Kasey's Story

I had Kasey's name written on a flower and say it with flowers requested our stories, so here it goes...It all started when I was 19 weeks pregnant. We went for our 20 week ultra sound and by the way the tech was acting we knew something was wrong. A few days later I received a phone call from a genetic counselor, they had found things in the ultra sound that made them worry, I don’t think that she went into details on the phone with, because I didn’t hear anything she said, my heart sank. I was so sacred, but thought in the back of my mind it could be a mistake our baby would be ok. We met with the counselor and a Perinatologist. Genetically there was nothing that should make us worry, during the ultra sound the Perinatologist found a space that was between the heart and the lung on the left side. He suggested that we have an amnio done to rule out infection, downs, and chromosome problems. I had to call my work and tell them that I wasn’t coming back to work that day. I could barely talk I was crying so hard. We weren’t supposed to go through this; we were supposed to be happy. After going to lunch Kevin and I decided to have the amnio done we went back to the Perinatlolgist, he gooped up my belly and stuck a long needle in my belly while watching on the ultra sound. I laid frozen on the bed scared to death refusing to look at what he is doing. After two long grueling weeks we got the results back with happy news, no chromosome problems. I continued to grow at a fast pace, I went to my OB for a routine checkup. I was measuring full term and I was only 23 some odd weeks, every time I went to the doctors I got more bad news, the next day I went to see the Perinatologist again and he took another look at Kasey. His head and mid section were measuring about 3 weeks ahead still and his legs were right on schedule. His kidneys were a bit on the large side and he has a mass in his chest cavity. The Perinatologist was thinking maybe he had a tumor. He had also thought maybe that he had a syndrome called Beckwith Wiedemann. Some of these things attribute to this syndrome. This was a speculation and I think he was trying to find a reason why all of this was going on. Furious, confused, scared, I asked for a second opinion and the 2 colleagues of the Perinatologist both agreed that Kasey had Beckwith Wiedemann. I wasn’t happy with the opinions and wanted someone else to look at the ultra sounds, but he said that he had the best look at them already. Two weeks later which was Veteran’s day I went to the Perinatologist again, I was extremely uncomfortable, my skin felt like it was going to split, I itched terrible. I would scratch and leave bright red marks and bleed. I had not been able to sleep in a month, Kevin went and got me a recliner in hopes that it would help relieve some of my pain and help me sleep. I had also been having sharp pains in my lower back and rib cage I was going into labor-Kasey was getting ready to make his grand entrance. Although my OB said that my rib cage was just expanding. The Perinatologist was going to take 3-4 lbs of fluid to help me get more comfortable. After doing an ultra sound he determined that I was 1 cm dilated and decided that taking fluid out wasn’t going to help, as it could accumulate as soon as it was gone. He told me to go to the ER, I knew there was no hurry so we waited until about 9 PM to go, they monitored me for 2 hours and sent me home, they wanted my body to prove that it was ready. I could tell through the week that I wasn’t going to make it much longer, Kasey was dropping. Sunday November 16 my water broke about 7AM. We showered and got ready to go to the hospital. My water was rapidly leaving me, I soaked trough several towels. We got to the hospital around 10AM, I was 5 cm dilated. We were in “lucky room 7”. We watched the Bronco game, I think they won? The neonatologist on call came in and said he wanted me to deliver in the OR so there was enough room for everyone. No one knew what to expect. After the game they decided to move this process along so they started me on pictocin, as soon as it hit my veins I felt the contractions. Up until this point I was in no pain; now that is my kind of labor! About 2 hours later (an hour too late as Kevin didn’t tell the nurse that I needed to push). When she finally came back in, he told her; she thought otherwise. When she checked me she started to panic, as she didn’t know if I was supposed to push in the birthing room or in the OR. Her wise words of advice were, “Don’t push.”I was rolled into bright well lit OR; I pushed for 45 minutes- 30 minutes longer that it should have been-I was pushing wrong, who knew? The wait was finally over and Kasey was here! Against my birth plan, they quickly took him. I remember him trying to cry. I didn’t know what was going on; Kevin stayed with Kasey and I was wheeled back to the birthing room. They quickly found out that Kasey had a diaphragmatic hernia. A diaphragmatic hernia is a birth defect, which is an abnormality that occurs before birth as a fetus is forming in the mother's uterus. An opening is present in the diaphragm (the muscle that separates the chest cavity from the abdominal cavity). With this type of birth defect, some of the organs that are normally found in the abdomen move up into the chest cavity through this abnormal opening. After getting cleaned up and finally getting to eat something, I went and saw Kasey; no one could have prepared me. My little punkin was hooked to a loud machine; he had a tube down his throat and stickers on his body. All I could do was cry. Later on I tried my hardest not to cry around him, I didn’t want him to know how sad I was. He was hooked up to a computer that had lots of zig zags. All of this was so overwhelming! I later came to know the lul of the machine (oscillator) and depend on the computer to tell me how Kasey was doing. The neonatologist was very confident; they would go in, push the organs, sew him up, and he’d be as good as new. A surgeon from Children’s Hospital came over and repaired the hole on Tuesday; all went well. All we had to do was get Kasey’s lung to expand; we would be on our way home! Kasey was on an oscillator to help his lung grow. They also had to sedate him because he was trying to fight the ventilator. Kasey was a fighter; you could definitely tell that he was his father’s son! Shortly after the surgery Kasey started to retain fluid in his third space (his tissue). His lungs were doing well and he was being weaned off the oscillator, nitric oxide, and oxygen. The battle to get the fluid out of his tissue was becoming more and more serious. There were days when Kasey would gain a pound. The neonatologists tried several things, to no avail. Blood transfusion, plasma, octriotide, albumin, and lasic to name a few. I never thought Kasey wouldn’t come home. The Sunday before he passed away the doctors sat us down and told us we needed to think about what we wanted to do. We also needed to decide if we wanted to have a DNR. I was furious; how could you give up on my fighter? All he had done was fight. “Your job is to help him get through this,” I thought. It was living a nightmare. How could my baby not come home with me?!? Kasey hadn’t urinated that day either, this was a concern for the doctors, they thought maybe his kidneys were failing, which meant his heart would be next. He had a catheter in for over a week. The nurse decided to take it out, and Kasey pissed all over that doctors theory!! I told you he was a fighter! Kasey had daily x-rays and this particular day they saw fluid in his chest-again. They had previously put in chest tubes to drain the fluid. This was obviously only a temporary fix. Due to his edema (swelling) the tubes were not staying in place; they were being pushed out. The phone rang one night while Kevin was at Home Depot getting some things to repair a broken pipe; I hesitated to answer in fear that it was “the cal”. The call was bad news too. It was the neonatologist on call, and she said that fluid was pushing on his lung which was pushing on his heart. Something needed to be done quickly. Initially we decided to have the chest tube put back in. After thinking about it, I told Kevin I couldn’t bear the thought of Kasey being cut again. We hurried to the hospital and they hadn’t put in the chest tube yet, we told the doctor that we didn’t want to put Kasey through anymore; there was no solution. The doctor on call that night asked if we had held Kasey (we each had gotten to hold him once before). We drug a recliner into Kasey’s room and we held him all night. We took turns morning and night every day that week. We had him baptized that night, and the priest said “he looks fine; the doctors can fix him can’t they?” I know doctors are only people; this is an example of how much faith people put in doctors. Unfortunately they can’t make everyone better. We would tell Kasey daily that it was ok if he left; we also told him frequently that we loved him and how proud of him we were. We wanted him to not be in pain anymore. Every day before I left Kasey’s bedside, I would read him Guess How Much I Love you. I wanted him to know that his mommy and daddy “loved him from the moon and back!” Kasey loved to be read to; I read him book after book and his stats would often improve when he would hear me. This was all I could do to help him get better! A family friend had been asking if they could meet Kasey and we really didn’t want anyone but family around since he was so unstable, but since we knew he wasn’t going to make it we invited them to meet Kasey. They came down and spent a few hours with us at the hospital. The next day, our neighbors come to the hospital to meet Kasey. That night we were on our way to the hospital and my cell phone rang, it was the hospitals number. I handed the phone to Kevin; I knew exactly what the call was about. They told us to come to the hospital that Kasey wasn’t going to last much longer. All I could do was cry hysterically; Kevin reminded me that he was in a better place and not in pain anymore. Seconds later Kasey passed away. Kasey had accomplished what he needed to while he was here. Kevin called my mom and brother to tell them to hurry to the hospital. Kevin dropped me off and I ran to the NICU; they were waiting at the security doors for me. As I ran past the nurses all I remember hearing was, “I am sorry”. I ran back to his room; the nurse who was on call that day was holding him. She handed him to me and I held Kasey with nothing attached to him and no noises in the room; he looked at peace, finally. We took turns holding him. I bathed him and we got a lock of hair- he had tons, foot prints and hand prints. Almost every one of his nurses came in to say their good buys. Kevin packed up everything that made that room Kasey’s for the past 33 days. We went home that night. It was a weird feeling; I wasn’t worried anymore. I wouldn’t have to watch all these women take their babies home. I began to hate them more and more every time we went to the hospital; they had that look on their face, the joy on their faces, the lifetime of joy that I was robbed of. The next day we packed up everything that was anxiously awaiting Kasey’s arrival.