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

Saving a Life.

Last Friday morning I was feeling pretty good. I've been working hard lately to not let anxiety get the better of me. That morning, Camon had been such a smiley boy!  We were both all ready for the day, and jamming out to some nursery rhymes....when I thought I would check the time on my phone.

I had 3 missed calls from David...and a voicemail that wasn't from him. It was his co-worker. Asking me to call them back ASAP.

Instantly my breath caught in my chest. Something was wrong. Why hadn't I turned the ringer on that morning?!

With shaky hands I hit the call back button.... David answered...sounding shaky and rather out of it..His first words were "I'm okay.." Those words are never comforting for me. I know him too well. "I passed out at work and they are transporting me to the emergency department." I hung up without even asking details. I simply told him I would be there right away.

I hung up telling myself not to panic. Not to cry. Sure, in normal situations, passing out might mean a simple problem. For David though? It points to something being wrong with his heart. It had been years and years since he last blacked out..

My next call was to my in-laws. They are absolutely wonderful, and were already on their way to pick up Camon and I. David had taken our car to work that morning.

On the drive over....I kept repeating in my mind. Don't cry. Don't panic. Breathe. I wanted to despise hospitals...and how they seem to be such a huge part of our lives.  I wanted to hate the way that my fear of losing David rises so quickly to the surface in the days since we lost Adalyn.

Just walking back to the room he was in and hearing everyone's beeping monitors made all my anxiety bubble to the surface...Beeps to me mean seizures. It means not breathing. It means hospital stays and life flight. It means being afraid.

Before long, we were with David... seeing his battle wounds from his fall. Holding his hand as he as he recounted what he could remember and what he had been told.

David was working when he felt his heart begin racing. He stepped out of the room with his patient and sat down. He knew something was going to happen, He attempted to call out to a co-worker...and then completely blacked out.

A short time later, an amazing nurse came around corner and saw him laying face down on the floor. She rolled him over. He was pale/ashen with a bloody face. She felt for a pulse, but couldn't find one. She called for help and began chest compressions. 

When David came to, he was surrounded by his co-workers and the rapid response team. It is the absolute greatest tender mercy that David works at a hospital here. The doctor, nurses and other therapists knew instantly what to do.

In the emergency room, they were able to read his pacemaker and see what happened. His heart began to go about 200 beats per minutes. He went into atrial flutter...which began to speed up his ventricles at an equal rate.

If you don't know much about the heart, here is the basics. When the heart begins to beat that fast, it basically isn't pumping any good, oxygenated blood to the body. It's too fast to even feel a pulse. Which is why he blacked out. 

The thing is, his device is supposed to be able to pace him out of situations like that before it turns scary. This time it didn't. Why? Well...as it would have it.....after his surgery in November..they left that setting of his device off. 

If you're surprised and shocked right now, so were we.

After several hours, of back and forth contact with Primary Children's in trying to reach David's cardiologist, we were able to go home...with promises of following up with his doctor as soon as possible to fix the settings on his device. Having a special condition means no one but your main doctor dares to make any medical changes.

The thing is, once David is back into a normal heart rhythm..hedoes perfectly fine. So after a couple days of rest, he is doing great!

Meeting cousin Corban, just a week older then Camon!

That night, and many since...I have laid awake thinking of the haunting image of David laying on the floor...gray and unresponsive. It makes my stomach churn and my heart ache.e

I think of the nurse who very likely saved David's life by doing chest compressions and helping his heart get back into a normal rhythm.

I don't know if she can ever know how utterly grateful I am for her. How do you begin to thank the people who saved the life of your other half? Your best friend? Your world?

Tears fill my eyes each time I think of it.

Those thoughts have led me to thinking of the past year and a half of our lives. I've thought of all the times that people who have saved my life in a different sense.

There have been countless times when I needed saving...Emotionally...mentally...and spiritually. Times when the darkness felt like it had won, and numbness crept in.

As we laid in  bed that night, I told David I was so amazed at his attitude...that with everything the day brought...he didn't complain. He tried to make the people around him feel better about what was happening.

His response has become my motto for this upcoming year. He said.."I think I'm learning that you can't always control how you feel. You can't always control what happens to you....but you can control how you treat people." 

Pretty profound, right? Little does he know how amazing he is.

There have been so many people the past two years of our life that have carried us. People who reached out in seemingly simple ways...that were life-changing for us. In the middle of the darkness we have waded through, so many people were there to remind us that there is good. There is hope. There is love.

People who helped remind us that God is there...that He is real...And present even amidst fierce storms. 

They were people who saved our lives.

Going into a new year, part of me feels afraid of all of the unknowns that I can't control. But I know one thing is certain, I want to be a life-saver. I want to hold to the good in this life. As hard as it is some days to feel...and to live...I want to take each day for the time it gives me. I want to make those around me feel loved and comforted in the same manner that has been showed to us.

I want to be the same "life-saver" that countless people have been for us. 

I can't always control my fears. I can't control the absolute ache I have for our little girl. I can't change David's heart problems. I can't control the storms that seem to find us..but I can hold to my ship and sail another day. 

I have watched as both Adalyn and David have fought to live this life. It has been the most painful thing I have ever gone through. Yet...this life, being married to David...having Adalyn...and now little Camon...has given me the greatest beauty and the deepest love. It has taught me what faith is...and given me true hope in God's plan for us.

I guess we never truly know when our life will need saving. Some days, it may be in the literal sense. I think even more often though, we all need saving in other ways. It's easy to be frustrated. It's easy to want to soak in the unfairness of it all. 

It is harder to seek God in the middle of it all. It's harder to hold to hope...but those are the very things that will save our lives.

To my sweet Adalyn....goodness what a life we live sweet girl! I feel so humbled and grateful to know that you are ever our guardian angel. Thank you for keeping watch over your Daddy. I can't believe that 2016 is over. It was a pretty hard year Addie baby..so much change. Daddy got a new job. We moved. Daddy had two separate surgeries...and we welcomed your little brother. The hardest thing though was living through a whole year without you. Thinking of living through another whole year without you hurts my heart. I want you to know that I will continue to strive to live this life for you. I want the light people may see in us to be a reflection of your light. I will seek to have our home be a place where heaven can be felt...a place where all who enter feel of you...and feel love. We will strive this year to make beautiful memories with your sweet brother and always look to see you close.

I love you always my darling!

XO

Mommy

P.S...Your Aunt Aimee's family gave us the sweetest hat. We definitely feel like it was meant for your little brother. It is almost exactly the boy version of your little owl hat. We love it so much!