Musings of a Heart Family: Another Gift From Above

Sunday, October 26, 2008

Another Gift From Above

Early this morning, I was going through some old files and videos I'd made of Tommy. Imagine how happy and stunned I was to find this:

It's Tommy at 5 months old wearing a NEMO onesie! How incredible. I had forgotten he ever had it. I gave away many of his clothes a few months later after he outgrew them and never thought of them again. What a pleasure and a treat to find this after I had been sharing his memory with a new friend of mine online.

I hope you enjoy Tommy's hello from Heaven as much as I have. What a blessing.

1 comment:

LJR said...: What a blessing to find that! I think it was a special little high from heaven. He looks completely adorable in that picture by the way!

~HUGS~ thinking of you

Lori; October 26, 2008 at 4:53 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

Sunday, October 26, 2008

Another Gift From Above

1 comment:

Diagram of Tommy's Heart Defects

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