The Heart and Soul Family: Quick update

Wednesday, April 30, 2008

Quick update

I just typed a quick message and poof off it went into cyberspace. UGH!!!

I just wanted you to know we are all moved in and living out of boxes. I hope everyone is doing well. I haven't had the chance to check on my heart babies...so you all better be behaving yourself!!! I'll update more tomorrow. I did talk to the pulmonologist finally but don't have the energy to write about it tonight.

Well better go cause I'm nodding off as I'm typing.

2 comments:

Tina:0) said...: Gotta luv living out of boxes! Hope you're enjoying your new house! I'm anxious to hear what the pulmo had to say... hopefully it was good news?! Enjoy the new house, as well as putting everything away, LOL!; May 1, 2008 at 5:11 AM
Samantha said...: Oh my! I hope that you don't have the energy because it is all good news...I will be checking in to see what he/she had to say.

I feel your pain with the living out of boxes...I remember that very well...and it was almost 5 years ago!!!

Good luck getting settled...yay for getting in there!

Love ya!
Samantha; May 1, 2008 at 7:08 AM

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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, April 30, 2008

Quick update

2 comments: