Charlie's Heart

I have been mulling over how to write this post. Partly because I wasn't even sure how to feel.

But we are starting to get our bearings, and here I am.

The day after Charlie was born, the resident Pediatrician came into our room during his morning rounds.  He let us know that he detected what he thought might be a heart murmur.  He ordered an echo cardiogram just to be sure.  You know, routine...no big deal.  Being concerned, I spoke with the nurse after he left, and she dealt with it the same way.  Babies have heart murmurs all the time.  Most are non-life threatening.  Some heal on their own.

I have a tendency to over-think things...to worry too soon...to churn over and over in my mind, all the possibilities, preparing myself for the worst-case scenario.  It's a coping mechanism.  I figure if I can prepare myself for the worst, than anything other than that is better and easier to handle.  In theory, it works.  In the life of a parent - it can cause ulcers.  I have been trying really hard not to think the worst.  Trace tells me I worry too much, and until I get all the information, worrying causes undue fear and angst.

Trace was gone getting breakfast with Aleana when the Dr spoke with me.  So when he returned, I told him what the Dr had explained and what needed to happen.  Again, no big deal.  I was too tired, and drugged up to allow myself to think further into the worst-case scenario department.  I told myself not to freak out and that was that.  I know of a few friends that do have heart murmurs, and they live normal, relatively healthy lives.  We'd be okay.  Charlie is fine.  Trace's reaction was the same as mine.  Let's just wait and see what the ultrasound reveals, and then we'd go from there.

The time came, and I accompanied Charlie for her echo.  They spent about an hour gathering images of her heart.  I may not be educated in what to look for in ultrasound images, but even I could tell something was not right.  I could hear the murmur in the sound bites that they pulled.  It was prevalent, even to an untrained ear like mine.  And even though the technicians are supposed to keep a straight face, their exchanged glances gave it away.

Something was wrong.

I sat there in a wheel chair, trying to keep Charlie content, and trying to keep my nausea at bay.  This was too much...I am just doing what I normally do...I am simply reading too much into this.  I will not freak out.  Charlie is okay...

When I returned to the room with Charlie, Trace and Aleana were waiting for me.  He asked how it went, and I said fine...no need to worry.  The nurse told us we'd get the results sometime in the afternoon.  The radiologist needed to look at it.

So we waited.

With a knock on the door, in walked yet another Dr carrying a piece of paper.  I assumed it was just the next pediatrician on-call making the afternoon rounds.  Trace and Aleana were sitting on the cot in the room, Trace holding Charlie.  Aleana and Trace were watching a movie on the laptop, trying to keep the room quiet.  My head was spinning with the narcotics swimming in my system and the soreness that accompanies a c-section.

Then the Dr pulls up a chair.

He starts speaking and showing us the hand drawn diagram of Charlie's heart.  Trace and I exchange glances.  He hands Charlie to Aleana.  Poor Aleana, not sure what to do or think.

Trace comes and sits at my bedside and grabs my hand.  Our newborn world comes to a screeching halt.  The nausea returns, and so do tears.

Charlie does indeed have a heart murmur - a ventricular septal defect (VSD).  It is a hole between her right and left ventricle.  It is too large to heal on its own.  And too large to ignore.  But there is more.  She has what is called Tetralogy of Fallot.  Her right ventricle is enlarged, and her her pulmonary valve is narrowed.  A congenital heart defect that occurred at 8 weeks of development.  She will need open-heart surgery...within 3-6 months.

Dr. Womack said a whole lot of other things.  Gave us advice on how to handle the news, and how to deal with Charlie.  He answered all our questions.  I remember bits and pieces, but honestly I think most of it went in one ear and out the other.

My baby was sick.

Fear.  It's the only word I can think of to describe what we felt.  As it should, I was shaken to the core.  How can I protect Charlie?  How is this happening?  My perfect baby girl - the one we fought so hard to let grow big and strong needs help.  This little beautiful angel with my chubby cheeks and her daddy's blond hair already has a tough road ahead of her.

And I can't change that. I am not in control.

The news was overwhelming.  Immediate concerns of how to take care of her and what symptoms to look for came to the forefront.  What can we do to help her?  The resident pediatricians and nurses wanted to come listen to her heart.  I guess it isn't as common to have a baby in the regular nursery, not NICU, with this congenital heart defect.  From the outside she is perfectly healthy.  She scored high on her apgar test.  She's pink and breathing just fine.

For a time, there was a slight concern that Charlie might have DiGeorge Syndrome (a  22 chromosomal genetic deletion, not mutation), as Tetralogy of Fallot is more common with babies that have DiGeorge Syndrome, and Down Syndrome as well.  But her genetic testing has since come back negative for DiGeorge and 85% of it's variants.  And she is developing right on schedule.

It took me three weeks to speak of Charlie's condition without crying.

It also took me three weeks to realize, or should I say, remember what I should have known to begin with...

1. The Lord is in control.  In the wise words of my mom, He has carried Charlie in His hands this far, and isn't going to stop now.  And if I take the time, I can see his hand in this pregnancy time and time again. Charlie is meant to be here.  She is meant to be with us.

2. Putting trust where trust needs to be.  Firstly, the Lord.  I know it's okay to be scared, the unknown always is...but I can feel the reassuring comfort that only the Lord can bring.  Secondly, putting trust in the Drs and surgeons that will take care of Charlie...the drs that are seeing her right now have been amazing so far.  As a mom, I am limited as to what I can do for her heart.  I am grateful that there are those who know and have the expertise to take care of her.

3. This is our reality.  It's not going to go away if I don't think or speak about it.  It's something we have to face...Charlie is a fighter and she can do this.  She has been preparing for this.  She, in comparison to the rest of my pregnancies, has been the strongest mover and shaker by far.  We started calling her our Ninja girl early on...and it suits her more now than ever.

4. Charlie has become our strength.  Watching her grow and gain weight and seeing her eyes twinkle are inspiring.  She has such a strong spirit.  We love her and are blessed to have her in our family.  She is adored by all of us.

5.  Prayer is everything...from our pleadings with the Lord to others on Charlie's behalf.  We can feel His healing power.  We can feel that quiet peace that can't come from anywhere else.

6. The priesthood.  Being able to be blessed by the power of the priesthood, knowing that miracles happen, is reassuring.  The Lord is aware of Charlie.  He is aware of us.  We are not alone.


Having had a month to digest what is happening, and what will have to happen with Charlie has been long.  And scary.  And testimony building.  I know Charlie's condition isn't the end of the world.  I know it could be much worse.  I know that there are new parents out there that get worse news than ours everyday.  I know we are blessed. I know we can't do this alone, and it was never meant to be that way.

It has changed our family dynamics.  Sitting back and watching Trace, and how he has to not only deal with Charlie, but with me and my recovery, as well as the other kids and how they have to adjust is amazing.  And then having to go to work on top of everything...I am not sure how he has been able to hold it all together.  I know I have been a mess, and could not function without him.  His hugs and his silence, while he lets me cry in his arms when it all gets to be too much, (which, if I am being honest, is almost a daily occurrence)...he has been my rock.  I am used to being strong, and right now I can't be.  Knowing that I have him to lean on is everything to me.  Knowing that he is in Charlie's corner fighting for her, with a father's love is something to see.  I am so glad I married this man.  I am blessed to share 5 beautiful children with him.

We scared.  We are blessed. We are grateful.

And we have a beautiful ninja girl named Charlie.