Matters of the Heart..

*Disclaimer....this post may be a little jumbled. My thoughts these days seem to be rather scattered. *

First of all, our little Mr. Camon hit his 2 month mark this past week.  He weighed in at 12 lbs 14 oz and is now 24 inches long! We were able to bless him this
past Sunday.

He wasn't too thrilled for more pictures.

We are amazed at each moment we get to spend in watching him grow. Because of our time with Adalyn, we have immense awe in the little developmental milestones. It truly is amazing to just sit and watch him kick and wiggle. Which he does all the time! He is a little mover. I feel like doing cheers each time he lifts up his head during tummy time....or when he tracks objects with his eyes...and when he bats at his little toys.

He has started to enjoy bath time. I think he has a goal to pee on me each time, no matter how prepared I think I am to dodge it. He loves to feel textures of things. He is very particular (much like his sister) and likes things to be done his way. He is a social little guy...and would rather spend his day being played with instead of napping. His smiles light up his whole face. He has also recently discovered a love for sucking on his fist. He very much loves his Daddy...except when he sings in a really low voice.

Most of all, he has given our lives purpose once again.

I still have nights of waking up in cold sweat..with the sound of alarms echoing in my mind. In those moments, I have to go watch him sleep for a few minutes...just to make sure he is breathing.

He is a brave little soul to come to David and I....who are still figuring out how to put the pieces of our life together.

On a completely different note, ( I forewarned this would be jumbled)...we had an appointment with David's cardiologists a couple weeks ago. If you remember from my last post, we had quite the scare with him recently. We were hoping that the solution would just be to turn the right settings on in his device.

With David though, it often isn't that simple.

He passed out at work because he went into an atrial arrhythmia. Meaning the top two chambers of his heart weren't doing what they were supposed to be doing. Normally, his pacemaker can get him out of that if the setting is turned on and it isn't a big deal. However, David goes into atrial arrhythmias a lot. Over long term....this takes a toll on his heart.

So, they want to see if they can lower or stop that problem. Meaning another surgery.

They will go in and do an ablation. The surgeon will go in and put his heart into a bad rhythm, and map out the electrical circuit. Then they will  burn some of the heart muscle to create scar tissue at the weakest part of the circuit. The hope with this procedure, is that when his heart goes into a bad rhythm, the electrical circuit will hit the scar tissue and stop. Thus preventing any atrial problems before they even begin. The success rate of it working well isn't very high...but even if it helps slightly, it will be beneficial.

The next issue we have been having though, has been the one that scares me most.

The past month and a half, David's energy has been taking a heavy dive. His appetite has been decreasing...and he has been losing weight. For those of you who have been along for our ride the past 2 years....those symptoms match the time that he went into heart failure (and multiple organ failure) shortly after Adalyn was born.

At his appointment, they told us that David's hole between is atria has gotten significantly bigger. David's heart structure is rather complicated. His blood flows from his right atria to his left atria through a type of shunt called a baffel. With a hole there, the blood isn't able to flow very well. Which causes fluid back up. Which in turn, can cause heart failure.

Oddly enough, hearing that there was a hole was comforting to me. A hole can be fixed. If it wasn't a hole....it would be his overall heart function is failing... And would lead to meaning the T word. And I'm not ready to even think about that. Not for at least 20 more years.

So, in just under 3 weeks...David will go in for surgery again. Luckily, they will be able to do it all through catheter. And we will be able to do it at Primary Children's again. However...there are whole lot of "ifs" hanging in the balance.

The ablation (burning some of the heart tissue) will take a minimum of 6 hours. If everything goes smoothly, hopefully it will be less time. After they burn the tissue, another surgeon will come in and repair the hole. If he has time, he will also replace David's pulmonary valve.

Meaning surgery could be anywhere from 6-10 hours long.

My own heart is sick just thinking of that. Waiting rooms are awful. And they never get any easier. It is staring at the clock. It is praying so very hard that the hands of the surgeons are guided. It means watching the person you love so very much....endure such struggles.

