It was a long day for me at work today. Not only did I get there early, but we were very busy and it kept me on my feet most of the day. When I wasn't waiting on customers or doing my nightly chores, I was daydreaming about Tommy. It just doesn't feel right if I'm not thinking about him on the 20th of every month. The closer it gets to August, the more I want to put on the brakes. I do NOT want to deal with this! But, I suppose by blogging, that is exactly what I am doing. Dealing in my own way by uncorking my feelings all over the internet.
I wore my CHD awareness ribbon pin tonight. I cut a tiny red heart out and wrote Tommy's name on it and stuck it to the pin so his name would show. I wore it all night and out of about 300 customers, only 1 asked "who's Tommy?". I am so happy she asked. It let me say proudly, "He's my son. He died 10 months ago today of Congenital Heart Defects." And with that, I brought a tiny bit of awareness into another person's life.
1 in 85 children will be born with a CHD. More babies will die in their first year of CHD that all forms of childhood cancer combined. Surgical intervention to "repair" a child's heart can reach the millions in just a couple of years-or less in some cases. Heart defects do not discriminate. There is no known cause or cure. Very little research, even less awareness!
A HEART DEFECT TOOK MY BABY FROM MY ARMS AND I CAN NEVER HOLD HIM AGAIN!
Almost 3 years ago, I gave birth to a beautiful little boy that I only got to hear cry naturally ONE time. I watched him stop breathing when he was just a day old and had to step back as a team of doctors and nurses brought him back to me. I saw him open his eyes for the first time when he was 6 days old. I never held him without him being attached to something to help him live. Oxygen, trach, feeding tube, pulse oximeter, apnea monitor...wires, wires, wires.
I watched him struggle after not one but two open heart surgeries. Neither one was able to fix his heart because my sweet baby's lungs were too sick. He was born too early and there was nothing anybody could have done differently. Heart needs the lungs, lungs need the heart and neither could sustain my baby.
One weak little cry and fear in his eyes as he took his last breaths. The constant beep, beep, beeeeeeeeeep of the monitor as it flat lined and wouldn't stop until I turned it off. I shut off that stupid machine. I told the doctors and nurses my baby's medical history as they worked on him, trying to save him. I stood right there and watched EVERYTHING! I was two feet from my baby and watched it all! I watched three different people exhaust themselves doing CPR, two different people breathe for him. Begging PLEASE, GOD PLEASE let them stabilize him so we can get this heart surgery over with. I had no doubt in my mind that Tommy would be okay after cheating death so many times in his short life.
Being born 7 weeks early with part of his heart missing.
Stopping breathing in the NICU as I watched.
Coding at 4 weeks old.
Developing serious infections in is bloodstream, fluid in one lung and the other lung collapsed, all in one day, just a week after open heart surgery.
Being told he had chronic lung disease and we could not proceed with any more heart surgeries. That there were no options.
Surviving the flu twice in a 2 month period.
Surely, my baby would not leave me??? But leave me, he did. His body could not go on after all it had been through. Some thing I have never shared...according to his autopsy, Tommy was in heart failure. Could he have been listed for a transplant? We will never know. Had he not contracted bronchopneumonia maybe the heart failure could have been caught in time and he could have been listed. Would he had made it to the top of the list and would a heart have been available? Do I ponder these questions every single day? Yep.
There's no moving on. There's no getting over it. There's no hearing "he's in a better place". Sure, I believe he's in Heaven, but that doesn't stop my arms from aching and my heart from being shattered and never fixed again. It doesn't bring back my little boy. It doesn't stop the tears that fall. The love never stops and truth be told, the hurt only gets worse as the days go on.