Emmy's Story: What the Heart Can Withstand

 This is Emmy today.

This was Emmy over two and a half years ago after her heart surgery.

Nothing is like a mother's instinct.

When Em was almost four months old she was fussy and I had a  feeling something wasn't quite right.  Everyone told me she was fine.  It was just teething, they said.  It was the week before the holidays and I didn't want to take a chance something was wrong.

The doctor noticed the heart murmur that she had heard when she was there for her one month checkup.  Then, she had told us not to worry about it.  It would probably go away on its own.  It was now louder .  Much louder.  She seemed almost nonchalant about it.  In hindsight, she probably didn't want to cause us to panic.  We were told to make an appointment with a cardiologist and try to get in when they had an opening.  I called that day.  They could only see us, new patients, in March. Could Emmy wait that long? 

I called the pediatrician back the next day and left a message if it was okay that she wasn't seen by a cardiologist until then.  Since the local center where the local pediatric cardiologists were located was closed for the holidays, the doctor didn't reach them to discuss Emmy's case until after the New Year had begun.  The day after our pediatrician and their cardiologist spoke, she was seen.

That Christmas we could pretend nothing was wrong.  Emmy seemed fine.  Her case of fussiness had dissipated and everyone chalked it up to new mom worries and even teased me about it.  I really do believe it was just teething but sometimes I wonder if it was part mother's instinct and part divine intervention that day I took her to the doctor's office. There was a niggling fear in the back of my mind during that time that bad things were coming our way.

We survived it though.  I can tell you that from the time we left that cardiologists office to the next morning when Emmy underwent heart surgery were the darkest hours of my life.  Just writing that is making me cry and my throat is tightening so much I can barely swallow.  The fear that you may loose your child is like having your heart ripped from your chest without anesthesia and looking into a black void. Looking back, I honestly don't know how I got through it other then through leaning on my husband and faith-faith that she would be okay because God had special plans for her.  We didn't want Emmy to be scared so we couldn't let ourselves succomb to the fear that we felt.

You can read more about Em's coarctation and heart surgery* and the amazing people we met through the children's hospital where she had her surgery and the Ronald McDonald House. The nurses and doctors cared for our daughter as though she was their own. Their assurances, words, and quiet confidence also gave us an appreciation for how lucky we were to have them.  They also gave us a new persepctive.  Not all of the children they see get to leave the hospital healthy just days after arriving. In fact, she was released on a Sunday.  Her surgery took place on Friday.

Even though Em is a regular three year old with a huge smile who runs and plays and is completely fine, she still needs to see a cardiologist once a year just to make sure that the coarctation is not returning.

Two years and eight months after our lives were forever changed, Em had her yearly checkup.

Every year as I sit in that office,  I go back to that place where the sky opened and I wasn't sure it would ever clear again. 

Em has no fear of doctors.  She doesn't cry when she gets shots. She laughs at the pictures on the wall in the doctors office and points out how silly they are (and slightly inappropriate which I am glad she is still to young to comprehend).

This was on the wall of the exam room.  Yes, this is Michael Bedard's "Sitting Duck" and yes those are bullet holes in the wall.  Emmy remarked about how silly it was since "ducks don't wear sunglasses, Mommy".  I am thankful of her innocence.

She sat so patiently as the nurse put the stickers on her little body to hook up to wires for the one test and even pulled them off herself when they were done.  While they checked her blood pressure, she sat so still. She even strained her neck to see the pictures of her heart on the screen and was curious about the baby in the doctor's belly.

I worried about meeting Em's new doctor.  When we got the letter from her old cardiologist saying she felt her calling was to give up her practice to become a missionary and to treat those who were not as fortunate, I was proud of Emmy's doctor but also worried.  She was the one who had found the problem with Emmy's heart and coaxed us through the process of getting our daughter the help she needed. She was the one who we had a connection with since we had literally put our daughter's life in her hands.  Would the new doctor be as good?  Would Emmy like her?

She is wonderful and Emmy's heart is just fine.  It beats its rhythm as she dances to the radio and it is big enough for all the love it can hold. Yes, it is just fine.  We don't often talk of it because Emmy is not defined by the surgery she had and she can do anything her heart desires. We also don't want to scare her.  She knows she had heart surgery but she also knows she is healthy and loved.

It reminds me to never doubt that I know what is best for my daughter.  I am in her corner.  Those brief moments also reminded me that I need to cherish today.  Not tomorrow, not yesterday but today. 

What will we do if her coarctation returns?  Will we be able to handle it?

We will.  She will.  The heart can withstand whatever life throws its way.

We have family. We have friends. We have our faith.  We have each other.

*The story begins at the third paragraph of this particular post.