Monday, August 23, 2010

Heart Stories

Every Heart Has a Story

A fellow CHD mom I really admire, Stefenie, is hosting a special link-in party today, at her blog, When Life Hands You a Broken Heart....Create Hope.  She's inviting other heart moms and families to share their stories with each other.  

I've already written quite a bit about our experiences with congenital heart defects, trips to doctors' offices and hospitals, and the like.  Today, I want to share with you what it was like to receive our initial diagnoses:

We were expecting our third baby, a girl, when I had a life-altering experience.  I remember distinctly, how I stood in the kitchen, loading the dishwasher as the late summer sun streamed in through the window.  I could see my two children playing in the grass outside, and I thought about them as I gathered another stack of plates to rinse.  Remembering the chubby, good-natured babies they had been, I anticipated with pleasure what it would be like to take care of their soon-to-be born sibling.  It was at that exact moment that I received a message, unspoken by any voice, but distinct enough for me to know it wasn't my own thought or imagination.

"This baby will be different."

Startled, I let the plates drop into the sink, and leaned against the kitchen wall.  I could see my children tossing sand out of the sandbox they played in, hear a bird chirping through the open window, and feel my unborn baby kicking....but time seemed to have stopped.  I knew, right then, that "different" didn't mean my baby wouldn't be chubby or good-natured.  Different meant that something was wrong with my baby.  So I asked, "What is wrong with my baby?"

And the answer came.  "That doesn't matter right now."

I sank then, awkwardly, to my knees, and prayed, "Tell me what to do, please show me the way."  And I was given just a few tasks that should be done before my baby was born. 

I spent the next few weeks mourning the loss of "normal" and trying to come to terms with "different."  I cooked and cleaned and organized, just in case I would have to spend more time at the hospital with our new baby.  I shared my experience with my husband, and instead of reassuring me or blaming my fears on hormones, he quietly said, "I know," and we held each other and cried.

She came into the world along with the first snowfall of an early winter, more than four weeks ahead of her due date, and two weeks shy of a scheduled c-section.  As the labor pains started and increased in frequency, I told myself, "It's just that she's going to be early.  That's it, she might be a little smaller than the others, maybe harder to feed."  Despite the reality of my early warnings, I hoped for a less dramatic outcome than the ones I wondered about late at night.

When the doctor pulled out our new baby, my husband and I braced ourselves.  But the sweet baby who was placed in my arms--though a little smaller than her older siblings had been--was perfect.  The prettiest newborn we'd had yet, she curled up into my arms and nursed with little difficulty the first time.  Keeping her in the room with us that first night, my husband and I kept looking at her, marveling at her miniature fingers and sweet rosebud mouth. 

Days and weeks and months passed.  On the surface, there was nothing extraordinarily different about the newest member of the family.  There were small differences in behavior and feeding that I attributed to her being her own little person: she was a little harder to nurse, she took shorter but more frequent naps, she stayed petite and didn't get the rolls and dimples of her older siblings.  But still, I was nagged by the knowledge that something just wasn't right.  At each well-child visit, I would question the doctor about her weight gain, her feeding habits, the funny way she arched her back sometimes....only to be reassured that she was fine. 

Until her nine-month well child visit.  This time, the doctor shook his head as he looked at her chart.  Superkid hadn't gained any weight since her six month check up.  This time, the doctor listened very carefully to Superkid's heart with his stethoscope.  For long minutes, we sat quietly, as he listened.  "I'm not sure if I'm hearing it right, but I think I hear a little murmer, there," the doctor told me at last.  "It's probably nothing, but I like to be cautious with things like this.  Let's have a cardiologist look at her."

Strangely, instead of being alarmed, I felt relieved.  I knew the long wait to find out what was wrong with our baby was almost over.  When we sat down to get the results of the echocardiogram from the pediatric cardiologist, it was like having the curtains opened to bring sunlight into a darkened room.  Did we like the room we saw?  Not particularly, but finally knowing what we were dealing with and being able to get up and move around was better than sitting in the dark.  Mitral valve stenosis, a congenital heart defect, was what made Superkid different.

Things happened very quickly from that point.  We went from having no diagnosis to experiencing symptoms of severe heart failure in less than one month.  Superkid was desperately ill and in need of heart surgery within three months.  We spent most of those three months in the hospital.  The answer to all of the questions you might ask sympathetically--was it awful?  were you terrified?  wasn't that exhausting? --is yes.  It was all those things, and then some.  But it was not surprising, and it was not something we weren't prepared for.

I believe that God recognized that I would need some time to digest and accept the idea that this baby would be different in a way that would challenge our whole family--not just once, but many times and many ways.  I am incredibly grateful for a loving Heavenly Father who gave me, His daughter, a gift of time and preparation.  "Before I formed thee in the belly, I knew thee; and before thou camest forth out of the womb I sanctified thee..." (Jeremiah 1:5). 

Is my experience unique?  Perhaps.  Many of the heart parents I know were caught off guard by their child's diagnosis.  I am convinced, however, that the parents of children with special needs are prepared in some way to take care of their children.  They have something that only they can give, a contribution that only they can give, and that is why God entrusted them with the care of a "different" child. 

To those who are just beginning their own journey into a new world of diagnoses and doctors and hospitals and long nights willing the heart monitor to just keep beeping.....then I offer you these words of encouragement:  Trust yourself, that you have it in you to develop the skills you need to parent this child.  Trust in a loving Heavenly Father, that He has already shaped and prepared your for what is ahead, and that he will answer all your prayers--even the ones you don't know how to say, yet.

If you would like to read about the diagnosis of our second heart baby/fourth child, or find out more about our experiences with Superkid and ongoing medical issues, click on any of the following links.


  1. Ruth,
    I am once again in awe of your amazing words on this unexpected journey. Funny how I too had this tingling feeling the entire time I was pregnant that something wasn't right with my baby. I totally shrugged it off just like you when he was born completely healthy. However two weeks later we learned different. I still can't believe that Superkid went nine months undiagnosed. I am so glad that God held your precious child in His arms during that time.

    Thanks for sharing your story and for joining in the blog event!

  2. I just recently began following you and I am going to learn this story bits at a time because I want to learn it slowly.

    I think you are right - God does prepare those who deal with these difficulties.

  3. You are so right...God does prepare us and He truly shows us the way. It amazes me that you didn't know for 9 months...kind of scares me too. Thank you for sharing your story and I hope you don't mind me adding you to my blog list. I will keep Superkid in my thoughts and prayers.