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

When a Heart Breaks

I have spent so much time this past month reflecting.... Reflecting on each day of May last year. I knew this month would bring up a lot of emotions, but I wasn't prepared.

A sweet friend told me recently that during hard trials, or traumatic moments....we sort of go on auto pilot. It is a type of numbness that helps you get through the days you are facing.... A year later, my "numbness" from last May has worn off...

I shared a handful of blog posts last May...but there were many times I didn't have the heart to include everything...Times when I couldn't find the words to convey what my heart felt.. So, I'm going to go back to last year in this post. Back to many of the moments when I felt completely broken.. 

Just two short days after Adalyn was born, she had her a MRI..we wanted to believe so deeply that everything would look much more hopeful. Instead, we got the opposite. I remember three separate doctors walking us into a room..and feeling immediately scared. The look on each face spoke volumes about what was to come. Adalyn's brain was not compatible with life....best case scenario...if she never were to develop seizures or other conditions...we could hope to have 3 years.

I wanted to throw up. I felt like I was hearing underwater...and not able to process what they were saying...

As they left us in the room to hold each other and cry....As broken as we felt, we made a resolve that we wouldn't believe in statistics... we would believe in Adalyn. We would take each day...and hope we all we had for a miracle.

That night, I was discharged from the hospital. We stayed at the Ronald McDonald house close to the hospital (a place that will forever hold my heart).

As time would have it...David was getting ready to graduate from Physical Therapy school. He was required to be down in Las Vegas to finish and present his research project. Every part of me hated that he had to go. We had no idea of what to expect....what was to come. Luckily, I was blessed to be surrounded by physical angels. My angel of a sister stayed with me each day David was gone. David's sweet sister Aimee visited frequently...and we had such loving friends.

We love Aunt Amber! 

We had thought we were most certainly at rock bottom. The only way to go would be up.... Or so we wanted to believe.

The first two weeks of her life....almost each day another doctor would come talk to me about what they thought Adalyn's life would look like...again going over life expectancy...scenarios..etc. Most of those visits I wanted to scream. No one should ever have those conversations about their sweet babies. I had had to hold Adalyn down countless times for different tests and procedures, and felt my heart break with each of her cries. Each day was such an emotional uphill.

Through it all, we held to Adalyn. She was the strong one. She continued to develop abilities that amazed us

David was able to come back on the weekends...he always is my comfort. In hindsight....I still kick myself for not realizing how sick he was too.... He had hardly eaten for almost two months. He didn't have an appetite. He would eat a few bites of food...and be full. He had pains in his stomach...he couldn't walk very far without being short of breath...and his color slowly turned more and more yellow.

At the time, we just told ourselves it was stress. If you could think of just about every possible major stress people face....we were facing it. I mean, not just were we facing bringing a new child into the world...she was medically fragile. David was graduating. We didn't really have a home. Or a job.

Needless to say, our eyes were blinded...and we just assumed he had ulcers. We couldn't have been more wrong. In fact...a week before we found out what was really going on with David I had said."David...you have to stay healthy. There is no way I could handle you being in the hospital too."

As the end of May came, we had started feeling more hopeful. David was done with school. Adalyn was doing amazing at eating from the bottle....we hadn't seen any signs of seizures...We were even talking about getting ready to go home...we had almost ruled out Adalyn having to have surgery for a G-tube.

I love looking at pictures of her with her special bottle. She worked so hard! 

I felt such hope that we would go home and thrive....that the three of us could beat the odds we were up against..

However...all of my hopes came crashing down in a matter of days. Those days still haunt me....still have the ability to bring up all of my helpless insecurities.

Adalyn had a swallow study to make sure she was swallowing correctly as she would eat. We weren't even worried about her not passing it. But during the test, she showed signs of aspirating her food... Meaning some of her food would go into her lungs... The tech fed her so much at once that Adalyn threw up all over... She was so upset. I wanted to grab her and run away... Again we were left feeling heart broken...she loved eating from the bottle. It was hard to take that away from her. Hard to imagine sending our sweet little girl into surgery.... We left that test in tears....only to get hit by another metaphorical train.

Quite literally by the time we got back to the NICU with Adalyn, an EEG team was there waiting for us. We had seen signs of seizures for a couple days, an EEG would confirm if they really were.... We desperately wanted to hope it wasn't. Once more, we had to hold our sweet girl as she was hooked up to dozens of wires...

Within an hour....they confirmed she was indeed having seizures. I never knew of anything I would grow to hate more than those awful things...

That night, the pharmacist came to give Adalyn her first dose of seizure meds....Ironically...that morning I had joked with her about how we were her easiest patients because Adalyn wasn't on any medicines.... Once more I sat eating my words as she cried with us...and explained what they were going to give..

We left the hospital that night feeling like our legs had been knocked out from under us...We cried and cried for our beautiful, sweet girl...Those helpless feeling had hit us heavy that night.

The very next day....David thought he should go get his "ulcers" checked out....and I went up to be with Adalyn.

I got a call from David...his first words were..."You're never going to believe this.." I laughed. Thinking it must be something simple.

His next words were that he was heading to the emergency room. 

On his way to the ER....he was able to briefly stop to see me..... at the same time Adalyn's neurologist came to talk to me about what seizures meant for Adalyn.

I felt like my world was crumbling as I held her..watching David walk away.. Tearfully trying to listen to what her doctor said.. Trying not to let myself process David's news yet... Trying simply to remind myself to breathe.... As soon as her doctor left I quickly put Adalyn down, gave her a kiss...and went down to the ER.

I walked into David's room and felt my fears hit me like another train. Seeing him hooked up to everything made my heart sink... As it would turn out... David was in multiple organ failure... He had fluid backed up everywhere. His abdomen was full of fluid..and his lungs... He was in severe heart failure....his liver was failing....and his kidney's weren't in great shape...

By the time I got there...the Heart failure/transplant team had been notified. The first thing I could find to pipe out were.."Is he going to be okay?" Dr. Gloom....(how I like to refer to him...due to his bedside manner....) Said.."There is no way to know at this time. Look at him... He looks awful. Look at his color. Look at his legs... See...pitting edema...." Needless to say....he brought all my worst fears to the table.

The whole time... David was squeezing my hand trying to whisper... "I'm okay...really. I'm okay."

I felt like screaming....no....it's not okay! You're not okay. This isn't okay.... How can anything be okay?! 

Still smiling...even in the hospital. That's David for you. 

A few minutes later...I found a bathroom....and sobbed. I couldn't even find the words to pray other than "Please......please help." My world was hanging in the balance. The two people I loved more than anything were fighting for their lives....and I could do nothing for them...


In a matter of a few days, David went from being 150lbs....to a big 128 lbs. At that point, I felt like if someone had asked me where we lived....I would have honestly said the hospital...because that's where we were all staying...

The allowed David to come down to the NICU to visit Adalyn....I think each of our nurses and NICU team cried each time they saw David come down. We were quite the sight those days..

The next couple weeks....I would be carried by strength other than my own. Honestly...even a year later, I know it was not me that got myself through those days. Adalyn continued to teach me in those days about what courage was...  I still am at a loss to describe how it felt to send both my husband and my daughter into surgery a day apart. David, by a tender miracle, would make a full...and amazing recovery...(after losing almost 25 pounds of fluid)

Taken about a week after their surgeries. She loved naps with her Daddy!

Little did I know, even then...what would be in store for us as the months continued. Little could I be prepared for hardest good-bye we would ever have to say as the year came to an end.... 

I don't know if you've even made it this far in reading....I guess I needed to write all this down for myself... The thing is...those moments last May...and many after during last year....changed me. In every possible way. There are nights I still wake up in a panic..feeling like I need to see if my husband is okay... Nights when I replay memories over and over... Days when I feel okay...and then suddenly am over come with panic..

I share this because...yes, last May held dark days..but never had I felt such an outpouring of love. A love that would continue to carry us. From our nurses...who held me and cried....from incredible friends who showed up with baskets of food...hugs and comfort.....to our incredible family who never failed to show up...who always helped to carry our struggles.

Never did I realize that there would be people praying for me...for us...when I couldn't find the words to pray. Never could I have known that our absolutely perfect little girl would find a place in countless hearts....and help us to be filled with the courage to take one more step. 

No matter what the days held, our comfort was Adalyn. She loved sucking my finger much more than binkies!

There are still many things that scare me. Many things that I am re-learning about myself....and many breaks in my heart...

But one thing I know I can say in reflecting on last May....and many months follwing....is that I'm slowly learning what happens when a heart breaks. God doesn't leave us when those moments come. God stands beside us with each break. He weeps with us...and His love is one that never fails. We will have days....months...and maybe even years that break us... that seem to shatter every part of our heart... but God will never lose those pieces of our heart. He will build us into something even greater. His love will be the gold that fills each crack. Each break.

He knew how much we needed Adalyn. He knew her life wouldn't be easy....but He knew her love would be an incredible and life changing gift for everyone who had the chance to know her. Especially us. 

Last of all....in thinking of last May..I realize how precious and fragile this life is.. I truly realize the gift it is to have another day with my incredible husband....to have held our sweet little Adalyn for all her time here...to have spent nights awake with her...to simply have had time to give her baths...kiss her toes...sing her songs....go on walks... All of it.

Miracles still happen. Even if it isn't the miracle you expect...or think you want. 

So once more...here is to you, my darling Adalyn. What a life you have given us.....what love you pour into our lives. I miss you always....and see your beauty in so many things. You are and will ever be the greatest gift of our lives. 

When Words Fail.

Some days....I feel like I am stuck in a fog...unable to see anything.

It's been a while since I last wrote. I guess most days I don't know where to begin typing my feelings. I am realizing that there are some emotions that you cannot explain with words. I don't always know how to convey the breaks in my heart.

Last week was two months. Two whole months that we have lived without our sweet Adalyn.

I read recently that there is a darkness that comes with grief. I now believe that wholeheartedly  There is no way to avoid it. It has to be walked through. It has to completely envelope you. In ways.....it is like stepping out of the light, and into a tunnel. To get to the other side....one has to walk through the dark tunnel.

Right now....I feel the darkness of that tunnel. And some days, I don't feel like my heart has the strength to keep moving forward. Some days....it feels like there is no light.  And some days....I don't want there to be light....I want to stay lost in the dark. I am afraid of doing "normal" things again....because that just reiterates that Adalyn is gone. I ache when I think of what she faced. I ache to feel her in my arms. I ache for the little things...to hear her sigh. To hear her have the hiccups.

A little blurry....but here is one of the projects we have made!

I wonder if I spent enough time counting her fingers and toes. I wonder if I spent enough time gazing at her sweet, perfect face....memorizing each and every curve. I wonder if I told her enough how truly special she is. I wonder if I praised her enough for every kick of her legs...bottle feed....and head lift..

The thing is....I think I will always wish for more. I will wish I had time to count every hair on her head 100 times. I wish I had even more pictures. More videos. More cuddles. More late nights. More time....

I think all too often we each spend so much of our days wishing them away. Waiting for the next best thing that we think is just around the corner. In reality....we each, most often, have the biggest gifts in the world right in front of us. To love and be loved is far greater then anything we will ever buy....or honor we will receive. Often....I think maybe the simple miracles...and beauty of life happens in the moments we wish away. In the struggles we wish we didn't have.

I would re-live the hardest days of my life if it meant I could hold her for one more hour. To see her smile once more.... To hear her squeals...To have time to sing her a few more songs.....and kiss her sweet cheeks.

We are often asked how we are doing....and while I am so thankful that people reach out to us and ask...I often struggle internally with how to answer.

I think it is such a weighted question. Most often I say "Okay" Because I am not fully sure what to say. In my mind.....I race over a thousand different emotions. I say "Okay"..because we have seen such tender mercies....such love.

I say "Okay.." Because how can we relay the feelings of burying our baby? Of the decisions we had to make? Of watching her suffer? How do I relate how I go from feeling so broken.....to feeling so proud of Adalyn? How do I convey the depth and width of the emotions that come with a grieving heart? How to I relay the fears that scare me? Or the the questioning "whys" that bubble up? How do I tell them that once you have a child....the need to care for them never goes away?  How do I express the way my love for Adalyn keeps growing every moment...even without her in my arms?

Some days....are very dark....dark days. Days when I question everything. Myself. My faith. My prayers.. Some days..... a life time seems too unbearable to live with out our sweet baby. Her absence feels so heavy....our longing for her so great.

Some days...I feel so blessed for what I have....for the time we had with Adalyn.....for the beautiful moments we hold so close.

Oh how I miss nights like this...

Other days.....We go through the day...accomplishing errands, spending time with family...."normal" things. But whether we are getting gas....picking up groceries....eating...working...my thoughts are on her. The emptiness on our hearts is constant. The pain like a companion.  My heart longs for her. That part of me always will...in every moment. That part of me will always feel broken until I am able to hold her in my arms again. I still struggle to sleep. I struggle in the calm....quiet of the night. It is then I feel like I can't breathe. It is in those moments my fears flood over me.

The past month especially I have struggled. I have struggled in ways that I can't fully admit. I have questioned my Heavenly Father. I have questioned whether or not He is truly listening.

I convey these things.....because maybe....maybe there will one day be someone who's heart is breaking in the same way. Someone who needs to know they aren't alone..

I know I have needed those very things.

I have come to realize.....in the darkness of the tunnel we're in....there will be lights. But the light doesn't completely take away the darkness. It remains there....it is part of the tunnel. However, the lights.....though at times they may just be flickers....are what will lead to the true light at the end of the tunnel. The light of being back with Adalyn.

I think I need to start holding to those flickers.

Our flickers have been through the tender mercies of so many people. Of the cards that come in the mail. Of the words....phone calls...texts....and messages of loved ones, friends and even strangers. To so many who have simply listened to us...mourned with us and followed us on this road...those who have reached out to ask how we're doing...who have asked about Adalyn and let us talk about her...we thank you we all our hearts. We have received such a beautiful outpouring of love from so many of you. Know every card...every message...is read and re-read.

I am trying to hold to those. I think at times my heart is angry.....and I can't always see the lights I so desperately need.

But I have to trust that somehow.....my Father in Heaven knows exactly what is written on my heart. He knows the feelings and words I am too afraid to utter. I have to trust that....because if I don't....I will stay lost in the darkness. I need His hope. His comfort. His love. 

A big tender mercy came last week. David had his heart check up. Going back to the hospital felt like scrubbing a wound with a wire brush. I was so afraid. Even simply walking through the doors, I felt my eyes burning.

They did several tests on David....and checked his pacemaker. When his cardiologist came in....I just wanted to hug her. Since she works at Primary Children's....and follows David....she knew about Adalyn. I have always felt that she is one of the best, and kindest doctors I had ever met....but that day my gratitude for her tripled. She said some things about Adalyn and us that my heart really needed to hear.

Most of all....we received really good news about David's heart. Everything is looking really good. His doctor is pretty amazed with how good David is looking physically...especially given that he was in Stage 4 heart failure during May. The valves they have been worried about are doing much better now that his pressures are better. She doesn't foresee David needing surgery for at least a few more years....and even then it may just be a simple battery change. I realize that I have never fully explained about David's condition...and for those of you who have asked....you can read all about it by clicking here.

We are ever grateful for the thoughts and prayers that have continued to be offered on our behalf. Many of you will never know the impact you have had.

To our sweet Addie Grace....You are our brightest light. I am so proud of you. Every single moment. You have done greater things with your life then many of us ever will. Your sweetness....your strength....your love....each of those things continue to touch us and carry us. You are my baby, sweet girl, and I will spend a life talking of you.....kissing your pictures....and holding your blankets until I can hold you again. Each night....I go to sleep imagining you climbing into my lap....telling me all about your day in Heaven. I love you. I love you so very deeply. And that is why our hearts are so sad.....But we try each day for you. Because of you....I'm trying to hold every moment a little tighter.

*This picture was another tender mercy for us. An amazing new friend of ours named Leah helped get this for us. She too had a little angel warrior, named Caleb, that went home to heaven far too soon. You can read his story here. There is a woman in Australia who writes the name of children who have passed away on a beach. She calls it giving them a sunset. Each sunset is for one child only...and is unique. Leah had this woman write Adalyn's name. We love it so much! I love to imagine her dancing along that beach. It is as beautiful as she is! 

For more the story behind these amazing sunsets...they are called the seashore of remembrance. Her blog can be found by clicking here 

Getting Through...

Last week I felt that so many aspects of my little world were simply dangling by a thread. I felt like I couldn't think more than a few hours ahead at a time. For all of you who have shared our story.....who have prayed for us.....visited....called...sent messages...we are so incredibly grateful. Words cannot even describe how much it has meant.

Today we got the most humbling visit from David's classmate Trevor and his lovely wife Kiera. Thinking of their visit we still get emotional. They brought a gift from all of his classmates...I don't know if I can ever truly express how much their act of kindness has impacted our lives. He met some of the most amazing people through the physical therapy program! We are so lucky to have them in our lives.

We don't even know where to begin to say thank you. You all may never realize how much you have helped us...and carried us through your words and actions. We never expected to be on the receiving end of such enormous amounts of love, support and prayers. To be in the situation where we have truly needed it.

After David was admitted to the hospital last week....he lost about 15 pounds of fluid in two days. With all of the fluid off of him...he started feeling so much better! Loosing so much weight that fast though drained him of his energy.. However.....if you ask David...he will always tell you he is feeling good. He is never one to admit when he isn't feeling well.

