Musings of a Heart Family: CHD Week!

Saturday, February 7, 2009

CHD Week!

Welcome to CHD Awareness Week! Congenital heart defects are the number one birth defect. They take the lives of more babies in the first year of life than all forms of childhood cancer combined. One in about 85 babies will be born with a heart defect. I made this last year for CHD awareness. It means so much more to me now than ever. Click on the thumbnail to play.

View this montage created at One True Media

View this montage created at One True Media

Why We Are Raising Awareness

1 comment:

SuperSymmetry said...: I've been following your story from Mommysavers.com. I cannot describe the feelings I get when I read about all you have been through with your family. All I can say is that my heart goes out to you. In Tommy's honor today I joined Saving Little Hearts, Inc. on facebook, invited my friends and donated my status in order to spread awareness.; February 7, 2009 at 8:38 PM

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Welcome To Our Page

This page is a place for me to empty the thoughts out of my head when they begin to overflow!

I am mom to 4 boys. Our youngest, Tommy was born with complex congenital heart defects, and cricopharyngeal achalasia (poor swallow). He was medically fragile and required a Gtube to eat, a trach to breathe and oxygen 24/7. I started this blog when he was just an infant, blogging about all of the ups and downs of our family.

Sadly, Tommy passed away in August 2008. His heart went into lethal arrhythmia from undiagnosed bronchopneumonia. Our world was shattered. I continue to blog as we adjust to life without our sweet Angel.

Tommy's Diagnosis

Tommy was born 7 weeks premature with a combination of congenital heart defects and a poor swallow. His heart diagnosis is as follows: Double Inlet Left Ventricle with Transposition of the Great Arteries, Pulmonary Stenosis, Ventricle Septal Defect, and Patent Ductus Ateriosis. This is also known as "single ventricle" or "univentricle". It basically means the blood containing oxygen and the blood without oxygen met in one place in his heart, mixed together, and recirculated. This gave him low oxygen saturation levels in his blood. His poor swallow, also know as dysphagia was caused by Cricopharyngeal Dysfunction. The muscle at the top of his esophagus worked sporadically. It caused Tommy to aspirate his saliva into his lungs. For this reason, Tommy was fed exclusively by a feeding pump. Tommy had open heart surgery at 4 weeks old, and because of his poor swallow, he could not make it off of the ventilator for 5 weeks. He required a procedure called a Tracheotomy to breathe on his own. Because of the breathing tube, he developed a condition called severe subglottic stenosis. This is scar tissue below the vocal cords. He could not breathe without his trach. The aspirations caused another condition called chronic lung disease. His brochial tissues were inflamed causing Pulmonary Hypertenison and asthma. He took a combination of medicines and required oxygen 24 hours a day.

Musings of a Heart Family

Saturday, February 7, 2009

CHD Week!

1 comment:

Diagram of Tommy's Heart Defects

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