November 3, 2016

Louis' surgery was October 17th, and he has been home since October 26th. He had his first check up with his surgeon on November 3rd. They weigh him and measure him and listen to his heartbeat and check his pulses. We changed his diaper 4 times before our one hour appointment was up (he's a healthy eater). And that is basically what they told us! Louis looks and sounds great and what's important now is his growth. He weighs 8lbs 15oz, probably more now, and he is just over 22in long.

I know that Louis was home for three weeks before his surgery but it feels like we have reset the clock. Everything is sort of new again. Dan and I are re-learning his coos and cries and trying to anticipate Louis' needs, just like normal parents! He likes when you hum and sing to him, but Dan only knows the Grateful Dead Discography and I'm a little worried my favorite Fiona Apple songs might be a bit too sullen for a baby. We are working on expanding our musical taste. 

Everyone asks how things are going. It's still hard to answer. We have sleepless nights, and wee morning hours of inconsolable crying we can't diagnose. But it's not heart surgery, so it hardly feels mention-able. This whole experience doesn't make the normal new-parent things any easier, it has just made us more patient and grateful for the quiet moments in between the chaos. Well, it's made us grateful for the chaos too. 

Even after Louis spent two days in the pediatric floor of the hospital and they let us take him home, I still felt like we were waiting for more bad news. It is hard to believe he is all better after seeing him so sick. So much happened that I had no control over and couldn't fully understand. Everyday I get these bouts of overwhelming emotion. I find myself holding back tears when I'm checking out at the library, or chatting with a friend over coffee. Yesterday, Dan and I went to our favorite store, Kingma's, to buy groceries and I was so excited to introduce Louis to our favorite grocer, Ed. Ed saw us right away and he said, "HES HOME!" and I cried. I am crying right now thinking about it.  I get to share my healthy boy with our grocer, with our families, with our neighbors, with the whole world, for his whole life. I didn't know I would be so very grateful for that. 

We will have an in-home nurse visit Louis to make sure his development is on track. We will also visit his cardiologist within the next two weeks to evaluate his post-op progress.

Sometimes it's hard to sleep. It's hard to sleep because of feedings and diaper changes, but it's also hard to sleep because I can't stop reviewing all we have been through and reveling in the strength of such a tiny being. He is a gift. I feel like every experience I have ever had, good or bad, happy or sad, has shaped me to be his mother.  

Dan and I want to find someway to help other families affected by CHD (Congenital Heart Disease/Defects). I never thought I would appreciate Grand Rapids so much. We are two miles from the hospital. In fact, Dan's car battery died last week while we were visiting Louis and we walked home to get my car and jumper cables (excellent Christmas gift, Dad). We want to find a way to offer our extra bedrooms to out of town CHD families who travel to Helen DeVos Children's Hospital for corrective surgery. We aren't exactly sure how to do that yet but we're going to try. 

The doctors and nurses that provided Louis' care also provided emotional support to Dan and me through our toughest days. I don't know how we will ever express our gratitude. The only thing I can come up with is to pay it forward.