Facing Fears.

David and I were scared to death in thinking of what it would be like the first time Adalyn got sick.

This week we experienced it. 

On Monday night....Adalyn started having tons of seizures. Normally, she does have at least 10 a day.....we have been trying to get them under control. However, that night....she kept going through these cycles...she would have a few seizures and then up to 10 spasms in a row. She would scream, then out of exhaustion...fall asleep....only to be awoke a half hour later to go through the same cycle.

It was awful. I simply just wanted to sob with her.

During the day on Tuesday...things were a little better. But by the evening, it got bad again.

We called the on call neurologist up at Primary's....feeling frantic and at a loss of what to do. How do you stop your child from suffering, when there isn't a simple solution?

The doctor told us she felt like there was an underlying trigger that was causing these cycles. Something like a virus...  Our options were to wait it out until the morning and have her checked the next day or go into the ER.

WHAM!

Here it was. Our fear. Staring us right in the face. She had been extra mucusy and irritable. There was no doubt the neurologist was right....she was sick. We were worried it had gone to her lungs...

We decided to wait it out. Our home health nurse came the next day and recommended we go to her Pediatrician. Our doctor listened to her lungs and checked her. The whole time I felt like biting my nails off. 

A respiratory virus.....he had said. He had Adalyn get a chest X-ray, just to make sure that it wasn't bacterial. As a tender mercy, it wasn't. He wanted to see us each day for the rest of the week to make sure she got over the peak of it.

However, there was nothing we could do about the seizures and spasms...except wait out the virus. Unfortunately, when the body is sick, it lowers the threshold for seizures. Making it even easier for her to go into them.

By Friday, Adalyn was still about the same. Her oxygen needs had gone up. Normally, she is on 1/16th of a liter, which isn't very much. Her breathing had become very labored, she sounded terrible.  When we went into the doctor's office that day, he decided she should be admitted into the hospital. 

As he said those words.....my heart sank. I immediately flashed back to our time in the NICU and felt over loaded with panic. "We can't watch her go through those things again..." was all that raced through my mind.

We came home before taking her to be admitted. We knelt with our family in prayer....and as part of his prayer...David prayed that this "Wouldn't be the worst experience ever." We all chuckled at the wording of that...but secretly I felt the same.

At the hospital, once again she was hooked up to extra monitors. She was suctioned, and then put on 2 liters of oxygen. The respiratory therapist told us to expect to be there 2-3 days. Then it was the waiting game. Adalyn slept the entire afternoon....very deeply. It was obvious how exhausted she was. By that night, her doctor came to check up on her.

As another tender mercy, he felt she could go home....on the 2 liters of oxygen, and continuing to follow up with them each day.

We were so grateful that night.....knowing our prayers had been answered. Being home is yet again a wave of emotions. Sometimes....it is so hard to know if we are doing the right thing. Especially during the moments when Adalyn's breathing sounds so terrible....and looks so labored.

These days....she hardly has any good awake time. She is either sleeping.....or awake and feeling fussy. It is during that awake time when she again has seizures. Our hearts can't help but wonder if this is how things will be for her..

Again and again we feel we are backed up against the wall....staring down our deepest fears. There are no words to describe how much it can hurt.

I was thinking about my fears today. At times, it feels like this crushing weight...that I don't always feel able to bear. I think it is easy to let our fears consume us. To give into it's heavy weight. In those moments that we give in, our fears lead us to doubting our confidence in God.

I have realized that we can't always run away from our fears. Sometimes we have to face them directly, as much as it may hurt. I have resigned to knowing I cannot see the end of this tunnel. I have to continually put my trust in Him. It is something I have to daily. I have to keep turning my fears over to Him.

It is then we somehow find the courage to face our fears.

Our neurologist called us on Saturday to see how Adalyn was doing with her seizures and spasms. She increased again one of her medicines. On Monday, if they are still uncontrolled, we will significantly increase the medicine once more. If that doesn't work......we will have to give Adalyn a round of steroids. 

