Evans, Shelton Earl

[left:58e1cf641f]http://www.cherubs-cdh.org/Album/new/evans-shelton.jpg[/left:58e1cf641f]Five years ago, God blessed me with an angel. This is his story!

My husband, Shane, and I wanted our children to be 2 years apart. So, after the birth of our first son, Peyton, we waited one year and started trying to conceive. Much to our surprise, I was pregnant within 2 months. I had a very uneventful pregnancy and we assumed that we would have another beautiful, healthy child. We had an ultrasound and found out that we were having another boy. So, we started planning for Peyton's little brother's arrival. Then in my 31st week of pregnancy, I went into premature labor. I really wasn't too concerned. My doctor seemed more concerned than I was. The third day I was in the hospital, I was using the good old bed pan and I lost my mucus plug. It was then that I realized how serious this was. I didn't really feel like I was in labor. It's a wonder what drugs can do! However, I had dialated to 3 1/2 cm. I was in the hospital for a week and we finally got the contractions stopped. I was sent home on medication and bed rest. My step-mom came to help out with Peyton. Shane works out of state putting in natural gas pipelines. So, I was in desperate need of help. Things clicked along fine and we scheduled my baby shower for September 16, 1995. I went to see my Dr. on the 15th. He said that he thought I'd have to have my shower at the hospital. I said, "Yeah, right!" We took Peyton to McDonald's and when I went to the restroom, I started spotting. We went to tell my sister so that she could come stay the night with me "in case". We stayed up until 2am waiting. Nothing happened. I woke up at 5am to go to the restroom and my water broke. I immediately called Shane and we headed for the hospital. The pain was much worse than with Peyton. I literally thought I was going to die. I remember my nurse making a comment about how much the baby had hiccups when I was in labor. I asked her why unborn babies got hiccups. I had always thought that it was an air bubble in your diaphragm and they don't breathe air. She said that it's not necessarily air, it's just a disruption in your diaphragm. I told her that he had hiccups more than he didn't. He had them 11 times just while I was in labor! At 2:19pm, after much screaming, Shelton Earl Evans was born into this world, weighing 5 lbs. 12 oz. and 18 3/4 in. long. Needless to say, I didn't make my shower. I was in too much pain to notice that he wasn't crying. His nurse gave him a shot to "wake" him up. They thought he might be reacting to the Stadol I had during labor. It didn't work. After what seemed like hours, they began CPR on him. The nurses asked everyone to leave the room. After a few minutes of this, they wheeled him out of the room to the nursery. I really didn't know what was going on. Awhile later, my nurse came into the room crying. She told me that I had a very sick little boy. Then, my Dr. came in to explain to me that they had done a chest x-ray on Shelton and found that he had a condition called Congenital Diaphragmatic Hernia. This is a hole in the diaphragm. During pregnancy, vital organs and intestines slip up through the hole into the chest cavity and this prevents the baby's lungs from developing. He said that they needed to transfer him to Seton Hospital in Austin so that he could have surgery immediately. While he was explaining this, Shane arrived. I'll never forget the look on his face. He thought I had, had the baby but he didn't see him anywhere and I didn't look pregnant anymore. He looked around very confused. Then we explained to him the situation. They let us go in and see Shelton for a couple of minutes before they transferred him. (This was the only time I saw him with his eyes open and for the life of me, I can't remember it.) When we arrived at Seton, the surgeon came out to explain the surgery to us. They would make an incision and put everything back in it's place. They were hoping the hole would small enough to stitch closed, but if it wasn't they would have to use a synthetic patch to close it. He was in surgery for 5 hours. The surgery went well. His intestines and his liver were inside the chest cavity. Needless to say, they had to use a gortex patch to close the hole. When we went in to see him, I couldn't believe my eyes. He had tubes and needles covering every inch of his tiny body. I could only touch his head or his foot. Sometimes when I would go in to see him I would be rubbing his tiny feet and the alarms would start going off. They would tell me not to stimulate him too much. What a strange word for love. I wanted to rip all of those needles and tubes off of him, but instead I had to settle for rubbing his foot, and now I am told that this was too much. Shelton's stability rose and fell through the night. That was the longest night of my life! Shane told me that I needed to prepare myself in case he didn't survive. I told him to "stuff it", he was going to be just fine. Don't you love denial? Shane wouldn't go in to see him anymore. He was preparing himself for the worst. Shelton continued to deteriorate. His Dr. called the Santa Rosa Children's in San Antonio and consulted with the head neonatologist. They have a treatment there called ECMO. (Extra Corpeal Membrane Oxygenation) This machine would oxygenate his blood for him to take the strain off of his lungs and allow them to mature. In order to transfer him there, we had to make sure that he was strong enough to make the move. They performed an ECG and an EEG. His EEG came out fine. No brain damage. But, they thought they saw a problem on his ECG. They called in a specialist to confirm. The specialist arrived around 3am. We went in with Shelton while he performed a more advanced ECG. The Dr. showed no emotion through the procedure. When he was done, he explained to us that the right side of Shelton's heart looked fine. However, on the left side he detected a closure in his aorta. This is called Coarctation of the Aorta. While he was going through the medical jargon of this condition, I was staring at my beautiful son. We were in a different world. Just me and him, as it should be. I felt tears begin to stream down my face. Reality was setting in! How could this be? This was not real! This was a nightmare and any minute I would wake up. We returned to the waiting room while the two Dr.'s talked about our options. The neonatologist called Santa Rosa and explained the situation. The head Dr. there said that a baby born with CDH and any associated heart defect had a 100% mortality rate! I will never forget those words. He then told Shane and I our options. We could leave him on the ventilator and he might survive 3 days or we could take him off and let him go. I asked him, "either way, would we be delaying the inevitable?" He said, "yes!". So, we made the hardest decision of our lives. We chose to take him off of the vent. His Dr. asked us if we wanted to be there when he was removed. He said that if it were him, he came into this world with his parents and he would want to leave it with his parents. Shane said that he did not want to be there. I said that I wanted to. I could not pass up the first and last chance to hold my son. They brought in a rocking chair, with a pillow to sit on, in for me and they put up privacy screens up around us. My mom, my sister, my mother-in-law, my sister-in-law and me were there. I sat in the chair and they quickly unhooked him and placed him in my lap. He had been heavily sedated after surgery. There was no movement, no last breath. The nurse checked his vitals to determine a time of death and asked me if we wanted an autopsy done. She said that if we did that they would have to leave the tubes in. I don't know why that is, but I said, "no". I wanted all of the needles and tubes off of him right now. It was very silent and peaceful. I immediately brought him to my face. I wanted to take in every inch of him. I was transported to another place. A place where I had a beautiful, healthy son, a place where I took him home the next day and showed him his room, fed him, bathed him, loved him. A place where babies don't die! I unwrapped him from his blanket. I looked at every inch. I counted his fingers and toes. They were all there. They were all perfect. How could he look so perfect and have so much wrong on the inside? He was beautiful. His hair was brown like his Daddy's and it felt like silk. He had my nose which I got from my mom. He had my feet and toes. He looked like his Daddy when he was a baby. Everyone took turns holding him. I asked them to find Shane and send him in, but they couldn't. He was doing laps around the hospital. I did learn later that he stood at the NICU door and watched me holding him through the glass. After everyone was done I held him for a few more minutes. I stood up, and handed him to the nurse. She said that she'd clean him up for us. I turned and walked out without looking back. This haunts me to this day. I never turned to get one more look, see where she took him or kiss him one last time. I think I thought, in my mind, that if I turned around I would grab him and run and never look back. We left the hospital with an empty, hopelessness. It was as if he were still at the hospital and we just had to go pick him up later. We went straight to the funeral home to make the arrangements. I did OK until they brought in a casket to show us. I lost it! I will never forget the look on that man's face. He felt awful. He just turned around and took it right back out. There was no way that my baby was going in that box to be put into the ground. This was inconceivable. Shane was anxious to get home to Peyton. So, we went home and slept. That first night was terrible. I couldn't sleep. I would lay there staring at his cradle with all of his stuff in it, waiting for him. We had everything but the baby! I finally woke Shane up and told him to take it out of our room and put it in his room. The next day I went "shopping" for the perfect outfit and Shane went "shopping" for the perfect burial plot. I picked out the cutest outfit. It was blue and white and had 'Thank Heaven For Little Boys' on it. I got a preemie size so it would fit him. I was so used to buying for Peyton that I immediately picked up the bigger size. Then I realized that he didn't need growing room. The lady at the counter went on and on about how cute and small it was. I wonder what she would've said if she knew that it was to bury my baby in. My sister and I took the outfit to the funeral home. I wanted to see him, but he said that they weren't "done" with him yet. He said that I really needed to get a bonnet for him because he had a bad spot where they tried to put an IV in his head. I told him that we had all seen it and I didn't care. He looked perfect to me. We went back later to see him. Me and Shane went in first. Shane finally broke down. This was too much to bare. The next day we went to the funeral home before the funeral. They told me that it was time to go and I couldn't leave. I laid my head on Shelton's chest and cried out to God. I knew that this would be the last time I would see or touch him. I guess it's a good thing that they pulled me away because I would still be there today. The funeral and the days that followed were a complete blur. A week later I met my sister in town to have my niece's pictures taken and to take back some of the baby things that I hadn't opened. I went and looked at all of the baby stuff and when I went to the photo place there was a woman with a newborn baby. I just stood there staring at him. I wanted to take him and run. Just to hold and touch a baby seemed like Heaven. I realized that I was standing there crying and I hoped that woman had not seen me because she would've thought that I was crazy. Maybe I was. My sister was going to come to my house but she had a couple of stops to make first. I went straight to the cemetery. I guess she knew the shape I was in because she came there, too. When she got there I was laying on his grave bawling. I had my hands dug into the fresh dirt and ants were crawling all over me. As she sat there rubbing my back, I realized that this was too much to handle. I stopped crying, stood up and went back to my car. A few weeks later I got a job and kept myself busy. I did really good, too. I could talk about it with no problem. It happened to someone else- not me. I joined a support group at the Ronald McDonald House. All of these parents were so emotional and depressed. I started to feel guilty because I didn't feel like this. Did that mean that I didn't love Shelton as much as they loved their's? Two months later I found out that I was pregnant again. We had been trying. I said the day of Shelton's funeral that I wanted another one. Everyone told me, "you don't know what your doing! you need to wait." I told them that I wanted a baby when Shelton died and just because he died, that didn't mean I didn't still want one. I was so happy. I just knew it was going to be another boy. I had even contemplated naming him Shelton because I loved that name so much. We had our 1st ultrasound with a specialist and they told me that it was a girl. I started crying. I wanted a boy! Then it dawned on me what I was doing. I was unconsciously trying to replace him. I wanted to do it over and pretend that it never happened. After I told my boss that I was pregnant, she fired me. She didn't say that, that was the reason, but I know it was. I was the bookkeeper and she depended on me. I guess she thought that I couldn't do that being pregnant. Depression began to seep in. I didn't have anything to keep me busy anymore. I couldn't run anymore. I didn't want to get out of bed. I didn't eat. I didn't even want to take care of Peyton. He ate hot dogs or cheese, anything he could get himself. I slipped deeper and deeper each day. I wanted to die. I would pray to God everyday not to let me wake up. I didn't care about anything. I just wanted my son back. I would sit for hours holding his clothes, smelling them, trying to go back in time. Shane would come in and get mad because I didn't do anything around the house. He told me that he was going to admit me somewhere if I didn't snap out of it. I had a family to take care of. He didn't like to see me upset because that made him think about it and he didn't want to. He was still running. I finally hit bottom one day and called a therapist. I didn't know what else to do. I felt like I was going crazy. I couldn't control my emotions, I didn't care about anything and I cried continuously. After many weeks of therapy and the support of the Ronald McDonald House, I slowly came out of the depression and started to focus on my pregnancy. I was having problems. I had already started having contractions in my 5th month. I was, again, put on medication and semi-bed rest. July 31, 1996, 5 1/2 weeks early, Lacey Denise Evans was born weighing 5 lbs. 6 oz. She had some problems due to prematurity and she had to stay in the hospital a couple of weeks. We were so scared. The minute she was born, I said over and over, "please make her cry, please make her cry." I just knew that she was going to die. But, she did cry! She had to stay on a heart and breathing monitor for 6 months because she had apnea, but today she is a spoiled rotten, healthy 4 year old! It took me 3 1/2 years to go through the grieving stages and come to acceptance. It took Shane a little longer than that, but he has made it. It was alot of hard work and sometimes it seemed like I was going backwards. It was two steps forward, one step back! I still have bad days every now and then, but they are not as bad as they used to be. I thought that after so much time I would be OVER it by now. I now know that you NEVER get over it! You only learn how to live WITH it. You will never HEAL and it will never go away, you only learn to look at it from a different point of view. I am truly thankful for Shelton being born AND him dying. He taught me more in that short time than most people learn in their entire life. I wondered one day how someone knows if they have reached acceptance. I asked myself... if I could go back to that day and snap my fingers and Shelton would've lived, would I? The answer was "NO"! I later asked Shane the same question and he replied the same. I would still be taking life for granted, I would still be afraid of death, I would not know the true meaning of life and love and most importantly, I would not have the glorious, personal relationship with God that I have now. I wouldn't trade that for anything in the world! I no longer have the sense of loss. I know and feel that Shelton is with me everyday. He is not gone! He lives within ME! I had a video made of Shelton with the song 'The Dance' by Garth Brooks on it. 'I could've missed the pain but then I would've had to miss the dance'. And what a painfully beautiful dance it was!!!


Written by Shelton's mom, Shelly Evans (Texas)
2000