The Heart and Soul Family

Arianna is doing great! She was doing so good that she was able to spend the night with my parents on Saturday night. Me and Robert had a much needed parents night out :)!

We ended up not going to Roberts aunt & uncles house because someone down there has a cold but we were able to go to his brothers and watch the super bowl. What a game! Cardinals lost but they sure played good.

We are actually getting ready to take Arianna for her synagis shots. :( I feel so bad cause she knows where we are when we walk in there and what they are going to do and she will start crying immediatly. Hopefully we'll just get in and out today.

I'm glad she is getting her synagis (RSV) shots today because tomorrow is our CHD Awareness Party for our support group and there is about 40 people coming. I honestly can't believe that many people are coming since we have had such a small attendance lately but it will be alot of fun! I'll have to post pics on Wednesday for you all to see.

Well better finish getting ready. I've been so busy planning this party and working (thats right I'm officially working) that I haven't read up on any of our heart buddies. So...you all better be behaving!

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!

9 comments:

The Portas said...: I'm so happy to hear that you and Robert got out for some alone time. YAY! And also that you can get the synagis over with for another month...we're due today, too!

Have a healthy week! Oxoxo; February 2, 2009 at 12:51 PM
mina said...: I'm sure the CHD party will be a great success. Hope everyone stays healthy!; February 2, 2009 at 1:04 PM
Tina:0) said...: SLACKER!! (LoL) How great that you're 'working'! I can't wait to rejoing the working outside home force. (Not that I want to leave my girls, cause I don't!)

GLad you two were able to get out a bit. Too bad the Card's lost... darn Squeelers (that's a Browns fan talking!)

Sending big hugs!; February 2, 2009 at 6:52 PM
Amyacl said...: So glad Arianna is doing better! Hope the party is a lot of fun!; February 2, 2009 at 6:54 PM
Unknown said...: Hope everything is going good, I have not heard from you in awhile....

Have fun at the CHD Party, hope everything goes well. Take care of yourself.

Karen.....; February 2, 2009 at 9:19 PM
Anderson Family said...: Date night! It's good to remember why you picked him.

The party was a HUGE success. You're amazing, as always!; February 4, 2009 at 3:49 AM
Mami Adame said...: Oh I am so glad Arianna is doing well! Boo on the shot, but its a necessary evil! Angelina gets hers on Friday. Hope your party went well!; February 5, 2009 at 2:47 AM
Tina:0) said...: Hey, girl! I've left you something on Vaeh's page:0)...; February 6, 2009 at 6:55 PM
Tina:0) said...: This comment has been removed by the author.; February 6, 2009 at 6:55 PM

The Heart and Soul Family

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Monday, February 2, 2009

9 comments: