Wednesday, October 20, 2010

Looking Back

I have two medium sized plastic totes in my shed. They're full of Tommy's things. Mostly toys. Today I decided on a whim to go out there and open them.

As I dug through the toys, wondering who would enjoy them, I felt myself get very possessive. I didn't want anyone touching my baby's things. Those were his memories all over those toys. His drool and trach secretion stains. The only thing I thought I might be able to part with were his blankets. I'm thinking of taking them out and donating them. I'm not sure when yet.

I found the shirt I was wearing when I last held him alive. And gone. I wore it for 3 days after that, not wanting to change out of the clothes that last touched him. I have never washed it. I smooshed it back down into the bottom of the tote.

I found nursing notes, paperwork, and books. I took those out to read. I have his hospital records for the first month of his life, up until the day before his first heart surgery. We got them for his SSI appointment when we first applied and they gave us a copy. I learned some new things. I have read them before as a new heart mom, but now that I'm a little more seasoned, things made more sense. I have the reports from his birth and his very first echo. Very cool to read. Never could remember how long he was. 42 cm. That's just 16 1/2 inches.

I learned that his APGAR was a 9 and 9, but only because he wasn't pink. I learned he was born with SATS of only 68%, but within 30 minutes, he was up to 80%. I learned what the doctors found on their first echo, including the fact he had a PFO. I never knew that. I guess in the grand scheme of things, another hole in his heart wasn't that big of an issue when he only had technically one ventricle anyway.

I also found a lot missing. Most of the paperwork only shows his heart diagnosis and his cricopharyngeal dysfunction diagnosis. No notes about the time he stopped breathing in the NNICU while I watched a crowd swarm in to save him. Nothing about his frequent desats when we tried car seat tests. No nursing notes from the Special Care nursery about his day to day life. I wish I had those.

The only thing I found ironic was in the notes from his birth, it says he had a vigorous cry. I will never forget that sound. I would never hear him cry like that again. Sure he would whimper and laugh with his PMV, but never again would he cry and cry big lusty, lung filling cries. Mostly because he didn't need to. He wasn't unhappy. I guess people would say I am lucky to have brought home a baby that automatically slept through the night and never cried or fussed. But at what cost? He was fed by a pump, breathed with a trach, and monitored 24/7. He was never a typical baby. For that I will always mourn.

I don't know what I will do with his things in the shed. Call me selfish, but I don't think anyone else in the world is deserving enough to touch my son's toys. Maybe someday I will have grand kids and will think differently, but for now, they're safe and sound.

A box of memories that are mine and mine alone.

Growing up the oldest of 6 kids I never had much that was mine alone. I don't think I like it very much.

Diagram of Tommy's Heart Defects

Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries