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Before Open Heart Surgery (Congenital Heart Defect in newborns)

Posted: 9 years ago

Before Open Heart Surgery (Congenital Heart Defect in newborns)

Days Before Open Heart Surgery, Down syndrome, baby, congenital heart defect in newborns

congenital heart defect in newborns

It was 4 a.m. and after one last date night before Anderson’s open-heart surgery, I was sound asleep from the two glasses of wine. But then I heard it. At this point it’s unfamiliar- an angry cry from our little man.

This is one area of parenting that we are very strict on. We sleep train and once the kids sleep through the night, there is no going back. But this morning… this morning was different. I scooped up our sweet boy, put him in my arms and rocked him back and forth, back and forth and back and forth.

I spent nearly an hour looking at him, marveling at the perfect lines of his face. Savoring his button-nose, his pouty lips and puffy cheeks.

Many people have asked us how we are doing with Anderson’s surgery coming up. The answer is:  intense. I know that’s not grammatically correct, but it’s the only word I can think of to describe what these days leading up to surgery feel like.

Everything feels more. The bad moments are really bad. And the good moments are really good. The mundane has left our home.

Wednesday was one of the really bad days. It started with forgetting my wallet and realizing I was going to have to endure our last cardiology appointment before surgery without coffee. I know, I know…the horror. A moment I normally would have been annoyed about, but then moved on, made me a crying mess.

Days Before Open-Heart Surgery, Down syndrome, infant

Because reality is setting in. The reality is that Anderson will have to go through something more traumatic than I can bare to fully imagine. The reality is when I think about pacing the waiting room for 4 hours, I feel like I’m going to vomit. The reality is that the tiny boy who is normally always smiling, will know more pain than I have known in my entire life.

The reality is this: the emotional pain we’ve experienced in the last year will seem almost juvenile in the coming days.

But even in this. Even in these final days of waiting, there is good. So much good. This week I have tried to soak in the small things more than I ever have before.

Since we will be leaving Violet with her grandparents during the surgery, I’ve cherished things I’m sometimes too busy to notice. Like the way her little legs still have traces of baby rolls that I know will soon disappear. The way she begs me to go swimming, “Les go see wah-er”. Instead of being annoyed by her absolutely losing her cool when I leave the room, I’m relishing in the fact that I will never have someone want to be around me as much as she does right now.

If I’m going off of chances, Anderson will be just fine after surgery. But none of us ever know what tomorrow will hold. So, tonight I will break the rules again and I will rock both of my children, back and forth, back and forth and back

Days Before Open Heart Surgery, Down syndrome, infant

Because of the Lord’s great love we are not consumed, for his compassions never fail.- Lamentations 3:22

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