We are praying with all the energy of our hearts we can avoid the steroids. For an infant, the side effects can be heavy. Already....the medicine we are increasing makes her incredibly sleepy...Giving us only 1-2 hours of awake time a day with her.

We again ask for your prayers for our sweet little girl. She is a fighter and has over come so much. She reminds us each day that there is a God. That He does perform miracles in our lives.

I have listened to this song at least a dozen times the past hour. It is beautiful!

A Beautiful Purpose.

Before Adalyn was born.....we knew we wanted her to have a strong name. Something fitting for a little girl who we knew would be so special.

Adalyn: Meaning kind, of a noble birth. Grace: Everlasting hope

That is exactly what she is to us. Our everlasting hope.

We blessed Adalyn this past Sunday, and something David said has been on my mind ever since. In her blessing, he talked about how Adalyn has a gift for bringing hope into the lives of people around her. 

As I stare at our sweet girl, I realize how true that is. I want the world to know how special she is. So...I will continue to share her story, from the good days and the hard days.

I keep wondering if there will ever come a point when any of this gets easier. If there will come a point when hearing the monitor go off won't cause my heart to race.

Adalyn's seizures are still very much out of control. She has also started having what they think are infantile spasms and had another EEG last week. It is hard and unbearable at times to watch. Last night was the worst we have ever seen it. As I held her in my arms, she kept having seizure after seizure. In between the seizures....she would have a few spasms. It broke our hearts to watch.....because the spasms would visibly distress her. She would have one....and then just scream....only to have her little brain send her into another one. 

I hated watching it. I felt incredibly helpless. Especially after it all....to see how exhausted she was. Earlier that day, she had more awake and alert time then she has had in over a week and a half! It was amazing. One of the new medicines she has been on has made her sleep most of the time, giving her only a couple hours of alert time. We had to increase the dose last night.....meaning another couple weeks of sleepiness until she gets used to this new medicine. We are praying so much that this medicine will work.

I wish every day I could take this away from her.... To let her be a sweet little carefree baby. I wish she didn't have to struggle with so much mucus from her cleft palate. I wish I could help make her little brain function the right way... I wish we didn't have to load her up with medicines daily to attempt to keep her seizures at bay.

Nights can at times be the toughest. We awake to hear the alarm and one of us quickly goes to her side....to see if it was a seizure.....if she has just pulled out her oxygen cannula....or if she just momentarily forgot to breathe. Some nights her mucus builds up so much that we have to suction her...Which can be so hard because one wrong move and her mouth gets rather bloody.

Thinking of the future is often what we avoid. Since she has so many brain anomalies....it is uncertain what her little life will look like. Or how long we may have her.

Instead.....I try to focus on what our sweet little girl has already taught us in her short time here.

She has taught me to love unconditionally. 

She has taught me to enjoy each moment.....to loose myself in the good moments and not dwell on the bad.

She has taught me to fight for those good moments. I think she knew before hand that she would come to this earth and have a body that would fail her at times....and cause her many struggles.... But she knew the love and the good she would experience would be worth it.

She has taught me to somehow love her daddy even more.... in seeing the way he interacts with her, prays for her....and sacrifices for her.

Adalyn absolutely loves to be held and snuggled! So perfect.

She has taught me patience. Something I am still not very good at. I can't have everything all figured out....or plan how I want things to go....a lot of our situation is waiting for things to unfold and go from there.

She has taught me how to endure. Adalyn has faced so many hard things in her life thus far. From her I realize it is okay to be upset or sad when facing struggles, but you can't stop moving forward.

She has taught me strength. 

She has taught me to have greater hope. The struggles Adalyn has....she doesn't know any different. She doesn't know what it would be like with a normal brain..or a normal palate....or normal vision.... She just is content with being her. Being around her....I feel her strength. I feel strong enough to get through each day. I feel hope that there is a purpose in all things. That life truly is beautiful. I feel certain that we will all get through this together, and be better for it.

First time out on a walk with her uncles!In St. George summers this is rare!

She is beautiful in every way....inside and out. And no matter how hard the days get, we are blessed to have her in our lives. We are blessed to see God's hand in the details....to see tender mercies..and answered prayers.

Some days I question myself. I question my faith. I question our ability to handle the future....especially in knowing life for Adalyn will likely get harder....not easier. I question why she, and us, have to face this,

On these days I have to remind myself of the purpose of love. As babies are learning to walk....their parents let them fall at times. Not because they want to see their knees get scrapped or bruised, but because they know that through falling, they will become stronger. Their steps more sure.

Each trial we face is like tripping and falling. These past couple months....I felt like we fell, rolled down a hill....and were caught in a rockslide. Falling like that causes cuts and scrapes.

But we bandage them up...trust in God... and keep moving forward. Soon.....we take off the bandage and realize we are healed. We each have a choice in the trials we face. We can either break down...curl up in a ball.....and become angry and bitter.

Or we can choose joy. Choose love. Choose to move forward. That's not to say you won't ever feel those angry or frustrated moments, or feel like running away from it all....trust me....I have definitely felt that. Some days I still do. But you don't let those feelings consume you. You find a way to take a step forward, no matter how small.

Our ways are not His ways. 

He will be there to walk beside us in those hard, scary....unbearable moments.

So...we will keep believing in our sweet little Addie baby. She is our hope. We will keep loving her. Keep kissing her sweet toes and chubby cheeks. Laughing at her ability to explode through a diaper...or at her many facial expressions.

She does the most adorable things with her hands

We are so thankful for the continued prayers on our behalf. For all of you who have continued to believe in us. And for our amazing family members who do so much for us!

Happy Fourth of July!

Needed.

It's Father's Day.

David and I are still trying to wrap our minds around being parents!

In seeing David with our sweet little Adalyn....I see how incredibly blessed I am to have him. Seeing the way he loves our daughter is absolutely beautiful.

I read a saying recently...

"A daughter needs a dad.....because without him, she would have less of the life she deserves."

I couldn't put it into better words. Without David, Adalyn wouldn't completely have all the love she deserves.....all the hugs, songs, cuddles.....and all the in between. Being a father is so much more than merely a presence.. It is a continual action.

It is a need. 

Not just by Adalyn.....but by me too.

As much as we have absolutely loved being home.....it has been hard in many ways. I have so many days where I feel so completely inadequate to be Adalyn's mom. Of feeling so inadequate and unprepared to face the future.

I have had so many moments of jealousy in ways. Longing for the ability to simply just walk into the next room while holding Adalyn and not having it be a huge packing ordeal. I have moments of fear.....as we are up in the wee hours of the morning...using the suction machine on her because she has gotten too mucusy....afraid and I will do it wrong and make her bleed or gag. Or the fear that comes with her seizures...of watching her stop breathing, her color change...feeling so helpless in waiting for her to come back out of it.

We are still afraid of leaving her for very long.....even if it just means going upstairs without her. I am afraid of her having yet another seizure...and not being there...only to hear the oxygen monitor go off...and feeling my heart sink. I am scared at times in watching her as she is more alert...wondering how things are going to be developmentally for her. Wondering about the time we have with her.

It is in these panicked moments that mind my goes back to the week of having both David and Adalyn in the hospital....the fear of losing either one of them bubbles right back up to the surface and my dam of emotions breaks.

It is then I need David too. His love. The comfort and strength he gives me. In wrapping his arms around me and reminding me that I am enough. That we will get through this together. That it will get easier to bear in time.

Being a father is the biggest commitment. It is life-long. It is demanding. It is beautiful. It requires so much sacrifice....

It is essential.

Last night..... as I tried in vain to rock Adalyn to sleep....Feeling exhausted.....Feeling not good enough to be a mom.....I prayed in defeat....Asking my Heavenly Father how he couldn't see how much I was struggling. Asking him to please help me in some way.....just to see His will. I needed something. Comfort. Peace.....Something to get me through the hard hours.

I realized then how much I have truly have needed Him too.

Before....I have at times thought of God as someone who loves us so much....who has done so much for us....I had faith in Him....in His plans.....It all seemed great..

