Olivia's Fight against CHD
$4,331.20 raised of $5,000.00 goal
Nov 26, 2024 to Feb 14, 2025
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Louie and I (Vicky) are the proud parents of Olivia a fun, loving energetic little girl. She is the youngest of her three sisters, Monet, Louisa and Emma and she loves spending time with her family. She has a big personality and she is full of sass, and has brough brought so much joy in our lives.
Olivia was born with multiple heart defects caused by a genetic condition called DiGeorge syndrome. Her heart defects are Truncus Arteriosus, VSD, ASD, and MAPCAs. This means that her pulmonary truck and the aorta failed to properly divide resulting in one trunk arising from the heart, she also had a hole in between the top chambers of her heart and the bottom chambers. MAPCAs are collateral arteries her body created to help supply blood to her pulmonary system.
Olivia's fight began, her case was so complex that our home childrens hospital did not feel comfortable perfoming her operation so it was decided she would be trasfered to Lucile Packard Children's Hospital in Palo Alto. We never imagined having to be four hours away from home let alone prepare for the unexpected medical expenses. Olivia had her first operation when she was just 2 weeks old. We learned how complex and severe her case was and unfortunetly she was unable to come off the ventilator and spent the next two months in the CVICU intubated. The weeks to follow were some of the most difficult times in our lives. I stayed bedside the entire time while Louie had to travel back and forth every weekend due to work and our older children being in school. Olivia began showing signs of heart failure and at just two months old had to go back into the OR.16 hours later we received news Olivia received her full repair and the healing process began.
After 133 days our family was home together and we began to enjoy life again! Over the last five years we have had hundrends of doctor appointments, procedures, labs, echos, and trips to hospitals but we have made lots of memories. We have been enjoying life together and Olivia has been thriving. Shes grown in to a beautiful sweet spunky kid. We made it FIVE years without any major operations, but unfortunately Olivia heart is struggling and her fight continues. Her right ventrical has been working hard due to a leaky valve and her pulmonary arteries are in need of reconstruction. She will be having her third open heart surgery February 13, 2025 in Palo Alto. We dont know what to expect but anticipate a 4-6 week stay, God willing it wont be this long.
Please pray for our girl and the team who will be performing this huge operation on her little heart.
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This girl is so ready to be home! Thank you for all your prayers, messages and gifts. She feels so special. She is remarkable and AGAIN is on her way out of this hospital. We are so close. This time things are being reviewed very closely! We plan to leave for good this time! How many people do you know who have had 2 open heart surgeries in one month and can bounce back unfazed! This kid has some super powers! The recovery road is slow but we take it day by day.
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Olivia has been doing great, if you didn't know what she had been through you could never tell by looking at her. She's a strong happy bossy kid. She is desperate to get back to her routine. On the outside things are healing nicely.
Unfortunately, 2 days after we came home we received a call requesting that we bring her back to the hospital for additional testing. One of the test they did before discharge showed evidence of narrowing to her left pulmonary artery. The CT did confirm that she has some type of "kink" that needs to be repaired. We are unfortunately heading back to the hospital and she is scheduled for another open heart surgery for Friday, January 24, 2025. Again we ask for prayers for Olivia. Thank you all who have continued to share her story.
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Olivia surgery was successful. It was about 10 hours. They worked on several areas to her right arteries and one to the left. Her heart pressures are good and she remains stable! I'm so thankful for everyone's prayers and support! I can't wait to hold my baby!!
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Merry Christmas!!
I want to thank each one of you for all your support and prayers. We have booked hotels, we are just under 2 weeks out. Surgery is scheduled for 1/7/25 but plan to head out 1/5/25. Christmas looks a little different this year being under quarantine, but we are greatful to be together. Thank you all so much for being a part of our Journey and praying for Olivia.
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Today we got a call from the hospital requesting Olivia surgery be moved up to January 7, 2025. There ar some things that need to be sorted but we will have an official confirmation within the next two days. This is a lot to take in since it's only a few weeks away, but all in gods hands. Thank you to all who have purchased and donated. More updates to come.
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