Its crazy to say that the strongest person I know is a 20 month old, but it is so very true, and I would like to share my son Logan's story. If you see him today he is your average toddler: fun, curious, strong willed, into everything, the usual. Now take his shirt off: you see a battle ground and a chest and stomach full of scars.
Let's start in the beginning that day in September that would change our lives forever. While my husband and I sat watching the monitor during the 20 week ultrasound we were filled with such excitement as they told us he was measuring correctly then the room filled with silence as she started looking at his heart. She quietly excused herself and brought in the doctor where he told us our son had a congenital heart defect, unfortunately he couldn't give us much information we would have to wait three weeks to meet with a cardiologist. I remember leaving the office devastated, feeling so alone, and somehow responsible.
When we finally met the cardiologist he told us our unborn son had a heart defect that only 1% of babies with CHD are born with. Double Inlet Left Ventricle with Transposition of the Great Arteries. The doctor explained that Logan would need three heart surgeries in three years. We sat in his office completely shocked and unable to fully process everything that he was saying.
On January 13, 2015 Logan joined our family. It wasn't the typical amazing birthing experience. The minute he was delivered I was quickly shown his face and then a team of nurses rushed him to the NICU where he would be monitored. I didn't get to see him or hold him for three hours. I wish I could say that was the longest three hours of my life but we would have many more long hours over the next year. On day two of being alive Logan got a terrible infection the doctors could not find the source of, this lasted two weeks. Finally a surgeon reviewed his XRays and found that his heart wasn't pumping enough blood to his body and it compromised his colon. He was rushed to surgery where they had to remove the dead organ leaving him with a colostomy. It was really touch and go for a few days following his surgery. Logan was literally knocking on heaven's door. He stabilized just enough to have his first open heart surgery five days later. Here we have this three week old that has now had two extremely serious surgeries, one which almost killed him, but his will to live was much greater and we were able to take him home from the NICU 2 1/2 months later.
In May of 2015 we found ourselves back at the hospital so Logan could have a surgery to have his colostomy taken down and be reattached. We were thrilled for this we had no idea this was something that would ever be possible. He was successfully reattached and we were even told some of his colon may grow back!
We returned in August 2015 where Logan was to have the Glenn procedure which is the 2nd of 3 heart surgeries for his condition. This is a huge surgery where they fix some of his defect to get him to have a more normal heart function at the same time they fixed the transposition buying him a little time until he his final surgery. Leaving the hospital this time we felt a sense of relief knowing Logan wouldn't have another surgery for two years. Boy were we wrong. At the follow up appointment when the doctor looked at his routine echocardiogram they discovered that Logan had some blockage in his VSD that would need to be removed. This surgery is a little tricky, the blockage is really close to where your heart keeps rhythm. We spend a week in the PICU where we couldn't hold him and he was kept sedated so no wires got bumped. Everyday the doctors would come in and turn the machine all the way down to see if his heart would find its rhythm. After possibly the longest week of our lives it didn't look like his heart would ever beat on its own again. We can live with the last five surgeries but lets back up now, a pacemaker sounds terrifying. His bottom chamber doesn't work at all, literally if his pacemaker stopped working for any reason he would die. We trusted his team of doctors and February 2016 Logan had his pacemaker put in. It works amazingly and we have had no problems.
Logan will have his final surgery the Fontan to fix his defect either the summer of 2017 or 2018, depending on what his body decides. He will also have routine battery replacements for his pacemaker the rest of his life.
For now we have a happy healthy boy we are so grateful to have in our lives.