“Alex was born August 25, 1998 in Portsmouth, NH. He was born via Emergency C section. I had a normal pregnancy r my water broke Alex’s heartbeat slowed and stopped. Dr’s did not know what was going on because on all the tests it looked as if Alex was a normal healthy baby. When they did the c section I was given anesthesia and by the time I awoke that evening Alex had already been transported from Portsmouth General to Boston Children’s Hospital. Over the next few days they would call to give me updates but I was not allowed to leave the hospital. They assured me that they were taking great care of my angel. They were impressed that for a heart baby was going to have a rough road but that due to his size, He was a healthy 8 lbs 14 oz the journey would be a little easier.
Alex had some really major defects. He was born with L-tga, complete heart block, regurgitation of the tricuspid valve and Epstein’s Anomaly. Impressively this delicate child who would have such a war ahead of him only stayed in the hospital for 5 days. I got released just in time to make the hour and a half journey to go and bring him home. Our lives were forever changed. At this point the severity was beginning to set in as when we came home we would now have Home health coming in and Ng Tube feeds and multiple medications. Things I definitely was not expecting as remember I had a healthy uneventful pregnancy.
A few days after Alex came home from the hospital we had to go see a Pediatric Cardiologist. He would become one of our closest friends as we saw each other very regularly. The defects and the severity of them concerned him but he wanted Alex to gain a little more weight before we tried to intervene so he added a few more medicines and we would see him in a week. Well this was only day 8 of our Roller Coaster ride of a journey. Day 9 would prove to be very challenging as this was our first trip to the ER. I woke in the night to find that Alex just did not look right I could not pin point what was wrong I just knew something was. Well after the Hour long drive with a screaming child and seeing the cardiologist whom so graciously awoke to come spend hours with me in the ER it was determined that the heart was not doing well Alex had gone into Congestive Heart Failure. We stayed in the hospital overnight. Late the next day we met with the cardiologist and a heart surgeon. it was time to decide a new plan. After many discussions they added more meds and came up with a new target weight and we were on our way back home y to have a pacemaker implanted. After numerous more hospital stays in Oct. 1998 I handed my baby over to a surgeon for what I hoped would be the only time. He came out of the pacemaker surgery like a champ. How could this little fighter be so resilient. Watching him fight gave me strength but it was also tearing me up as I felt so helpless. I wanted so much to comfort him but I could not take away the pain. After a couple of weeks we were sent home.
Alex did well at first. It seemed like the pacemaker was helping. After a couple of months he started having difficulty again. We found that once again Alex was not gaining weight, he was struggling to breathe and if you laid him down he just could not get comfortable and would scream but it only took a minute of screaming and he would turn blue. At this point we had made it to 9 months old. Once again I was sitting in that room waiting to talk to the cardiologist and the surgeon. a plan in just a few days they would implant a prosthetic valve to give Alex another shot. Due to the fight we had already fought the surgeon gave Alex a 15% chance to survive surgery. So with what seemed like all odds against me I said a prayer with the surgeon as he scooped my baby away. He promised me that if things did not go as planned he would come and get me so that I could hold my little love one last time and reminded me to stay strong as Alex was in God’s Hands. The hours that day seemed like days. They would come update me but I was struggling to understand. Finally after 9 hours I got to go into the Recovery room where they were just settling in my little warrior. After a few hours we would get to go to ICU. Here I was allowed to see Alex only 10 minutes out of each hour. I never left the waiting room as I knew things could turn at any moment I needed to be close. My parents would bring Alex’s older brother Davis to visit mommy at the hospital. He was just a little over 2 so did not really understand why mommy and brother went away.
After the valve was replaced Alex did well for a few years. Don’t wrong we still struggled but we did not have surgeries. Instead we had hospital stays for pneumonia, RSV, failure to thrive and things heart babies fight. We continued to fight. To date Alex has had a total of 7 open heart surgeries he is on pacemaker number 3 and valve number 2. His last surgery was August 24, 2007. A day that will forever be etched in my mind as it was the day before he turned 9. Alex coded on the table the next month our battle would go into overdrive. Alex spent the next month on ECMO. Dr’s talked to us about our options. started testing once again for Transplant. We would once again be denied. The first time transplant had been discussed was during those early days when we first were deciding what the best option for Alex would be. At this time Alex does well we take it day by day. We do not know what tomorrowholds we just take it day by day and See what tomorrowholds. For all of our kids we need more money For Research and Funding so that one day No Child will have to suffer. Alex enjoys what a lot of kids his age do he loves video games and riding roller coasters along with many other things. He wants so badly to go sky diving but his mom is scared of that one. He loves to travel and looks forward to cruising the oceans on the mega ships and taking a trip across country this summer.”