HAPPINESS IS ...

 

 {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.

Goodbye Dash!

We L O V E you Dash!  

Thank you for all the great memories!  We are sorry that you got sick and that the doctors could not help you anymore.  You deserved to live a longer life.  You were a great dog!  Thank you for being a part of our family!  We have cried many tears for you today and I'm sure will continue to cry until the hurt begins to fade and only the happy memories remain.  Your forever in our hearts!  May you rest in peace. 

Feeling blue because we're missing you ... 

{good night Dash, Diggy, Diego, Dashell Robert Parr Morales}

Read this scripture to my kids in hopes of making them and me feel better:

"Do not two sparrows sell for a coin of small value?  

Yet not one of them will fall to the ground without YOUR Father's knowledge."  

(Matthew 10:29)

Resurfacing ~ CHD Boston Med

Resurfacing - 1. To rise to the surface again.  2. To emerge after concealment.

This word would describe they way I'm feeling right now.  Many resurfaced emotions.  Deeply hidden emotions in the secluded places of my heart. 

Did any of you watch the Boston Med show tonight?  I had never seen this show until tonight.  I watch very little TV to begin so its's no big surprise I have missed it. I had heard of it before however, but thought it was just another ER show on the block.  Once I learned that this show was a real-life medical drama featuring real stories highlighting the lives of real doctors, nurses and patients then my interest level peaked and to top things off today they were featuring a fellow heart family.  It can't get any more special than that, okay unless they were featuring someone I know or our hospital and/or doctors.  So, it was still pretty special for me, so to the front of the TV I was glued for one hour.  Very rare for me indeed.   

 

A too familiar pain.  Baby Sam and his parents featured on Boston Med. 

No surprise I cried through out the show. Many past emotions both joys and fears resurfaced.  I remembered how I felt when we were first told of Alexa's heart, I remembered how I felt when I gave birth and saw her for the first time, I remember how beautiful and normal she looked and was panicked to have anything happen to her.  I remembered those same polar opposite emotions, Renee, the mom from the show was having.  Both in wanting and needing to be close to and love your baby but at the same time feeling like your placing some undesirable emotional distance between the two of you for fear of losing them. 


I faced it all by my husbands side and it was still a rough road.  She faced many emotions, doctors appointments and diagnosis alone as her husband was away in Iraq while she was pregnant.  Thankfully he was able to make it back for the birth and be there for the sugery and a least a short while after.  I remember how many times I cried on my pillow while I was pregnant.  And sometimes my hubby would wake up and console me.  And other times I would leave the room so I wouldn't wake him.  It was a very emotional time. Pregnancy regardless is an emotional time but facing something like this just rocks your world like it's never been rocked before. 


They showed baby Sam after his surgery being home with an NG tube down his nose for feeding.  I rememered how Alexa needed an NG tube for about a month after coming home.  First because her heart was still tired from surgery and she hadn't yet learned how to handle sucking and swallowing and breathing all at the same time plus she was silently aspirating probably from being intubated.  Those first few days and weeks at home were crazy busy times, and I wondered how we would get through them but we did.   


As I watched the show I heard them before a commercial break announce a website to learn more about mesothelioma as one older man on the show was having surgery for this.  I thought to myself for sure they will share a site before the next commercial to obtain more info about CHD  ...  but sadly none was shared.  A great opportunity was missed.  And I wondered, why?  Is it because they just didn't think of it?  Is it because they couldn't decide which of the CHD organizations to feature?  Is it because there isn't ONE set UNITED group leading the way for the CHD cause?  I wish I could rememeber what the mosothelioma website they featured was so I could analyze it.  I then proceeded to look up CHD.com and congenitalheartdisease.com and .org and nothing came up.  Then I was reading a little bit through the most recent posts in Blog4CHD and came to a post by Nichole, Abby's mom, entitled Ten Wishes, that in part read:

"I wish the CHD community could come together and rally for this cause. I dabble here and there in CHD awareness. I would love to do more; however, I wish that pride and anger or self-serving indulgence did not corrupt our efforts. The squabbles and bickering scare me away enough that I am not as involved as I would like…I want to be involved enough to help change the world, not fight over board policies, presidents of organizations, and which organization has the “rights” to do what they are doing. I wish it was easier to be involved."

I have to say that, thankfully, I have not experienced these sort of the issues with the local group of people I have come across involved in CHD support and awarness.  But I have heard other similar complaints, mostly on-line, about these types of issues occuring.  I know progress is being made.  But I'm pretty sure we (all heart parents) really wish there was at least ONE BIG LIGHTHOUSE lighting the way. 

As the surgeons in the show kept pointing out, this is a journey.  A long journey with a series of steps.  We are on this journey together.  A journey for life in all sense of the word.  I wish and try to offer my own little bit of support and awareness through this blog and will also be donating a proceed of my photography sales to a couple of the CHD organizations like Mended Litte Hearts and/or Children's Heart Foundation or maybe another.  Have not ironed out the details yet but am working on it.  I just know that like my cousin Al ( Hi Al!) recently posted on his fb profile:

"One person can do great things. But people together can do even better."

I know and have faith that the true releif will come at the hand's of God mesianic kingdom. But meanwhile, we have met many wonderful people on this journey, many who are striving to make a difference.  Thank you.