July 29, 2010


 {pictures courtesy of my budding photographer son}

My heart has been full of joy and at the same time worry.  Joys for the wonderful blessings in my life and worry of all the things I want to do so I can live my life without regret.  My mind is filled with jumbled thoughts, plans, projects, and goals.  I am sure like many moms, I struggle to maintain balance.

Alexa had a cardiology appointment on Friday, July 16th.  It was mostly for a pacemaker check.  Since giving birth to my last little bundle I have been working on getting rid of those last pregnancy pounds.  They were a stubborn bunch!  After some relative calm set in after her surgery, every time Alexa went for a heart appointment I would make a new resolution to have lost X amount of weight by the next visit. I would lose a couple here and there but for the first time, I finally met my goal and lost TEN pounds!  I was so excited to be going in as new thinner me.  Although I felt kind of guilty of being excited about going to the doctor since the reason is a heavy one ~ to check on the health of my beautiful young daughter's heart ~ the truth I was excited to show off the new improved me and to have  finally have accomplished this goal!  

The good news is that the pacemaker is working great as is Alexa's sweet heart. I asked Dr. P about the underlying beating her heart began doing on it's own, reflected in the last visit.  The one that had given both us some hope and assurance as a back up plan in case of emergency to the pacemaker.  He looked at me quietly for a few seconds and then shook his head from side to side and said gently ...  "It's gone."

As he said this, my eyes began to immediately well up with tears.  My excitement about the visit quickly disappeared like a puddle of water on hot summer day.  The reality of her condition again a dagger in my heart.  I was trying to contain the tears to my eye sockets but they spilled out like overflowing dams.  I could not contain my sadness.  All I could muster to ask is "why?"  I could sense his sympathy for me.  He explained that just as a muscle in a cast gets atrophied the same is true with those underlying little heart beats her heart had begun originating on it's own, now since the pacemaker was doing all the work those little electrical pulses decided they didn't need to put forth any effort since the pacemaker was pacing her ventricles 100% of the time.

He tried to make me feel better saying they see lot's of kids with pacemakers that have no issues.  Life with a pacemaker can be as normal as can be.  Through a crackling voice I mustered, "Well I still don't completely understand all the functions of the pacemaker."  I here a lot of lingo involving the pacemaker that seems so much harder to wrap my brain around.  When I was trying to learn the structure of the heart, the various defects and what they meant as well as the repairs of the operation Alexa needed there was a steep learning curve but I did it.  I understood.  This I felt like I would maybe never understand.  And maybe I didn't need to.  But my crazy brain is like that, it's likes to know the why and how of things.    

This is ELECTROPHYSIOLOGY, however.  I guess I could/should cut myself some slack.  I found out there are only 150 Electrophysiologist in the whole country - I could not certainly come to a complete understanding of what less than a minuscule part of the population understood.  Dr. P quickly glanced at his watch as to make sure he had enough time and said he felt if I understood the functions I would probably feel better about the situation.  It was not his first time explaining, he's done it many times.  But remember - I had a hard time w r a p p i n g my brain around it.  So he closed her chart grabbed a paper and began drawing.

He said that the pacemaker is a very sophisticated device with many capabilities.  But in Alexa's case it was working very simply with only one function as her damaged AV Node.  He said it was functioning like an egg timer set with a very low time limit counting mili seconds, if no heart beat was produced by her ventricle it would produce a beat and reset.  That's the short version of it folks.   Don't feel like typing out all the details but  I will be posting the a picture of the drawing so in case I lose the original I can refer back to it here.  My main concern, is that with a fearless toddler, the pacemaker wire will disconnect.  Then what?! That's my fear.  Alexa likes to run on the sofa.  Yes, the sofa.  I stop her but she thinks it's funny and fun.  I tell her sit down and she sits for two seconds and as soon as I turn she stands right back up and tries to run around or jump.  It is my fear when I wash her hands and push against her belly or she climbs out of the kid play pool and rubs the pacemaker against something hard ... it's just my fear.  The doc said it would take A LOT to make it come undone.  Like a hard blow to the abdomen or constant pressure on it like a kid twirling around on a jungle gym etc.  We talked about having a second lead placed as a back up, insurance/assurance, he said some parents insisted on it, others did not.  It would take another surgery so of course I would not put her through that now but in the future we will discuss it.  Dr. P is caring and nice.  I did feel better.  Although I cried I felt peace and a sense that Alexa would be all right.   So I left feeling grateful for the good.


  1. Oh I'm so so sorry that you had that disappointing news :( Sending a hug.
    Alexa looks like she's gotten so big in just the past few months and she is just such a doll. Your family is beautiful!

  2. Michelle,
    {{{{{{{{HUG}}}}}}}}} Wow I am so sorry that you did not receive the news you were hoping for. It is hard when you experience a let down like that.

    If it helps I met many adults on the ACHA board that I shared on my blog who also had pacemakers and they are living pretty normal lives. Feel free to stop over there and chat with the ones that left messages on my post seeking adult Rastelli survivors. Might give you a little hope Michelle!!

    I do love the pictures in your post though. Made my heart skip a beat!!

  3. alexa looks sooo gorgeous!!!! im glad she is still doin well as she brings great comfort to my heart.... carmen diegos mom... he will b getting a heart CATH on the 9th of SEPT. 2010 then shortly after that his big loooonnng surgery probably nxt month as well... hope all goes well take care


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