Tuesday, October 31, 2006

Aidan was born on August 18, 2004, with an undetected heart defect. He was our first born, a beautiful and what we thought healthy baby boy. At the hospital my husband and I had some concerns about Aidan and questioned; his non eating habit, color and coldness of skin, we were told of a murmur they heard and that they would watch it. We were ignored, blown off and treated as "new and over protective parents". Trusting the professionals we took Aidan home. Three hours after discharge is when our lives changed forever! Aidan woke up crying hysterically, as a first time mom I tried comforting him, changing his diaper and feeding him. After a few more attempts and nothing calming him, I called my mom. I began telling her that I thought Aidan was allergic to his formula or something for I could hear gurgling. My morn asked," If that was Aidan breathing?" I said, yes and she yelled, "I'm on my way". I screamed to my husband who was napping that something was wrong with Aidan! Within minutes Aidan's coloring became flush and he had red streaks all over his body. As we were walking out the door to take him to the hospital my mom was pulling up and together we took Aidan to the emergency room. After (our and a half hours of numerous tests, lab work and pokes they still did not know what was wrong with our baby. The Doctor then called the nearest hospital with a Neonatal Unit and it was that Doctor who diagnosed our sons' heart defect over the phone and immediately sent his transport team and medicine Aidan needed to stay alive.

Upon arrival at the second hospital we meet with the cardiologist and were told that Aidan had been "REVIVED" during transport, that he was very, very sick and of his heart defect; Hypoplastic Left Heart Syndrome (HLHS). HI,HS is one of the most complex and severe cardiac defects and remains the most challenging to manage of all congenital heart defects (CHDs). Aidan was born with "hall 'a heart" for his left side (the pumping chamber) was so severely underdeveloped, resulting in a situation where the left side of the heart is completely unable to support the circulation needed by the body's organs. If he was a candidate he would undergo a series of') open heart surgeries before the age of three and or need a heart transplant. We were devastated! Forty-live minutes later we were allowed to see Aidan, a sight forever etched in our minds. Our precious baby had so many wires and tubes attached to him, so many lights, monitors, nurses and Doctor's surrounding him. Our priest came and Baptized Aidan and Anointed him of the Sick then he was transported to a third hospital. Aidan was transported to Children's I hospital of Michigan where they were equipped to care for him and his "special" heart. After a week and a half of uncertainty things began looking better. Aidan's test results were coming back positive and he soon became a candidate for the surgery. The Is' surgery, the Norwood was performed on September 1, 2004. Thankfully and Lord willing he was home 2 weeks later. Aidan came home with a feeding tube which he only needed a week also with oxygen which continued until after his second surgery. Aidan remained homebound, only leaving the house for doctor appointments until after the second surgery due to the high risk of infection. Aidan had the 2`1 surgery, the Hemi-Fontan done at ten months of age (normally done between 4-6 moths of age) due to some wheezing and congestion. The Hemi-Fontan was performed on June 16, 2005. Again thankfully and Lord willing he was home 6 days later. Aidan no longer needed the extra oxygen! After a 6 week recovery all restrictions were lifted and Aidan was allowed out into the "WORLD".

Aidan is a thriving, fun, energetic twenty-one months old who loves life and everyone around him. He has the biggest, brightest brown eyes and a smile that will light up any room. Through Aidan's eyes and heart we have learned how precious life is; we've learned to love more, give more, be more patient and are definitely more faithful. We live one day at a time and do NOT take anything for granted. Simply put, we have become better people! Although we would never wish this journey on anyone we do NOT regret the lessons instilled within us. As proud, honored, dedicated and determined parents of a child with a heart defect it is our responsibility to do whatever we can in fighting for the cause. It is very important to our family that we tell the world about Aidan, our "MIRACLE", hoping to raise awareness about congenital heart defects.

Raising awareness is important on many levels-it will provide hope for families of CHD survivors and comfort to those whose loved ones have lost their battles; it will inform the public about symptoms of CHDs and possibly save lives. Aidan showed several symptoms of having a cardiac problem and his little body was going into shock before being discharged from the hospital.

HLHS is not correctable but can be treated with the series of three reconstructive surgeries or heart transplantation. The surgeries have been around for about 26 years or so and with medical technologies and advancements improving every day, that alone gives Aidan, his heart buddies and us; HOPE. Aidan will require lifelong follow-ups by his cardiologist, will require some heart medications, may also be at risk for an infection on the hearts valves (endocarditis) and will have to take an antibiotic such as amoxicillin before having any dental work done and certain surgeries to prevent endocarditis. Aidan will never participate in any physical contact sports; will always have to be careful of hard blows to his chest and be more careful throughout the winter months of simple illnesses such as the common cold or flu, for it could hospitalize Aidan causing more work on his heart. We wash our hands a lot more and use a lot of hand sanitizer as preventative measures! Overall, it is expected that children with HLHS, will have a good quality of life: have friends, play, and go on _just like other children. Aidan will have the 3rd and we pray final surgery, the Fontan June 27, 2006. My husband and I were again blessed this past September 30, 2005 with our second baby, a beautiful and this time healthy baby boy we named Gabriel.

First and foremost thank you God for blessing us with your gifts. Many thanks to our family; friends, co-workers and to all the heart families who have shown us so much love and support. We love you all and appreciate all you do for us. To all the wonderful Doctors, Specialists, Nurses and Staff who care for Aidan, Thank you. We hold each of you in our hearts for you're such a part of our family and our lives. Thank you for taking such great care of Aidan with your love, care, concern and most importantly your knowledge and wisdom.

Aidan, we love you and are so very proud of you, always be strong, fight hard and never give up.

-Kristopher & Jamie, Proud parents of Aidan and Gabriel, little brother to Aidan

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