We are choosing to stay hopeful though with this surgery. The past two years, David's heart hasn't been in a good place. This surgery will hopefully make his heart happy again...and get him back to a long stretch of heart health. For just about 10 years, David's heart did great. It has been recently that things seem to keep piling up.

Honestly, in many ways, it has felt that way about everything in our lives the past two years. It was this time of year, 2 years ago, that I began to write about the journey we were beginning with Adalyn.

I read those posts now...and I feel like such a different person. That version of Amanda was much more carefree. She was so hopeful, and so believing that everything would turn out they way she wanted.

The version of me now is much more afraid. Some times, my fears feel almost debilitating. Since we have had our sweet Camon, so many people have said things to me such as "We're so glad you can finally be happy"....or "See, now you guys don't have anything to worry about." or..."You guys should relax, your baby is healthy."

I know those are said with the best of intentions. And the thing is, I wish it were that easy. It's true, I am so very grateful, with every ounce of my heart, to have Camon here. He is like our link to heaven. And we do laugh more these days. We see more of the beauty each day holds.

But how to I explain the fears that my heart still holds? How do I convey that my heart is afraid not only of losing another child, but of losing my husband? Because quite frankly....there have been close calls the past 2 years. My fears remain on the surface...because it seems that every few months, we wind up spending time at the hospital. How do I say how anxious I feel these days when David goes to work? Or how I pray so much for him to have the energy and strength of heart he needs to sustain himself through the day...

I have those fears because I know all too well that bad things can and do happen. I know that love is so very powerful....but even love doesn't always stop the hard from coming in this life. We fiercely loved Adalyn, yet we still had to say good-bye. I love David with every part of my soul....but that love also doesn't take away the problems his heart has.

I'm still learning that through all of this, we have a choice. We can choose to be angry and bitter about it. Goodness knows I spend my fair share of moments being frustrated that everything seems to always feel so hard....

Or we can choose to face another day. As hard or unfair as it may feel.

I shared the following scripture when we lost Adalyn, but it is one that hits home for me in so many things.

It is the story of Jesus healing the blind man. So many people had asked questions about why he was blind. Maybe it was the fault of his parents. Maybe it was because the man himself had a sin...or  Maybe he was simply flawed.


Jesus put it plainly.." Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him." John 9:3

I have to remind myself that not every trial we face is the result of our own flaws or mistakes. Rather, many of the trials we face...allow God to show that He is mindful of the steps we are taking...and that we are not taking them alone.

It might be true that love doesn't prevent the hard....but love is the difference. The ability of love to shine through in the darkest of moments is ever a reminder that God is there. It is a reminder to hold to His promises.

I know I sound like a broken record... but He promises that one day, we will be able to stand with Him know all of the reasons why. A close friend gave us a CD recently...On it is a song that puts it perfectly:

" Not now, but in the coming years,
It may not be when we demand,
We’ll read the meaning of our tears,
And there, sometime, we’ll understand
Why what we long for most of all,
 Eludes our open, pleading hand; 
Why ever silence meets our call,
Somewhere, sometime, we’ll understand.
 So trust in God through all thy days;
Fear not, for He doth hold thy hand;
Though dark thy way, still sing and praise,
Sometime, sometime we’ll understand.

Sometime, we’ll fall on bended knee,

And feel there, graven on His hand 

Sometime with tearless eyes we’ll see

What, here, we could not understand. 

So trust in God through all the days;

 Fear not, for He doth hold thy hand; 

Though dark thy way, still sing and praise, 

Sometime, sometime we’ll understand. -Rob Gardner "Some Time We'll Understand


So today... I'm not going to let myself drown in my anxiety. Today....or even just through this hour, I'm going to hold Him to His promises.

 To my sweet Addie baby, I sure miss you my darling. My stomach twists when I think of the fact that we are going into year number 2 without you. I hate that. I wish you were still here with us. I see so much of you in Camon. I see you in his chin...in his hair line...in his furrowed brow....and even in his nose.With every hard thing we have faced... I am reminded to be grateful for the good. You taught me that. So much good was poured into our lives because of you.

I pray you are happy, my darling, so so happy. I pray that you stay so close...and keep filling our home with your light.

XO,

Mommy