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Olivia- 2 days old |
Olivia Ann Williams was born on November 1, 2011 at 5:15pm ET. With much anticipation and worry, our journey began. Olivia was born with HLHS, Hypoplastic Left Heart Syndrome. After learning about her congenital heart defect at 22 weeks gestation, we were determined that under no circumstances would we have any regrets. We traveled to Philadelphia PA, to CHOP.
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Our first Christmas- RMH style |
Olivia underwent her first open heart surgery, the Norwood, at exactly one week old. Handing over our new addition was one of the hardest things we have ever had to do, but we knew we had no other options. Once in recovery, there were several bumps in the road. It seemed like for every one step forward... she would take four steps backward. She did get over the hump though and was discharged at 22 days old.
We stayed in the Philadelphia area through Christmas and made the long car ride home on December 29, 2011. The visit home didn't last long and we ended up flying back to Philadelphia three short weeks later due to a narrowing in her Sano Shunt. We made the executive decision to remain with Olivia in Philadelphia until her second surgery at 4 and a half months old.
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Olivia- post Glenn |
Olivia underwent her Glenn, open heart surgery number 2, at exactly 4 months and 15 days... March 16th, 2012. She again hit a road block. Chylothorax! Due to her extensive scar tissue from surgery number 1, the surgeons accidentally nicked a part of her lymphatic system. This bought us a longer stay in the hospital and very expensive low fat formula. Olivia was able to come home with strict follow up schedules here with her cardiologist and a detailed medication regimen.
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Olivia 10 months old |
Olivia has continued to grow and develop everyday. She has reached developmental milestones on time, has overcome some hurdles with low oxygen saturations that needed hospitalization and has even received comments about being a little too chunky. She will still need another open heart surgery in the next 2 to 3 years, but it all depends on her growth. We will return to the wonderful physicians at CHOP, who we will never be able to thank enough, for routine visits and follow-up. We are excitedly looking forward to celebrating her 1st birthday this November and loving our little girl more and more everyday.