How do you hand your child over for surgery?

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There’s only one answer to that question: you do it because you must. Nobody wants to kiss their child’s head and watch them fall under sedation. Nobody wants to leave the OR wondering whether they’ll ever see their child alive again. I’ve done it four times with Corey. I hope I never have to do it again.

Corey had the B-T shunt surgery as an emergency on March 9, 2005. He was barely two weeks old. Just a little tiny baby. And he seemed fine. But the home pulse oximeter told a different tale. Corey’s oxygen saturation levels were in the toilet. We checked him in through the ER at Johns Hopkins, and he had his first surgery.

We were a terrified sobbing disastrous mess before the surgery. I bit all my fingernails off during the surgery. And then Corey showed us what a little spitfire he is. He fought his way through the surgery with no complications. Corey came home on March 15, 2005 after a short textbook recovery. He was one tiny being with so much strength and personality. He still is.

Getting Published

Let’s take a brief break from Corey’s CHD timeline to talk about getting my book published. I’m still reading the book on publishing, and I am nearly finished writing my proposal. The proposal will go out to some small publishers rather than an agent, and then I will start doing the “please like my book!” dance. Maybe I’ll take video of these dorky dance moves. In the meantime, here are the elements of the proposal: 

  • Table of contents

  • Overview

  • Bio

  • Audience

  • Competition

  • Special Marketing and Promotional Opportunities

  • Manuscript Specifications

  • Outline

  • Sample Chapters

Are you asleep yet? Me too. What I’m really struggling with is how to interject some levity into the proposal. Here, on the blog, it’s easy to be silly. I’m writing for people who get my idiocy. But here’s the rub – many authors approach a proposal like a term paper. They only concern themselves with the facts. Well, that’s not going to grab attention and sell a book. That’s going to get you into the slush pile.

So, in my proposal, how do I go from, “Well, my child has a life-threatening condition and here’s what it’s like to live with that!” to making anybody laugh? Am I just going to roll with a tone of deep seriousness? The book is written in first person. The proposal is therefore also written in the first person to allow my voice to come through. Fine, but only my dire voice is coming through, and that’s no good. Where is the space for a “top 10 list” in the proposal? Ack! 

Suggestions are welcome…..

Baby Comes Home!

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Continuing with my recreation of Corey’s CHD timeline……

On February 23, 2005 Corey had his very first procedure. He hadn’t even been on the planet as an independent being for one day when the first invasive intervention was necessary. A balloon atrial septostomy. In other words, the doctor widened one of the holes in Corey’s heart to allow blood to shunt more effectively. It happened right in the NICU with a crowd of doctors and medical students watching. We, his parents, were not there.

On February 27, 2005, we were discharged from the hospital, and Corey came home for the first time. I thought the doctor was joking when he said we could leave. It had taken an entire staff of doctors to keep Corey alive this long, who the hell were we to be able to keep him alive in our house with zero medical training for even five minutes? And we were rookie parents! At this point in my life I’d managed to keep a healthy cat alive for seven years, but all the goldfish and plants – dead. Dead as doornails. I was convinced we were in trouble. It was terrifying.

But we managed. Despite the fact that Corey came home in heart failure, on several medications, we managed. Corey also came home with a home pulse oximeter, and we used that sucker religiously. And it’s a good thing we did. Because one night his oxygen-saturation levels plummeted, and we found ourselves right back at Hopkins for the emergency B-T shunt surgery.

I’m thankful that we had a short time to bond with our baby at home, despite the fear. It was nice to hold him, touch his face, count his little fingers and toes, and love him without all the beeping medical equipment, bright lights and bustling staff of our hospital stay. The time was brief, but it was precious.

Birth…..and off to the NICU

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I’ve never heard a boring birth story. Have you? There’s nothing boring about bringing a new life into the world. Corey’s birth was no exception.

February 22, 2005. My water broke before 5 AM. I woke my husband up and said, “My water broke.” He yelled, “What?  What?” He’d been forced to wear earplugs for my entire third trimester to deal with my freight-train snoring. He pulled out the earplugs and I repeated myself. He was out of the house like a shot – it was a sitcom. He nearly forgot me.