Since they knew we had a baby in the NICU....and that we would still be around....they discharged him on Sunday and set up surgery for Wednesday.

Adalyn had her surgery to get her G-tube placed on Tuesday of this week. Nothing could have prepared us for how hard that was going to be. How hard it would be to watch her be hungry for the hours before. How hard it would be to watch them wheel her back.......knowing that a little baby wouldn't understand the pain she would later experience.How hard it would be to know they were about to pierce her perfect little stomach. Or how hard it would be to see her recover.

She was intubated for surgery....and they wanted to leave the vent on for 6 hours following surgery to allow her time to wake up from anesthesia and breathe on her own again. It was the most heart wrenching and longest 6 hours. Adalyn began to wake up....and scream. However....because she was intubated......there was no sound. David and I had to hold her little arms down for close to two hours....and watch her silently scream...trying to give her comfort. That image will forever haunt my dreams. We felt so helpless.

The first few hours following surgery.

We questioned everything that night. Was surgery the right thing?? Did we just bring her into this world to suffer? After they pulled the tube.....her throat was so sore.... Her cry wasn't much louder than a scratchy whimper. Our hearts felt again like they were breaking.  Knowing she was in pain. Knowing she still couldn't eat for 12 more hours. Knowing we had to leave her again for the night without our comfort.

It was awful. I would never wish that upon anyone.

The very next day....David went in for surgery. I was a million times more nervous then I would let myself admit. They were planning on exploring around in his heart...and replacing one of the valves. Then for good measure....taking a liver biopsy....since his liver had some damage from the week before. However...once they got inside his heart....they were taken by surprise. (Which shouldn't have been a shocker...David always seems to have that effect of doctors). They saw some other areas that are leaking. So....as a result....they didn't want to fix his valve and in turn cause problems elsewhere. This week they will have a meeting to decide what will be the next best step to take and address what should be fixed. For now though....David is discharged...recovering... and doing so much better then last week. The hope is that we can keep him this way as long as possible and prolong another procedure!

When David was discharged that evening.. I brought the car around to pick him up. As he stood up....I noticed his neck bandage was filled with blood.One of the veins they had gone in had sprung a leak. Of course. Why would leaving the hospital ever be easy?!

Aimee, his lovely sister, was there to wheel him back up quickly while I parked the car again. Luckily....it was a quick fix. He was given a shot to help the blood clot and stop bleeding. Even with that..I was feeling so hopeful. Adalyn was recovering well....David had made it through...and we had a discharge date for Saturday!

Lately....I at times feel just when I get my hopes set on something....things take another turn for the worse.

Adalyn's G-tube site got infected. 

For yet another time.....I had to hold her sweet little arms down as they poked and poked in search of a good vein to start an IV. I never would have imagined that my soul could feel so stretched so often. I wanted to sob with her. Coming back to tell David was another hit. Our hopes of taking her home sailed out the window...for up to another week. It wasn't supposed to be like this. A new baby is supposed to worry only about eating....sleeping....pooping....and getting all the snuggles in the world.

Yet Adalyn's first month has been filled with painstaking test after test. Poke after poke. Beeping monitors. IV's. Assessments. Tears. Surgery. On and on it seems.

Evenings are the hardest. When our thoughts catch up to us.....and the autopilot mode slightly switches off. Seeking understanding is hard. The past month has felt like a continuous battle that we are trying to wage.....A battle that is uphill. In a blizzard. With no shoes on. It has felt like each piece of good news we receive is followed with the bad.

I have worried until I was certain my hair would be white. I have cried until I was certain I could fill a pool. I have felt afraid. And scared. And frustrated. I have wanted to run and hide......certain I was not strong enough. 

Strength. What it all comes back to. What is it? I have asked myself that very question so many times in these past few months. I thought I knew. People have told us lately that we are strong. Honestly.....we don't feel that way. I think if most people saw us all the time...,they would see what a mess we are most of the time.

Most days we just get through. And I have decided that's okay. I don't know if there is any sort of manual about how to be amazingly great or a rockstar at getting through trials. (If there was I would have bought a dozen copies by now).

My sister shared this scripture with me the night we found that Adalyn had an infection:

Isaiah 40:29
He giveth power to the faint; and to them that have no might he increaseth strength.

I have thought of that so frequently. Most days I feel exactly that way.....that I have no might. No strength. I have come to realize that even on the days we are simply getting through....we are only able to do so because of Christ's strength. He is the one that gets us through the tough days....and through the days that we wonder if there really are happier days ahead.

I don't know if understand the reasons why....I don't know that we ever will. I do know however...that because of the past month.....because of Adalyn,....because of all the incredible people in our lives.....we always we have felt more love than we ever knew was possible.  I felt somehow even more love for my husband and the person he is.

Even though it doesn't always feel like it....we know that our hospital days will come to an end. That somehow....there are happier days ahead. Beautiful days. Amazing days that we will get to spend together with our sweet little girl.

For that.....we can't wait. 

When It Rains..

Some people say when it rains it pours....

After this week....I have felt more like when it rains....it pours...then turns into a hurricane....and then it turns into a giant flash flood. 

Days have been hard. So hard. Each day has felt like a whole new and almost overpowering wave of the unexpected. 

Blow #1

At the start of this week....David and I were so hopeful for little Adalyn and her bottle feeds. She was up to a little over 50% of all of her feeds orally! She was loving eating from the bottle and getting stronger in learning how. She had a swallow study this week just to make sure that she wasn't aspirating any of her food....and to see the pathway of her swallow. 

During the study....they found that Adalyn has been aspirating some of her food. Because of this...we had to stop all oral feeds...and get things in order for a G-Tube next week. We were crushed. Not because of the G-tube....we know that the G-tube will be so much better for her than the N/G tube...she hates that and pulls it out.....We were crushed because she enjoys her bottle so much.. To take that away from her was awful. 

The nurses and OT's cried with us. They have seen how hard Adalyn has worked. How much she loves it.... 

Blow #2

With Adalyn's brain anomalies, from the beginning they have told us she is at risk of seizures. Seizures that could potentially get so severe that they cannot be controlled by medicine. We had been praying so much that she wouldn't have to go through that...

However...a few days ago, we began to notice seizure activity. She would fixate her eye,  jitter for about 15 seconds....and drop her oxygen They decided to do an EEG to see. Watching them stick all of the wires on her little head was heart breaking. Holding her while she kept screaming until she exhausted herself to sleep....knowing there was nothing we could do made us feel so incredibly helpless. Watching her sleep after...all covered in wires made us just want to take her and run away from all of this...and pretend this was all just a bad dream.

As it would turn out, she was having seizures. 

They started her on anti-seizure medicine. The first dose sedated her for a good day and a half. They say after a few weeks, she won't be so sleep from the medicine, that her body will get used to it. 

Even after the first few doses....she has still had a few seizures. They increased the medicine today in hopes to control it. 

Blow #3

This wave has felt like it will overpower me...almost more than I can feel to bear. 

David has been having really bad stomach pain the past month. We attributed it to stress....thinking it was ulcers (we could have been more wrong!) He decided to go to an Insta-Care clinic this week. For him to say that he needed to go to the doctor meant he should have gone a long time ago. 

At the clinic....they found fluid in his liver. And lungs. And abdomen. 

They sent him back up to ER at the U for more tests. As it would turn out.....David is in acute heart failure.

Those words have almost threatened to bring my world tumbling down this week. One of the valves in his heart has grown too weak to continue to work properly against the pressures....and has caused severe fluid back up all over. Because of the way his heart is.....this is mostly reversible for him. 

So....David was admitted to the hospital immediately. They want him to loose twenty pounds of fluid. It has only been one day and he as already lost ten! 

After he looses the fluid, they will go in through with a catheter and replace the valve. 

Meaning both David and Adalyn will be having surgery next week. 

I still feel like I don't even know how to begin processing one ounce of this week....or even begin to type how I feel. My heart aches in more ways then I ever could have imagined. It currently partly lies on two separate floors of the hospital. 

The NICU nurses.....our family....and friends who have been there this past week have carried me through in so many ways, They have cried with me....made me laugh....and somehow kept reminding me that I can do hard things. 

I feel like my steps have never been more unsteady in my life. Sometimes I pray for the strength just to get through minute to minute. Some moments.....I just want to hide under a blanket and cry. Other moments I feel so lifted....that somehow....someday....this will all be okay. 

Through all the of this.....I know somehow there is a purpose. A reason. A silver lining of hope. 

We have to believe that. 

It is a tender mercy.....at least we have been up here when Adalyn's seziures started. At least we were at the best place possible for David to have this surgery...

Mostly for now... we just keep telling ourselves we can do hard things. It is in no way easy. But we're somehow moving forward. 

Updates will come as I have time to post them,. 

Hopefully you all know how grateful we are for each of your prayers and support!