Mother of a Broken Heart

Yesterday, my 4-year-old and I went to an appointment with her cardiologist.

Now, if a 4-year-old has a cardiologist, then you know something rather craptastic happened at some point. For reference, here’s a summary of our crapisode:

Heart EKG painting photo by Leo Reynold

When our first daughter was 2 weeks old, she screamed all the time. She had a hard time eating, and then she started breathing really rapidly. She also looked pretty pale, but we are very white, Casper-esque people ourselves so maybe it was normal…? Being first-time parents, it was impossible to know which things were normal crazy baby things, and which things we should flip out about. Being the judicious people we are, we went ahead and had a tiny bit of panic about most everything.

When the breathing thing started though, we asked ourselves, “Is this crazy crazy, or normal crazy?” Having received no answers from each other’s blank, sleep-deprived stares, we called the advice nurse.

After a couple of “it’s probably fine,” phone conversations, we still weren’t totally convinced and my husband decided he would feel better about going back to work if we had someone look at her again. So in we went.

Enter the Life-Threatening Holy Moses Circus, starring our 15-day-old baby.

Nurses and doctors and EMTs materialized in the exam room. I heard a call to the ambulance. A nurse prodded my daughter’s head with a gigantic needle, commenting, “This looks scary, but it’s okay.” Then they smothered her face with a bag of ice noting again that it looked scary, but it was okay. Somewhere between that, the crash cart, the intubation, the swollen liver, and the blood transfusion I got the distinct feeling that things were not, in fact, okay. We had left the realm of normal crazy, and landed squarely in the vast terrain of crazy crazy.

The next few days were spent with nurses monitoring and logging our daughter’s frequent episodes of tachycardia, while a bunch of doctors tried to figure out why the heck she was having them in the first place. About the fourth day, they figured out that she has an accessory pathway in her heart, which was throwing it off, and rocketing her heart rate to 230+. The fifth and sixth days were spent finding the right cocktail of medications to help her heart regulate and regain strength, and help her body get rid of the extra fluid that had built up under all that stress.

On the eighth of some of the longest days of my life, we were sent home with three bottles of medicinal magic, thus ending the tour of the Life-Threatening Holy Moses Circus. We were not sad to see it go. We administered a slightly complicated schedule of elixirs for six months, and then it was like it never even happened. No medication. No heart beating straight out of a tiny chest. No Significantly less panic.

What do I want to say about all of this anyway?

As I read “Normal,” on the EKG printout, and heard her doctor say to himself, “Perfect,” and, “Strong,” as he listened to her heart, I knew I wanted to write something about this whole wild thing we experienced. But what?

I could talk about how the NICU is strangely frightening and comforting and lonely and communal all at the same time. About how all the parents share fears and hopes and unspoken sadness. How you see parents go home with their babies and you feel such happiness for them, along with a deep pang of jealousy. How you scrub your arms, up to the elbows, for the full three minutes every time you enter the room because each baby feels like the thinnest glass, and you don’t want whatever germs you carry to be the thing that shatters them. How NICU nurses are pure gifts. How when you hear those NICU nurses held your baby in the middle of the night, you want to weep because it wasn’t you.

I could talk about exactly how devastating it is to get a rejection letter from an insurance company while your baby is intubated and unconscious from the morphine, because she—at 15 freaking days old—has a “pre-existing condition.” About how pre-existing conditions are absolute bullshit, and if eliminating their use by insurance companies is all the Affordable Care Act does successfully, it’s still a huge win for all of us. How insurance premiums, and co-pays, and exorbitant charges feel like ransoms when you realize you’ll pay any amount of money to see your kid live another day. And how that—that is just plain immoral.

I could talk about how the gratitude that lives in my bones, in my heart, and in my soul doesn’t keep me—on those normal crazy days that are unbelievably hard—from wanting to run from my family and live in a small wooden cabin in Canada.

I think what I really want to say, though, is that I love her. I love her, I love her, I love her. And her perfect, strong, normal heart brings me to my knees with joy. She is precious, and sacred, and funny, and crazy, and I love her.

Holy Moses.

 

Photo credit Leo Reynold at FlickrCC-BY-NC-SA 2.0
About these ads
Leave a comment

8 Comments

  1. The words “pre-existing condition” in this post leave me feeling a visceral rage. And yet . . . and yet, even greater than that, my heart is full from the goodness of your conclusion.

    Like

    Reply
  2. Starr

     /  June 18, 2014

    I remember when all that crappy-crappiness went down and how frightening it was for you. It’s awesome to hear that her heart sounds “strong” today. She is such an amazing little girl. Xoxo

    Like

    Reply
  3. Cassie

     /  June 18, 2014

    Oh Melanie!! How could I have forgotten that all this happened! It all disappeared so fully, I just…forgot. Of course I’m in tears reading this. So much MORE empathy I’m capable of thanks to my new reality of leaping out of bed in terror in the middle of the night if my 3 week old hasn’t cried in more than a few hours. Every day feels like grace, knowing how fragile these little babes are. Your story gives me courage to trust my instincts even when they contradict the docs…thank you for sharing. Every word of your little essay is perfect.

    Like

    Reply
  4. jerrodkc74

     /  June 18, 2014

    I understand this post like it were my own. You know how I feel about your words and I feel blessed I get to read them.

    High five.

    Like

    Reply
  5. My daughter has had her share of being in the hospital for different things, from injuries to fevers that had her motionless in her crib as an infant, but what you went through waiting at the hospital for answers? I can’t begin to imagine what that was like :O

    Like

    Reply

Leave a Comment

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: