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Addison's Heart Journey
Oct 21, 2017 Latest post:
May 20, 2018
Addison and her twin brother Jagger were born on March 17, 2007. Initially, Addison looked good, but after further examination in the nursery she was noted to have some problems. The nurse began having difficulty keeping her oxygen saturation up without the use of supplemental oxygen. She also noticed that her heart sounds were on the right side instead of the left. Her chest x-ray confirmed dextrocardia as well as some other problems. Her thumbs were attached to her hands by only a small piece of skin. Her pediatrician soon made arrangements for her to be transported to Arkansas Children's Hospital by Angel One. One of the hardest things was watching my tiny baby girl being put on the helicopter after only seeing her for 5 minutes. When they brought her in for me to see for the first time she was already in the incubator and hooked up to all the monitors. Her eyes and ears had already been covered in preparation for the flight. It was a difficult decision, but we decided that Daniel and my Dad would go with Addison to ACH and meet Daniel's dad while my mom stayed with Jagger and me in Texarkana so I could recover. About 2:00 that morning, I received the call from the NICU doctor telling me that Addison had VACTERL association and had severe cardiac defects. Over the next week we continued to learn of more problems Addison would have to face. Besides having dextrocardia, she had an interrupted aortic arch and a complete AV canal with a very inefficient single valve. Addison had her first major heart surgery to connect the two pieces of her aorta when she was two and a half weeks old. It was a very lengthy surgery and a very difficult recovery. The night of her surgery she went into cardiac arrest and had almost 15 minutes of CPR. It was the most terrifying 15 minutes of our lives. She was then taken back to the OR for an emergent 2nd open heart surgery. The next several days were very critical and we were not given a great prognosis. But, with the help of our prayer warriors on CarePages, she pulled through. The next several months were filled with ups and downs. She developed multiple infections including a life threatening bowel infection and pneumonia. During this time we also learned that she had had several strokes. When Addison was five months old her breathing became more and more labored. They had difficulty keeping her oxygen levels up requiring her to be placed back on the ventilator. She also began having seizures at this time. She then had her 3rd major heart surgery in which the surgeon reconstructed her heart into four chambers instead of two by building a wall down the middle of her heart. He also had to create two valves from the her single inefficient valve. Despite the long and difficult surgery, she had a much better recovery than before. Before we brought her home, she also had a feeding button and nissen procedure on her stomach as well as having her thumbs amputated. But finally, we were able to bring her home when she was six and a half months old. It was wonderful to finally have our family together for the first time. Addison came home with oxygen and a feeding tube and on 27 doses of medications a day. Yes, I said 27!!! She was on 10 medications total, several given 2-4 times per day for a total of 27 syringes of medicine per day. Those first few years we literally ran on fumes, having to get up several times per night for medications, feed bag changes and diaper changes (babies on diuretics require frequent diaper changes even at night), not to mention all the times she set her alarm off when she rubbed her oxygen out of her nose!!!
Over the past 10 years Addison has overcome so many obstacles. She has had many more surgeries including a partial bowel resection and colostomy bag, colostomy bag reversal, 2 ear surgeries, button removal, a 4th open heart surgery to replace her mitral valve and most recently a neck surgery. To say the least, there have been a ton of ups and downs. She required extensive physical, occupational and speech therapies during her first 5 years of life to help get her on track with her peers. Thank God for these wonderful therapists! Addison started walking around the age of 3 1/2. She also weaned off her oxygen around this time. She was able to come off her feeding tube around age 5. Since then she has hit the ground running. She continues to have her setbacks, but she has overcome each one with a fighting spirit and the help of all our amazing prayer warriors. Shortly after we started this journey with Addison and Jagger, we welcomed Katelyn in to our family and then 6 years later we welcomed Hattie Jane. Life is never a dull moment in the Bryson household for sure!!!
Addison’s heart journey is not over. She will need a larger mitral valve in the near future. For now we are enjoying her health and look forward to what her future holds. We started this journey in 2007 and CarePages offered us a wonderful medium to keep are family and friends updated on Addison’s surgeries and progress. Unfortunately, in October 2017 CarePages made the decision to close their website. So we chose to change over to Caring Bridge in order to continue to keep our friends and family updated and keep this precious line open to all our prayer warriors. Addison is 10 now and she wanted to name her new page which she perfectly named Addison’s Heart Journey. We want to welcome all of our prayer warriors from CarePages and hope to continue to gain some new ones as we embark on this next chapter. Thank you to everyone for your patience during this time I have (painstakingly) transferred every CarePage update and Prayer Warrior message to our new Caring Bridge page. It’s all here and hopefully we won’t have to change again any time soon ;)
So…. Welcome to Addison’s Heart Journey!!! As you can see, Addison is a SPECIAL little girl. Her STRENGTH and WILL have been such an inspiration to so many people. And we are so thankful for all of her PRAYER WARRIORS out there. God blessed us with this amazing miracle and what a testimony her life will be.