The good thing about going into labor in the wee hours of the morning was the traffic. There wasn’t any. We arrived at Hopkins in no time flat. The next sixteen hours brought a parade of doctors, nurses, technicians, students, and every other Tom, Dick and Harry on-call that day into my room. Everybody wanted to see the birth of the heart child. I think the janitor even wandered in at one point. This is why I no longer have any shame.

Alas, despite the extensive number of cheerleaders on my team, labor didn’t work. Corey was sunny side up, refusing to budge, and his heart rate was dropping. An emergency Cesarean section followed. Corey broke into the world wailing like a banshee with all his will to live. The anesthesiologist said, “That’s the healthiest looking baby I’ve ever seen.” And he did look perfect. And pink. Would we have discovered his CHD in time had he not been diagnosed in utero? That’s a thought that haunts me.

I was only afforded a brief glimpse of my squalling baby before he was whisked off to the NICU. Then I had to wait until he was settled and the effects of the anesthesia wore off before they would let me visit him. I waited. And waited. I wanted to sleep desperately. My body was ravaged by the labor and then the emergency surgery. But I did not dare. I didn’t know if Corey would live to see his second day, and I could not risk losing him without ever having touched him, without telling him how much I loved him. And so I waited.

In the middle of the night, they finally came to get me. I couldn’t walk, so they wheeled me to the NICU. And then I finally had the chance to introduce myself to my son. To put my hand on his tiny chest and tell him that I was there and that I loved him. And then I slept.

Corey had his first procedure the next day.

A Second Opinion

I used to go to the doctor and just accept whatever he (or she) said. Particularly if the doctor was a specialist. Who was I to question this person with advanced degrees? Who was I to question the tests he proposed, the results, his diagnosis, or even the color of his pants? If you were in a white coat, I was going to accept anything you had to say as the absolute truth.

Thankfully, on October 15, 2004, when the perinatologist handed down Corey’s grim diagnosis, I didn’t choose blind acceptance of the man in the white coat. Instead, we chose to get a second opinion. 

Continuing down Corey’s CHD timeline, the next important date is October 20, 2004. Between October 15th and that date, it was an agonizingly long wait in a fog of fear and sadness. We had all but given up hope that our child would survive. At one point I even hoped the amnio would cause a miscarriage so that I wouldn’t be forced to make the impossible decision between termination and compassionate care. There’s never been a lower point in my life.

Finally, we went to see a pediatric cardiologist (PC) at The University of Maryland in Baltimore on October 20th. I had another fetal echocardiogram. It felt almost pointless. We expected confirmation of the perinatologist’s diagnosis. We were just going through the motions. I remember lying on the table, flat on my back, thinking, “Women as pregnant as I am shouldn’t be flat on their backs.” But my next thought was, “I guess it doesn’t matter.” Still, we needed to be certain we’d done all we could before we made our impossible choice.

That’s why we were shocked and confused when the PC told us a completely different tale than the perinatologist. He said that our son had tricuspid atresia, and while it is a major congenital heart defect, there was every reason to hope. He said it would be a difficult road, but there was another option. A three-stage reconstructive surgical pathway. When we objected and told him what the perinatologist had said, he replied, “Well that guy’s an idiot.”

We were more confused than ever. Did we dare to have hope? We had two completely opposite opinions. From two specialists. How could they differ so much? What were we supposed to do now?

We sought a third opinion. A tie breaker. On October 25, 2004, we went to Johns Hopkins, had yet another fetal echo, and consulted with another group of PCs. The PCs all concurred. We had a chance. Our son had a chance at life. 

We met with the surgeon, and he explained the details of the surgical pathway. When we were nearly finished with the appointment, and our heads were swimming with all the information we’d been given, I asked the surgeon point blank, “If this was your child, would you bring him into the world?” He said, “Yes.” That cinched it for me. We were going to get in the fight and give Corey a chance.

I will never, ever, undervalue the importance of a second opinion again.

The Beginning

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Every parent remembers the moment they found out their first baby was on the way.  It’s one of those moments in life that comes back with spectacular clarity.  Vivid details.  Where you were, who you were with, how you felt, maybe even what you were wearing.  There’s nothing quite like that moment.  Your life changes forever in an instant, and it’s not even a cliche, it’s just a fact.  Whatever happens after that moment – joy or tragedy, and everything in between – that moment is forever.  

