Saving Little Hearts

Hi, my name is Joley Love Guin. I was born on February 7, 2005 at 2:38pm. I was four weeks early to my parents surprise. My mommy was in labor for 14 hours. She was very excited that she was pregnant. For many years doctors told her she may not be able to have children because of her endometriosis. Her and daddy never gave up praying. They were both surprised at my coming into the world, yet very ecstatic. My name originated from mommy and daddy's middle names. Mommy's is Jo and daddy's is Ashley.

My mommy took good care of herself while I was in her tummy. She did not want anything to hurt me. While growing she would never know the major problem that was going on with my little heart. I felt so warm and comfortable while mommy and daddy would rub me. I miss that.

It was a long night for mommy and daddy as I was approaching my first view of the world. Mommy held strong and I did my part. Finally the time had come when I would be able to see my special parents for the first time. Daddy was cheering mommy on for doing a great job. Both my grandma's were crying when I first met them. I knew then they loved me more than anything. The doctor sat me on mommy's tummy while they cleaned me off. After weighing and measuring me the nurse wrapped me in a blanket and I finally got to rest in my mommy's arms. I was born at 5lbs, 3oz and 18.5in. I sound small, but stronger than what most people would see at this point. Now I am being delivered to the baby room for more things to be done with me. While I was away they took mommy to another room to rest. A couple of hours had hone by and mommy, daddy and I could finally enjoy each other by ourselves as a family. At about 9:00pm that night mom and dad wanted to get some sleep so they had the nurse place me in with the other babies for a while. We all needed some sleep. Every couple of hours the nurse would bring me back and forth from mommy's room so that I could feed. It was hard for me to learn, but I would figure it out. Mommy and the nurse would help me out. I loved those times being close to mommy made me feel comfortable.

The next day my first full day was nice being with mommy and daddy. I got to meet a lot of my new family and friends. I never even cried. I loved people touching and holding me. Today I got more newborn tests done being that it was my first day in this new big world. The pediatrician kept checking on me with all the tests that they had to do. Two days later the doctor wanted to do extra tests on me because when the pediatrician listened to my heart it did not sound normal. I had to go to my first echocardiogram test that afternoon. Mommy was a little worried but figured it was just a precaution. Daddy went home to get the house ready for mommy and I to come home. As daddy went to brag to his friends about me, he would get a frantic call from mommy. She told him to come to the hospital because they may have discovered something wrong with my heart. The first doctor could not tell them for sure because she was not a specialist, but she called for one to come right over. One of my, many to come, heart doctors broke the news to my mommy and daddy that I had a broken heart. He told them that my heart developed incorrectly while I was growing in mommy's tummy. I had something called truncus arteriosus. To me this was some big name for my heart.

The hospital let mommy and daddy stay with me all night. I was immediately hooked up to many machines to read my heart sound. Tonight we would not be bothered by nurses unless my machines would go off. This was one of the best nights of all, daddy held me for hours while we watched the basketball game. I loved being on daddy's chest, he felt so strong and able to protect me. A while later mommy held me the rest of the night on her chest. All through the night they took care of me, feeding and changing me.

Days have gone by after I had been delivered and it is now one of my many big days. Today I was being transported to UNC Children's hospital in Chapel Hill. While mommy and daddy went home to pack clothes to live closer to me, my grandma's took care of me. Grandma Mason and Granny Guin feed me more than I had for days. I know they were trying to put weight on me and I was feeling it. My first time traveling was in an ambulance. That seemed weird to me because I wanted my first ride to be in mommy and dad's special car for me. But that would not be possible this trip. I arrived at the hospital and they would set me up in my own room, in the PICU. I was immediately hooked up to there new machines and big monitors. Now I had this warm heat lamp over me so I wasn't in a blanket anymore. When mommy, daddy, and my grandparents showed up they were nervous and scared to pick me up because of all my cords. I was content and my family needed to get some sleep. I was tired also from the long days I had already been through. The nurses waited on me all night. They watched over me and feed me on schedule. I would later be moved to the fifth floor (NICU) because I was stable and the doctors wanted me to put on weight. By the time I got to UNC I lost some weight and was down to 4lbs, 14oz.

I am now five days old and have been placed in many different cribs since I have arrived. Mommy and daddy arrived early this morning. Mommy is still recovering from delivery and daddy is helping her hold strong. She pumps me milk and the nurse puts it in my feeding tube. I am not able to feed off of mommy because my oxygen level goes down and I burn too many calories. I love that mommy helps me out with her milk though. As the day goes by I had a lot of visitors. All my grandparents come to see me daily. I feel comfort that everyone wants to see me and hold me. Today I saw some of mommy and daddy's friends and other family members. They are all really nice and I thank them for the wonderful gifts. The family has helped mom and dad being strong and bringing food.

A week has gone by since I have been on the fifth floor and now the morning has come for my big day. Daddy woke up with me at 4:00am. We talked for a little while and then mommy got up soon after. She bathed me, changed me and we snuggled all morning. Pastor Dave came to see and pray with me and my family before surgery. Mommy and daddy were more nervous than I was. They all walked me down to be prepped for surgery and prayed again. I knew whatever happened I would be alright. It felt like minutes for me while I was in surgery, but for mommy and daddy it was an all day nerve wrecking event. I went into the surgery room at 7:00am and the doctor talked to mommy and daddy when it was over at around 6:00pm. I was trying to fight hard after all of this but later that night my blood pressure and vitals would not correct themselves. Mommy and daddy talked to the doctor about putting me on the ECMO machine and that it would save my life. I was the first infant at this hospital to be placed on this life saving machine. It was a long night for mommy and daddy. They were able to stay close to me with a room next to the PICU. The next day was hard for mommy to see me all swollen and hooked up to many more machines than before. I had tubs as and wires coming out of all parts of my body. Since I got on the ECMO machine I was doing better. The doctors said the first 24hours would be critical. I was stable and working hard to get some of these machines off me.

It now has been a long four days, but I have got off my pace maker taken off and they have been slowing down on my medicines. My doctors say that today is an important day for me. I am able to get taken off the ECMO machine. They say if there is any time to do it, today would be the day. Once again the next 24hours are going to be rough on mommy and daddy. I have been doing well and breathing some on my own. Specialists constantly come into my room to scan my head, and everything always looks to be in good condition. This is a precaution because of the medicines and the machines I am on. Mommy and daddy are so proud of me. They tell me everyday and tell me how much they love me. Grandma Mason sings to me and Granny Guin holds my head and soft hair. Both my grandpa's get weak seeing me like this and feel the pain of not only their first grand daughter, but their own children. I love my family, they have been here every day for me.

Each day that goes by mommy and daddy are waiting to know that I will be moved back up to the fifth floor. It would make them feel better because than they would know I was stable enough to be on my own. The doctors said I am a miracle baby because of how well I came off the ECMO machine. Days have gone by and I am still on a lot of support (machines and medicine). I have been told that I have many people praying for me. Mommy and daddy's pastors have been visiting me. Pastor Ray spoke of me at church one Sunday. I am very thankful for all the people that love me and are praying for me.

Today is March 2, 2005 and I have not been feeling well. My head swelling has not been going down and they say I probably have a clot in one of my administration areas in my neck. That day Dr. Mill, my surgeon, comes into check on me again. He decides to bring the OR to my room because I am too sick to go there. He told mommy and daddy that this would be easier because my chest is still open from my first surgery. He said that he would go into remove the clot and place a dialysis tube inside me to help remove fluid from my body. My chest had been open long enough and I needed to get fluid off to close me up.

It would once again be a long wait for mom and dad while the doctor worked on me. They started at 3:00pm and said they would remove the clot, help pull fluids off of me and clean me up inside. My parents, grandparents and church friends wait to hear from the doctor. A few hours after they started working on me they discovered a problem with my intestine. They found a perforation and bowel was spilling around my stomach area. A neocrotize enterocolitis specialist talked to my parents about fixing that problem when the cardiologist doctor was finished with his work. My mommy felt my passing before daddy. His hope was still high, but I knew that I could not fight anymore. It took nine hours for both of my last surgeries. The doctors spoke to mommy and daddy while telling them everything went well. Until they came back to see me they could not realize how sick I really was.

Mommy and daddy were the first to come see me. While mommy knew they both cried over me. I never wanted to make them sad. While they stood over me the doctor explained there would be no chance of survival. My DiGeorge caused immune deficiency which did not help infection from my intestines. But that they should not make a decision right then. Mommy and daddy wanted my grandparents to visit me first. A few hours later mommy and daddy knew it was time for me to be with the good Lord up above. The nurse got them a rocking chair to hold me in. Mommy was first as I was laid in her arms. She could see my heart beating through the clear plastic over my chest. While in her arms she broke down as the nurse unhooked my support. It was only a few minutes until she passed me to daddy. I did not feel as I did the last time they held me. Daddy rocked with me hardly able to breath. As I took my last few deep breaths my two loving parents held me as they did when I was born.

I love you mommy and daddy. Thank you for being so strong for me. As you were proud of me, I am proud of you. I am with my other Father now. He is taking good care of me and so are the other people that are part of my family. There are other children here. Some that had similar problems as mine and others for different reasons. It is beautiful here and I do not want you both to worry about me. I am watching over you now. I love you both, even though I could not speak, I know you felt as I did. I love you and know you both love me.

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