygen sat's were now reading too high. I got up and moved his sat probe to his toe. This woke him up. It was about 30 minutes before his feeds and he was hungry. He was always getting hungry about 30 minutes before his feedings were about to start. He was so mad. I tried to calm him down but nothing was working. The nurse came in when she heard him crying. Suddenly he bared down and his heart rate dropped down. I freaked out and laid him down onto the bed. His heart rate dropped down again even lower. The nurse acted like she didn't know what to do. I was really freaking out now. Some more nurses came in to help and asked her if she wanted to call the code. She said that she wanted to wait. My husband was trying to console me. His heart rate kept dropping and they finally called the code and began chest compressions. The doctors and staff came up from the PICU and began to work on him. I'm not sure how much time had passed, but he came back. He was crying, and a very strong cry at that. I started to relax a little, but still remained nervous. The PICU doctor said that they were sending him back down to the PICU and we should follow them. He cried all the way back down there. She stated that it was a good sign that he came back crying. They did a blood gas and it came back abnormal. They wanted to put him back on the ventilator to him his heart a rest. The minute that she placed the tube in his throat, she stimulated that vaegel nerve again and his heart rate plummeted down to 30bpm. At that moment I knew that our dear sweet boy was gone. I just knew it! They did chest compressions and his heart went into v-tach. They shocked his heart but had no luck. Continuing with the chest compressions they called us in to be with him. I looked at him and asked them if he was gone. They said yes and stopped chest compressions. On May 20, 2008 at 1250am Tristin went to heaven where he will be there waiting for us someday. My husband and I were completely devastated. Our boy was gone. We stayed there with him until the early morning. All of our family came, and all had a turn holding him. One of his nurses came in to see him. We declined an autopsy because we felt we knew what his cause of death was. We feel that it was due to vaegaling when he was crying and his heart defect just couldn't compensate for it. He had enough things done to him, and we felt that there should be nothing more done to his sweet little body.

We had great support throughout this time, and our time in the hospital. If I had to do it all over again I wouldn't change a thing, except push for a pacemaker. His heart rate had come down enough times that I feel a pacemaker could have saved his heart rate from going down too low. I know that I can't dwell on the things that I cannot change. I was glad to be able to be there with him every day of his life. He has forever changed my life and that of our family.

My Tristin was such an amazing baby. He, like my other child, was very expressive. He would look at you in a way that you could almost tell what he was thinking. And, at just 2 › months he was already smiling. He had the most beautiful smile. He also would furrow his brow when he was looking at you like he was just trying to figure you out. He touched many lives while he was on this earth. Later, we found out that on the day he left us, he actually changed the atmosphere of the PICU. There was sadness that hung over the staff that day and many tears were shed for our boy. It has amazed us how many people loved our son. He will forever be missed by all. He was the PICU's little rockstar, and that was what they called him.

"Good night little rockstar, your heart is now perfect!"

Tristin Riley Fairbanks
March 10,2008- May 20,2008

 #176683  by Shadowvox6
I am deeply sorry for your loss.
I can't imagine what I would feel in your place.

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 #176687  by velobard
So sorry to read this. It would be so hard to endure all of the ups and downs, only to have this sort of ending. I wish you all the best.

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 #176688  by SlydinClyde
Thanks for your thoughts, this has been a true test of our faith to say the least.

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 #176739  by mnitetrain
I feel for you but I just can't find the words.

God bless your family and Tristian.

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 #176770  by 300maximilien
Thank you for sharing your childs story with us.

I am not so sure I would be so strong.

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 #176782  by SlydinClyde
It is amazing the strength one finds in there religion when needed.
Thanks for the comments.

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 #177634  by Carfan77
Wow. My heart hurts, and I'm crying. My Prayers are with you and your family.

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 #177651  by FIREM
Thoughts and prayers for all, truely a test of faith.
Just think of the Christmas he is having, that we have to wait for......

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 #185945  by 300maximilien
Bump....This Post makes me appreciate what I have and the health of my Family..