Race Andrew Essl! Born June 27, 2010. He weighed in at 5 pounds 14 ounces and was 18 inches long! We were so excited to finally meet the little man. We spent the whole day in awe and loved that we had another little boy to love on.
The very next day Race unexpectedly became ill and was flown to OSF Saint Francis in Peoria. The hour and fifteen minute drive to Peoria seemed like a terrible nightmare. We were numb and completely out of it. It didn't seem real at all. When we arrived to OSF we were greeted by a cardiologist who suggested we go to a private room. Cody and I both thought that Race didn't make the flight. There he was diagnosed with Hypoplastic Left Heart Syndrome. We were all in shock. We had never heard of it, and if we had, we never would have expected it to happen to us. The heart condition that Race has been diagnosed with will require at least three open heart surgeries. I can remember coming home that night and feeling lost. Lost because we didn't have our baby. It felt like he was taken away from us and we were still feeling numb. He has a broken heart and we were broken. Our hearts ached because our baby was hurting and there was nothing we could do for him except pray that God's will be done for our sons life. We hoped the next morning when we awoke that it was all just a bad dream, but it wasn't. What we wished was all just a dream, is now our life. Our family was torn apart. One child with grandparents and the other in a hospital bed. We felt guilty that we had to choose between our two children who would get our time and attention. Race and Revin are our lives and we wouldn't trade them for the world!
On July 7, 2010 Race had his first open heart surgery. This first stage of surgery is called the Norwood Procedure. He flew through recovery and was doing better than anyone had expected. Two weeks after his surgery we were told Race could go home if he started eating on his own, but this task was much harder than the heart surgery. Race had acid reflux and just refused to take a bottle. Because he refused to eat, after weeks of trying, our next option was to have a Nissen Fundoplication along with a gtube placement. This was the "fix" to get Race out of the hospital so he could go home to heal and grow. He could be feed through the g-tube while we worked with him on eating. On August 19, 2010 Race had the surgery and was going to be coming home a few days later. He started having issues with his g-tube site and feeding that they needed to keep him a few more days and thankfully they did. On August 27 and 28, 2010 Race had to have emergency surgery. His stomach had become distended and the doctors had discovered that his feeds were leaking into his open body cavity causing infection and peritonitis. On August 29 Race had to have another emergency surgery because of this issue and it was then that the doctors discovered that his bowel had been perforated. They had to bring out a portion of Race's intestine and he was given an ostomy bag. Our son with half of a heart was fighting a dangerous infection and was fighting for his life. It was hard watching him lay there in pain and not being able to hold and comfort him. Again on September 10, Race had surgery to help correct his issues but attempts were unsuccessful and he was taken back to the ICU to heal and rest. After a month Race had finally fought off the infection and was on the mend but we still faced the fact that he would need another surgery to put his intestine back into his body. On November 5, 2010 Race was taken back to surgery to close the hole in his intestine and place it back into his stomach. He did well, but because of difficulties with the first g-tube Race had to be fed with a TPT tube which went through his nose, down his throat, through his stomach, and into his intestine. Not the way any parent wants their child fed, but he was growing and that is all we could ask for.
On January 17, 2011 Race was finally able to come home!!! We were excited and scared. Excited because we were finally able to be a whole family under the same roof. I am not going to lie though, it was hard work and exhausting. Race came home on continuous oxygen and continuous feeds. He also had to have medications every 3 hours and have is oxygen saturations monitored. Race was readmitted on February 7, 2011 for low oxygen saturations, but was discharged a week later. He was then readmitted to OSF on March 6, 2011 to prepare for his next heart operation. He had his second stage, Glenn Procedure, surgery on March 15, 2011. He again did really well during surgery and did really well right after surgery. A few days later though his lungs started to fail. On March 18, 2011 Race had to be put on ECMO. It was very scary receiving the phone call that Race's health was declining and was going to be put on life support. We had another drive to Peoria not knowing if our son was going to make it. Thankfully though his lungs were better and he was able to come off of ECMO 3 days later. While on life support a blood clot went to Race's brain causing him to have a stroke. It affected his left side causing weakness in his arm and leg. Race then struggled with coming off of the breathing machine. His lungs and body were weak. He was fighting an infection that was discovered to be blood clots that had formed around his IV access lines in his legs. The sepsis was the reason his body was weak and the reason he wasn't breathing easily on his own. After Race jumped his hurdle he was faced yet again with feeding issues. Because of the extensive abdominal surgeries Race didn't tolerate being fed and had diarrhea which was causing dehydration. Studies were done to look at his intestines and at that time it was determined that Race just needed time. He was fed slow and his feeding rate was slowly increased. Right before Race's 1st birthday he was finally tolerating being fed again.
On June 23, 2011 Race was able to come home. Again he was sent home on continuous feeds, continuous oxygen, and medications around the clock. Although exhausting, we were so thankful that he was able to be home for his first birthday. We had him dedicated at church and had a big birthday party following. On June 27, 2011, the day of Race's first birthday, he started getting sick and wasn't tolerating being fed. The very next day we took him to see his cardiologist and he was admitted right away. He was severely dehydrated and was declining fast. Yet again Race was fighting to survive. After several different tests and knowing all this issues Race has faced, it was determined that when Race had his last abdominal surgery to put his intestines back into, that his intestines had been put back together wrong. There was a portion of his bowel that was allowing all the bad bacteria from the large intestine to get into the small intestine, which was causing all the diarrhea and dehydration. Again we had to send our son into surgery not knowing if he would survive. On August 5, 2011 Race went into surgery for a bowel resection and g-tube revision. Race surprised everyone and had an amazing recovery.
On September 12, 2011 Race came home! This time though he had in home nursing care to help us with his care. Because of his lengthy hospital stay when we brought him home is was almost like bringing home a newborn and not a 15 month old. Race started making great progress though and it all started fairly quickly after he came home. He started sitting up on his own, and he come off of his oxygen which was a huge step. We celebrated our first holidays together, he starting rolling, and then army crawling. He then started pulling himself up to stand and babbling. Within this last year and a half Race has made progress like every other child would have. We were able to celebrate many firsts. First time out to eat, first time shopping, first car show, which happened to be Vintage Torquefest and many more firsts. He has made great steps with being fed. He went from being fed continuously to being fed for only 20 hours, and then to tolerating having larger feeds throughout the day which allows him to be off of his feeding pump more often. He is now starting to become interested in taking tastes of food and sips of a drink. Some of this has been a very slow process, but Race will determine when he is ready for something new.
Most recently Race has been hospitalized for RSV and three times for feeding issues. On January 10 of this year Race underwent another abdominal surgery. He wasn't tolerating being fed. Because of the surgeries he had a lot of scar tissue and adhesions that had his intestines stuck together which was causing pain and pseudo obstructions. Race is a trooper and was discharged home on January 25th.
We don't take any moment with Race for granted. He was meant to be here and has a purpose to fulfill. There were many times in this journey that we begged God to take Race. Not because we didn't want him but because we didn't want him to be in pain and we didn't want him to suffer because we were selfish and wanted to keep him with us. We knew that if God took him that he would give us peace. Looking back now we are thankful that that prayer was not answered. Thankful that God is able to see the bigger picture. Race is a miracle. He is an amazing little boy and we are blessed to be his parents. He like every other kid has his favorite things. He loves Mickey Mouse, playing with his older brother Revin, watching TV, taking walks in his stroller, and loves making lots of noise. Race will still need another heart surgery in the future but it hasn't been determined as to when. All along Race has never followed the medical books and rules as to the way things should go, so he will determine when he is ready.