Hoping for Someday.

I awoke to David's hand on my side, saying my name between short breaths. 

Immediately, I bolted up. 

I felt like I had been hit with a bat. My foggy brain was going a million miles an hour trying to process. In those few seconds, I somehow had a mental conversation with myself...which went something like this:

"Amanda....it's his heart. You know it's his heart. Be brave. Focus. Don't panic. You need to focus."

I asked David if I needed to call 911. He said yes. Again, I had to remind myself not to panic. The fact that David realized he needed an ambulance likely meant they needed to actually be called 10 minutes prior.

**Here is where you may need a little back story... Remember my last post? Well, David had been continuing to decline pretty rapidly with his heart health. Just doing day-to-day tasks were extremely exhausting for him. During his work week, it would take almost everything out of him. Thankfully, he has incredible co-workers who helped him a ton..

In just a month and a half, he had lost about 11 pounds..We had been hopeful for this surgery, because we knew it would help him. However, a few days before surgery, he had to be off some of his medicines. Medicine that helps his heart stay in a good rhythm...***

(He's cousins sure didn't mind helping babysit)

I grabbed my phone. 12:31 am.  With shaky fingers, I dialed 911.

His heart was going wayyy too fast. He was in a bad atrial arrhythmia. I kept one hand on his arm, and reached to feel his forehead. It was cold and clammy. I don't have the heart to write what it made my mind flashback to....

Cousin time with sweet little Corban

We were staying at a hotel in downtown Salt Lake with my sister. So thankfully, the paramedics got there within minutes.

By the time they got there, his heart was slowing down. They loaded him up on the stretcher,..and told me to follow behind the ambulance. They followed that up with.."If we turn on the sirens, don't panic, and don't try to keep up, It just means we need to get him there quicker."

Right. Don't panic. I repeated that to myself dozens of times that night. I replaced it with, "Breathe deep, don't think."

Shortly after they loaded him in the ambulance, his oxygen dropped. His heart started racing again... and he kept going in and out of ventricular tachycardia. (Meaning the bottom chambers of his heart weren't efficiently pumping blood to the body. Ventricular tachycardia is bad. It is even worse then atrial arrhythmia's..your body needs blood to survive) They flipped on the sirens, and away they went.

I grabbed my things, and whispered a good-bye to our sweet boy. As a tender mercy, he slept through the whole thing. My angel of a sister was there to watch him.

Once we were in the ER, David was stable. Everyone kept going back and forth of what part of the hospital he should go to. David's heart tends to make everyone nervous.... We ended up spending the rest of the night there in the ER before being transferred up to the floor before surgery.

Primary Children's has so many triggers for me.

The last time we had been in that emergency department...was when we had made the decision to bring Adalyn home. We had gone through there to load her up on the ambulance. I remember turning back to look at the elevators...seeing my sister standing there with tear filled eyes. Knowing it would be the last time she would see our sweet girl.

As I was reflecting on that memory...and watching David doze... a little girl was brought into the room next to us. The curtains were drawn...but I could still hear. She was brought in blue. Hearing the sound of the suction machine...and hearing the nurse say over and over...."We need you to breathe sweet girl. Give us a cry."

Phew...that one sure sent me for a whirl. Those words were far too real. I put my head in my arms....reminded myself once more to breathe. Not throw up. And not to cry. Crying would just give me a headache.

5 hours later, we were meeting with the 2 surgeons that were going to be doing his surgery... Shortly after, he was wheeled down to the operating room. I was able to follow him right until the doors of that room. I don't know how to describe that feeling of putting the one you love into someone else's hands... It never ever gets easier. 

The nurses and anesthesiologist joked with us...then after a quick hug and kiss.. (From David, not the nurses..)..And of course a handful of "I'll be okay's" The wait began.

As another tender mercy that day, I didn't panic. Worried...yes, immensely...but I didn't let myself  panic. I took the pager they gave me and went back to the hotel.. By then it was mid-morning...and I just wanted to snuggle Camon and tell him all about his brave Daddy.

