March 5, 2017

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

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