The Heart and Soul Family: November 14th

Wednesday, November 28, 2012

November 14th

Arianna's Pediatric Cardiothoracic Surgical Team: Dr. Thompson (Left), Dr. Teodori (Back right), & Richard Burt, P.A. (Front)

Just one day shy of 4 weeks pos-op we went to see the surgical team to make sure everything was going well. A week before we saw the cardiologist and had a follow-up echo. So far everything looks PERFECT!

They kindly reminded us these valves don't last forever. Dr. Teodori expects about 10 years of out of this valve but there are many factors to consider. It could be sooner than that. Either way we do what we've always done. Go to cardiology appointments every 6 months and monitor her from here. When the time comes again we will replace her pulmonary valve again.

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Arianna Marie

Arianna was born on 11/26/06. 4 weeks premature, and weighing 4lbs 13ozs. She was born with a congenital heart defect called Tetralogy of Fallot, which is actually 4 heart defects, and was later diagnosed with an ASD. She had open-heart surgery on 5/22/06. Her surgery was to patch the VSD, patch the ASD, widen her pulmonary artery, and attempt to fix her pulmonary valve. They created a man-made pulmonary valve out of myocardium to avoid a conduit placement, which would require multiple surgeries. On September 21st, 2012 we got the news that Arianna's right ventricle pressures are too high and she needs a pulmonary valve placed. When we meet with the surgeon we found out she also has pulmonary branch stenosis and a possible defect in her tricuspid valve. He will be addressing all of these issues at the time of surgery. On October 18th, 2012, Arianna had her 2nd open-heart surgery.

At 5 weeks old she was diagnosed with a genetic disorder called 22q11.2 Deletion Syndrome, which is caused by a deletion of a small segment of the long arm of chromosome 22. This disorder has many names such as 22q Deletion syndrome, Velo-Cardio-Facial syndrome, DiGeorge syndrome, Shprintzen syndrome, and Catch 22. So far there has been more than 180 anomalies reported in this syndrome, which is highly variable from person to person and no individual has all of the anomalies. Arianna has overcome many obstacles and we find peace in knowing that God is working miracles in her life. We set this site up to share our family journey. We know that God has a special plan for Arianna and our family!

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Wednesday, November 28, 2012

November 14th

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