Charlie-1, CHD-0


Two years ago I walked into a room, unaware of what I would see. Not sure what I would feel. And completely blindsided by it all. I stood shocked by my tiny, two month old baby lying on a bed, hooked up to double digit IVs, with tubes and wires coming out everywhere. 
We were told surgery went well, but when I walked into this, I wasn’t sure how. He lay motionless, under a heat lamp, and if you removed those cute little pumpkins, his eyes looked sickly. Those tubes would drain blood from around his heart for a day or two. The IVs would remain for most of our stay, slowly being weaned down. The large line going into his arm, the arterial line, would stay in a few days to monitor his blood pressure and help for easy access to blood. And he would breathe through a tube for a day or two. Unable to cry, unable to make sounds, however managing to throw up around the tube. 

He would wake up the next day slowly starting to move, but remaining quite sedated so he couldn’t pull tubes and wires out himself. We would read to him and rub his head. He would just stare back at us sadly, sometimes angrily. 

We would battle feeding tubes in his nose and strong willed doctors who really needed to know his intake. Doctors who weren’t prepared for an even stronger willed mom who said “no, he only nurses.” After long discussions, forced failed bottle attempts, and much frustration. Guess who won?

Charlie won this round and 9 days post surgery we would be discharged. Excited to take home our little boy. Terrified of what the future would hold. Feeling as if we were taking home a foreign object. Ready to embrace these new challenges, so we thought. 

Two years ago, I did not post this photo on social media or caring bridge, and I shared it with only a couple close friends. Today, I share it all of the time. Most recently, with the local news channel. Not this one, but one from another post-surgery was aired. 

I didn’t want to share it, I didn’t want to frighten people. I didn’t want anyone to feel the pain I felt. I didn’t want to make people squeamish (I am certainly not). I still don’t want to do those things. But I do want to raise awareness. 

So, I will continue to share this photo and photos like it. I hope you can view it and see hope. See children that need to be acknowledged and research that needs to be done. This was the first time I would see this sight, it was not the last. In two years, I have seen it three times. And I will see it, at minimum, two more. 

Two years ago today, this is what I saw. I don’t need the photo, it’s permanently burned into my brain, along with its smells, sounds, and feelings. I can’t share those with you as easily. But I can share this photo and I hope that you will help me to raise awareness, by sharing it too. 

With Love,

Charlie’s Mom

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