This picture represents the moments after I took a pregnancy test in 2004 and discovered that I was pregnant with my first child.  It absolutely tops the list of happiest moments in my life.  I was ready to be a mother by then – more than ready, I was itching for the chance to hold a baby of my own.  To snuggle a sweet little chubby-cheeked bundle of joy, to hear that pitter-patter of little feet, to see the wonder in my child’s eyes when he or she got to try trick-or-treating for the first time, to see that innocent face on Christmas morning beholding all the wonderful presents under the tree.  That moment was a dream come true.  

That was the beginning of Corey’s story.  Now I’m going to walk through each of the points on Corey’s congenital heart defect (CHD) timeline, beginning with the first moment, his CHD diagnosis.  (Please see the link on the home page for the complete timeline, or click here: https://jenniferannefleming.wordpress.com/coreys-chd-timeline/).

The next moment of my pregnancy that stands out in my mind with absolute clarity was the opposite of joyful.  It was devastating.  October 15, 2004.  That was the date that Corey was diagnosed with a major congenital heart defect.  The end of our dreams of a healthy baby.  I remember where I was, who I was with, what I was wearing.  I thought I’d felt pain and fear in my life before that moment.  I was wrong.  There never was pain or fear before that instant.  

Corey’s heart defect was discovered during our routine 20-week ultrasound.  I woke up that morning full of joy.  All I could think about was learning the gender of my baby.  And I did.  I learned that I would have the son I always dreamed of.  But then I learned that something was wrong with his heart.  We would need more tests to determine exactly what the problem was.  My OB was blunt.  My unborn baby might be a candidate for treatment.  Or he might die.

We were referred to the hospital at University of Maryland in Baltimore, and we went immediately, that same day.  We met with a perinatologist.  I had more tests.  I felt terrified, and I had to spend all my energy concentrating on not falling apart.  I needed to get through the tests.  I had to know what would come next.

The news was worse than we expected.  The perinatologist (incorrectly) diagnosed Corey with Double Inlet Left Ventricle.  It is a single ventricle defect, and Corey does have a single ventricle defect, but we would not receive the correct diagnosis of tricuspid atresia for many more days.  The picture painted by the perinatologist was horrifying.  He led us to believe that, should I continue with my pregnancy, my child would be born only to suffer and die.  He offered us termination on the spot.  I considered it.  How could I bring a baby into the world and force him to suffer and then watch him die?  

For a few moments that day, I felt like there was no air.  Either I would kill my child willfully – this child that I had wanted so desperately for as long as I could remember, this child who was named, who had fingers and toes, who was blood of my blood and bone of my bone, this person I loved already like no other – or I would carry him and carry my sorrow, give birth to him, and bring him home with me, where I would count his fingers and toes, fall more in love with him, and then I would watch him die.  Termination or compassionate care.  Is there a more soul-crushing decision a person can make?

The only other option was “get more information.”  When the perinatologist threw that on the table, we grabbed onto it like a life line.  I had next to no hope, but I could not make a life or death decision that day.  I could not do it.  Neither could my husband.

That choice led to immediate amniocentesis in order to do complete genetic testing on Corey.  The doctor told us that, should the tests return any kind of genetic abnormality, the outcome was likely to be death.  And he said it with no compassion.  He saw a burden on society in Corey.  He didn’t see the A student who plays baseball.  I hate him for that.

And then we waited.  In a fog of fear, we waited.  It would be days before we got that information.  Days before we found reason to hope again.  

We waited.

FREE!

Did that get your attention?  The book I’m reading on publishing a book suggests that certain words will draw attention on the web.  “FREE” in all caps in one of these words. Apparently if you scream this word at people, the masses will come flocking.  Who knew? The book also suggests that smart people will read media about themselves, so I should feel FREE to refer to giants of the writing world.  To this I say, “Hey!  STEPHEN KING!  Your name is in my blog post!”  Think that’ll work?

Okay, me neither.  But I do plan to just randomly pepper my future posts with these attention-grabbing words, even if they turn my otherwise semi-coherent posts into gibberish.  And tags too.  I’m supposed to use tags to increase traffic to my blog.  Look out for random tags!

By the way, I FREE added some new fodder to the STEPHEN KING front of my blog.  You can now find helpful FREE information in the “About Jennifer,” “CHD Links,” and “Corey’s CHD Timeline” sections.  Hey, FREE kind of worked there.  So STEPHEN KING, how do you like them apples?