Friday, March 28, 2008

Time to unload the heavy stuff

It happened again. Another baby died of heart defects. Annabelle was almost 2 months old and died of HLHS. I never met her or her family, but it's hitting especially close to home because her mom and I are both members of our local Saving Little Hearts support group. She was there at MUSC on Valentine's Day when I took valentines to the PCICU waiting area for the families. I didn't know she was there, much less any other child who was there. I did it to bring a little comfort to families who needed something to look at and hold when they couldn't be with their child. Something for the memory book to look back on.

It hit me like a ton of bricks tonight that this baby ONLY had a heart defect! I feel so selfish. I don't want to take away from the fact that a baby died today. I don't want to take away from the fact that heart defects are very serious and the NUMBER ONE KILLER of babies before their first birthday. But something inside me snapped to attention tonight. So many days, I am just status quo. I move from task to task and enjoy every moment with Tommy. Thoughts are starting to creep into my head. Bad thoughts.

Tommy had the flu a couple of weeks ago, just 2 days before he was to be admitted for his tracheal reconstructive surgery. He was in ICU for 5 days! How many kids do you know that get the flu and head to the ICU??? When the doctors would round, I could overhear them talking about how sick he really is. The logical part of me knows this, but my heart won't let itself believe. The head of pulmonology comes to his bedside and tells me to my face that there is nothing more that can be done that we aren't already doing. That's it. He is at the end of all medical reach right now.

He's well now, and home. I give him his medications diligently. I keep dust and strong smells to a minimum. I only use natural cleaners with no chemical smell. I make sure his toys are clean. I don't take him out in public very often. I wash my hands a million times a day. I have to keep him well! It began because his surgery was rescheduled for a few weeks from now. But even more than that, this is his LIFE!

I went to his room with the thoughts in the back of my head of the baby that earned her wings today. She ONLY had heart issues. Tommy coughed and coughed and coughed. He turned blue, gagged like he always does when he can't catch his breath and broke out into a sweat. All typical night time behavior for him. I had to go in and suction his trach and rub his head to help calm him back down. I looked at him and SAW how sick he really is. If I were anyone but me, I'd be in awe of how he lives each day.

I don't wish him to die! I will go back to being level headed mom tomorrow. But for tonight, I mourn with the mommy who can't hold her little girl tonight. I cry and pray that Tommy is not next. I try so hard to picture him growing up, but it makes me upset to my stomach to think that far ahead. I say two silent prayers nearly every day. In the morning, I thank God for letting him live another night and every night I beg God to let him live just one more day.

For now, he is sleeping soundly, just like any other baby. The turmoil inside his little body unseen. Please, little Tommy, grow stronger tonight. Fight to stay well. I never want my arms to ache for you.

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Diagram of Tommy's Heart Defects

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