StephanieMurray

Originally Posted by StephanieMurray

Hello.
I am Stephanie, mother of Kyler who was born with a left CDH in September. I was a high risk pregnancy since my first son was born at 34 weeks. They were watching me carefully and did extra ultrasounds and I even had a shot in the 28th week to help speed up lung development. At my last ultrasound at 29 weeks the hernia did not show up. The surgeon thought this was positive because that indicates it didn't develop until later. I started having contractions at 36 weeks. My husband rushed me to the hospital in Springfield (80 miles away). The contractions were 5 minutes apart but I was only dilated to a one, so they kept me overnight for observation and then sent me home. The next week at 37 weeks my contractions became more intense and once again we rushed to Springfield. We arrived at the hospital around midnight, this time the baby was coming! They prepped me for my repeat c-section and by 2:47 my baby boy was here. While they were sewing me up, my husband could hear the nurses talking and saying they couldn't hear my son's heart on the right side and they were trying to hear his left lung. Soon the NICU nurse came in to see Kyler. She said she thought his lungs were a little wet but she could hear his heart and lung and he was going to go with her for a little bit. While in recovery the mood was still light because we didn't think anything was seriously wrong. A little while later the NICU nurse came in and told us he had CDH, she explained what it was and said he was going to be flown to Kansas City for surgery. I went into complete shock. I started shaking so bad the nurse had to give me a shot to stop the shaking. My husband was torn whether to stay with me or go with our son, but I told him he had to leave. So my husband took off from Springfield and headed towards Kansas City. There was a lot of fog that morning so Children's Mercy couldn't send the helicopter. They were going to send the winged plane. The emt's drove to Springfield instead of waiting on the plane just to get a couple extra hours with my son. My sister arrived at the hospital at 10:00 and wheeled me down to the NICU to say good-bye to my son before his flight to KC. It was a hard thing to say good-bye. I checked out of the hospital on Tuesday and Wednesday my parents drove me and my 18 month old son up to KC. My parents took my older son home with them and I went to touch my son for the first time. He was in the ECMO room hooked up to the vent, oscillator, and IV. He didn't have to go on ECMO, thank the Lord. It was a scary sight to see all of those tubes going into my baby. I gently laid my hand on his head and cried. Two days later he came off the oscillator and had surgery. He had two teams of doctors (medical team and surgery team) working around the clock making decisions. He had a nurse around the clock as well. I was amazed at how everyone came together as a group to make decisions and we were allowed to be part of that process. I must say my son had the best care in the world. He went through surgery like a champ and did not need any blood. Each day he grew stronger. After 2 weeks in the hospital I finally held my son for the first time. I couldn't take my eyes off of him, it was the most amazing moment. By the third week he was off the vent and breathing on his own. His chest x-ray showed his left lung was nearly as big as the right and his heart naturally went back to the correct place. Feedings were a challenge at first but he soon caught on and began drinking from a bottle. During week 4 he began to nurse from me. The lactation ladies were great and soon he was latching and taking milk directly from me and the feeding tube got to come out. At first I was disappointed because he lost weight after going from feeding tube to nursing, but then he started gaining weight. Five weeks to the day we were told our baby boy was going home! I called my husband and asked if he was ready to come get his family and he yelled in joy. The five weeks I stayed in KC by myself because my husband didn't have the days to take off of work. I lived in the Ronald McDonald house where I met other families and some of the sweetest volunteers. My 18 month old lived with grandparents the whole time (I was very thankful they could keep him, he was well cared for and quite spoiled during that time). Having our family split up like that was one of the hardest things for us. I spent all day at the hospital, and my routines were the only thing that got me through the nights. I would come home, shower, pump, talk to my husband, tidy my room, and then go to bed. When we all came together again it was like waking up to Christmas morning. I thank God for my wonderful family and the wonderful doctors and nurses he brought into our lives. It was a difficult experience but one that strengthened our family bonds and faith.