They called to give us updates every couple hours. With the distraction of Camon, my sister, my nieces, my sweet in-laws and a couple of wonderful friends who stopped by...I was comforted.

Surgery lasted 7 1/2 hours for David...which meant he was incredibly nauseous and throwing up the remainder of the evening. But it had gone even better then they had predicted!

My wonderful in-laws were there. I'm convinced they have to have some of the strongest hearts for watching David go through so many surgeries over the years... As another tender mercy, David's brother spent the night with him in the hospital so I could spend the night with Camon.

Both of the surgeons and one of David's doctors came to talk with us at different times. They successfully were able to burn the area that has been causing David to go into the scary fast atrial arrhythmias and they were able to fix a hole in his top chambers.

They were shocked at how big the hole ended up being. It was 1.4 cm (I know that may seem small...but in your heart, that's a big deal). He was only getting 50% of the blood that his body needed. Which explained his rapid decline!

Since repairing that hole, David has felt so much better. He has had much more energy the before and had his appetite back.

During his surgery, one of his surgeons checked his valves. They found that he needs his pulmonary valve replaced, because it is causing too much blood to back flow. They will be replacing it in about  1 1/2 weeks from now. After repairing that valve, the hope is that he will feel even better and his heart will be at a good place.

Driving home that week, after David was discharged, so many thoughts flooded my mind. 

Sometimes, aspects of our lives seem like a such a cruel twist. Oddly enough, growing up...one of my greatest desires was to work at Primary Children's. In fact, I even spent a summer volunteering there. The families and sweet children inspired me so immensely. Little could I have processed how heavy their burdens likely were.

The past two years have been so very hard. In some ways, I feel like I've been in a constant state of holding my breath and biting my nails. Two years ago at this time, we were fervently praying for the life of our sweet girl. We knew the road we were walking down was going to be hard, but absolutely nothing could have prepared me for how difficult this road has been.

At times, the mountains placed before us have felt far too steep....and my legs too tired to attempt to keep walking. 

David describes the past two years as life ending. The day we buried our sweet babe, a large part of who we were ended. We are new people, in a sense, with different perceptions, hopes and desires. Our focus has changed, our thought process is different. Re-learning the new us is a slow process....

I guess we all have those moments. Moments, good or hard, that reshape you.... that change your very core...

My hopes for the moment? To make it over 5 months without a hospital stay. To go through a whole year without fearing of losing my husband or our little boy. I want David to know what it feels like to have a perfect heart.. I want to go on a sunny walk with my family, eat a picnic lunch....and watch Camon giggle.

I want Adalyn to be there too. I want to watch her run on the grass...and tickle her brother. I want to watch David chase both of them....and laugh to myself at the silliness of it all... and then give in and chase all three of them.

That's a day my heart longs for. In all of it's absolutely perfect simplicity. It's the hope of that day that reminds me to be brave on hard days.

Until then, I think I'll just keep working on taking deep breaths. 

To you, my sweet Adalyn, I know it has already passed, but I hope you had a wonderful Valentine's day, filled with the deepest love! We made you a card, and decorated your grave. I made Camon his first Valentine too...it didn't have a picture on it, but he seemed to sure like looking at it anyway! He is such a cute boy Addie baby. I'm sure you know that though. He is an absolute gift to our hearts. You know, one of the things I am the most thankful for with the past two years? I'm grateful to have loved and been loved in with such beautiful depth. You taught my heart how to love more fully... These days, even amidst all the whirl that surrounds us.....Daddy and I still find time to laugh...especially at Camon. We soak in the light we do have. Even on Camon's restless nights, it's a comfort to know that his cries are mostly because he has lost his binkie...and it has shaken his little world.

We took Camon out this week to help us re-decorate your grave for spring. I don't know if my mind will ever wrap around the whole cemetery concept. Instead I choose to focus on your spirit being with us always. Camon seem to enjoy the sunshine!

How lucky we feel to have been given the chance to hold the beautiful souls of you and your brother. Someday, we will have our perfect sunny day. I'll make sure to bring the ice cream.

I miss you fiercely Adalyn, each and every day. You are ever a light for us, my darling. 

XO,

Mommy

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