I took Ben into his cardiology appointment this afternoon. My friend across the street was a complete doll and offered to take the girls for me. I was happy to drop them off and Ben and I drove away for his appointment. It was to be a typical appointment. I anticipated the much squirming and squawking through Ben’s echocardiogram. We played peek-a-boo, I ate his toes and then I let him eat my necklace. Anything to keep him relatively happy. He survived his 30 minute echo like a champ and we walked back to the patient rooms to wait for the cardiologist evaluation. We snacked on an almond poppy seed muffin together and pulled silly faces at the camera to send to Jesse. Everything was a typical day.
And then the cardiologist came in. She was her usual wonderful, happy self. I had no reason to suspect anything was amiss. I tried to listen to what she was saying, but Ben was out of patience by this point and was throwing a fit. I assumed she was saying the normal, “We’ll keep watching it, but he’s fine.” I couldn’t hear her words, but I could tell her facial expression had changed. She knew I wasn’t listening. The concerned look in her eyes is what finally snapped me back into focus. I realized today wasn’t the normal. I watched her eyebrows furrow and then I finally found it in me to ask, “Wait, what is it that we need to do?”
“We need to fix the hole now,” she said. “It’s just not closing and if we don’t fix it soon, then he will go into heart failure.”
Oh.
“So like medicine? Some kind of wire through his groin?” I naively asked.
“No. We will need to do open heart surgery to patch his hole.”
And then my own heart fell through the floor. I flashbacked to the first time the on-call pediatrician at the hospital said, “Oh my, Ben has a murmur.” It was his last check before we could take him home from the hospital. I remember feeling annoyed, and realizing that this was going to be a real trial. I did my best to nod and say “Yes, okay, that’s fine” through the rest of today’s discussions. I felt eerily calm. At one point I wondered if she thought I didn’t care. I wasn’t freaking out. I think I was in shock. The whole time Ben moved around, gave me kisses, yelled a lot and let me know it was time to go home. We said thank you to the doctor and left. I made it out the door and down the hall. I pushed the elevator button, and I just couldn’t hold it back anymore. I started to cry. I was so glad no one was in the elevator. I cried down the elevator, out to the car and most of the way home. At one point, I tried to call Jesse. I was able to tell him that Ben needs open heart surgery before I was hyperventilating and I had to pull off the phone and road.
Ben isn’t sick. He’s not dying. But they need to saw open his little chest and operate on his HEART. That scares the living daylights out of me. He has a VSD, ventricular septal defect. It is a hole in the ventricular septum, the wall dividing the left and right ventricles of the heart. Ben’s is a rather large hole and it isn’t closing, like some do. There’s too much blood flowing through it. His heart is working too hard pumping the extra blood and it’s enlarging his heart. Fortunately, the blood hasn’t made it to his lungs—yet. And so, we operate.
I have moments when I’m strong. I know he’ll be okay. I’m grateful for modern technology that has found this hole and I’m grateful for the surgeons who will (hopefully) successfully repair it. I’m excited for Ben to finally put on some weight. I’m hoping he’ll grow like a giant after. But often I find myself wanting to cry. I don’t want them to cut him open. I don’t want to see him in the hospital. I don’t want to see my baby in pain. I don’t want him to struggle during his recovery. I don’t want the threat of something going wrong. I just want him to crawl about my floor and scream at me as he pounds his wooden train into the floor. I want to only worry about what pajamas he’s wearing and whether his diaper will hold all that poop in the morning. I don’t want to worry about his heart.
But I am. And now every time I feel it race, I’ll be scared. Scared to let him cry, scared to let him eat sugar, scared of anything that will make his heart pound even harder. He now has a thrill, the doc says. His chest vibrates with each pump of his heart. That’s how hard it’s trying to pump. Poor thing. And yet he’s still the happiest baby in the world. The sweetest boy ever. I could hold him and kiss his cheeks all day.
I held him a little longer tonight as I put him to bed. He really is a sweetheart. He snuggles into me and soon I see his heavy eyes close. It was a long day for him. I just held him tightly and told him that everything will be fine. Because it will be. In the meantime, I share this pleading for a few extra prayers.
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| Sweetest boy ever. I have other pictures of him, but I'm too tired to find them tonight. The only energy I have left tonight is to turn on the tv and eat a gourmet cupcake from Brilliantly Creative friend. Everything will be fine. |
