THE BLOG
11/10/2014 02:26 pm ET Updated Jan 10, 2015

The Long Ride With Wes

Ashbey Riley

My heart just exploded inside of my chest. I'm sitting half-crumpled in a chair and no matter how hard I try, I can't move. Not a muscle. The fact that I can still see and hear is the only indicator I have that I'm actually still alive.

The thing about having a baby in the NICU is that you never stop riding the emotional roller coaster. You're up and then down; it slows, but it never stops. You're not allowed to get off. On the downswing, you sweat and panic and desperately want the pain and anguish to end. You yearn for relief. But on that upswing, you could ride forever. It's euphoric and joy-filled and the love is downright overwhelming.

There are moments when you feel like your soul is being torn out of your body. You cry and beg and hold onto each other until the feeling passes and then it subsides and you wait to see what happens next. You sit side by side, raw and bleary-eyed.

You have good days where every report is slightly better, this level has decreased, this level has stabilized, we're weening this and looking better here. You cheer the little victories because they're like baby steps. Alone, they don't mean that much, but collect seven good blood gas readings and that's a trend. An awesome trend.

And then, when you're feeling optimistic, the pendulum will swing and you'll hear that while some things are improving, others are not. Or now there is a new issue.

There is a delicate balance; one drug to help with a level will create a lot of fluid which makes it hard for your baby to breathe. My husband calls it spinning plates. They all have to spin just right at the perfect speed or it's a disaster.

But the worst part, for me, is the waiting. The waiting to know anything. The dependence you have on other people to save your child. It's a helplessness that's agonizing. It will make you crazy. It will make you mad. But eventually, you'll give in because you realize that you control nothing. You are a spectator cheering on your fighter. Listening and learning but ultimately, all you can do is love your baby.

So touch him, stroke his forehead, hold his hand for hours. Talk to him and tell him stories, tell him where he comes from. Tell him you love him. Tell him that you believe in him.

Try to lose yourself in the good moments with him. No matter how fleeting.

Today was a mixture of all of the emotions. We were up and then down and then down further and then just now, less than an hour ago, I asked our nurse if she could lift the top of Wes's incubator and if we could give him a kiss and a smell.

And so she did and for the first time, we kissed our little boy. We breathed him in and put our faces to his. I pretended to eat his toes and kissed his feet for what felt like a thousand kisses. We felt an amount of joy that I may never ever be able to quantify. It was so pure and so magical that I could swear, my heart exploded.

And now I sit here, crumpled in this chair, unable to move from the massive amount of love that is coursing through body. I'm happy to stay on the ride for a little while longer today. I am still helpless but oh so grateful.