Adalyn's first "selfie"

But I failed to fully grasp of His importance in my life. I guess I never truly understood how much I needed Him. I needed Him to pull me through the moments when I felt at the thread end of my rope. I needed Him to give me courage. I needed Him to show me hope when I couldn't see it. I needed Him to help me feel like I was enough to face this.

The ultimate father.

I am so blessed, my friends....to have so much love in my life. There truly has been so much good in it...even with the hard.

David is doing and feeling so much better. Adalyn is growing and growing, she is over 10 pounds now! She is so special....so loving. The moments of her staring right at me...in quiet wonder melt my heart. We are blessed to be able to stay in the basement apartment of my in-laws....to have them so close. I cannot even being to describe how thankful we are for their love and support each day. Adalyn has been put on another seizure medicine and we are holding to hope that it will begin to control her seizures.

This week we are headed back to Northern Utah for a few of Adalyn's follow up appointments.

Again to all of you Dads out there.....I hope you know how much of an impact you have. All the good you do. And the way you change lives for the better. You are not just wanted. Your love is needed in every moment. 

Coming Home.

Well.....it's official my friends.

We have left the hospital! This post comes to you right from the living room of home. 

This week has felt so surreal. There were so many moments where I felt like the hospital really going to be our "home." To be able to buckle Adalyn in our car and drive away was the absolute best feeling. For over a month I would see new little families take their babies home...and felt so jealous and happy that they were able to take their baby home. This week was our turn.

The morning we took her home, I thought over and over about our time in the NICU. It was hard. Physically, emotionally, and spiritually. However.....I will be forever grateful for the absolutely amazing people we met there.

For example....Meet Elisa, our nurse practitioner. She was with us from Day 1.....right after Adalyn was born. She impacted our lives in so many ways....and we are better off because of knowing her....and for all of the things she has done for our little girl.

Some of our nurses and Occupational Therapists....which I kick myself for not getting pictures of...also impacted our lives so greatly because of their big hearts. For being there for me on the days that I was a mess of tears.

The past few days of being home have been beautiful. Yet so many parts of me still feel so afraid. 

It is so hard for us to watch Adalyn continue to have seizures. To wonder if any medicine will be able to work. To sit back and feel so helpless.....and pray and pray that she comes back out of it.

I am afraid at times....of thinking of the future. Wondering if we will ever find that sense of "normal" again. Wondering if I will always be paranoid to even walk out of the room....without a fear of what will happen if I'm not there. Or waking up in the middle of the night hearing her oxygen monitor beeping and my heart sinking...wondering if it is yet another seizure....or is she just kicking her feet around?

This picture melts my heart!

I find myself still mourning the life that Adalyn won't be living......mourning for the questions that remain unanswered. Will she be able to run through the sprinklers? Blow bubbles and eat otter pops during the summer? Build snowmen? Dance around in the rain? Walk? Run? Ride a bike?

I know those are silly thoughts.....but they are at times the type of thoughts that haunt me in the middle of the night. Or cause me to sit in the closet and cry....until my amazing husband comes to find me...and cries with me. 

Recently, I was reminded of something David said to me on the day we got married. We were sitting next to each other....right before the ceremony and David took my left hand....twirling my ring around. He asked if I knew why he picked my ring. I think I expected some witty reply....I shrugged my shoulders and laughed..

He looked at me and said....."We are like the pieces on the outside.....and God is the center. As long as we keep putting Him first....we will have forever. We can get through anything."

I have thought of that each time I have looked at my hand this week.

Trails test you to your absolute limits. I have prayed with angry hot tears streaming down my face. I have prayed with tears of gratitude. I have prayed questioning His plan for us. I have prayed truly wondering if we could get through this. I have prayed for each happy moment of pure peace we have had with her.

Having Adalyn in our lives has brought us to our knees more than I can count. Having her in our lives has made us seek daily to be better. To be better for her. To be the best parents we can be in facing this situation.

We are far from having this all figured out. Going to the store by myself to by a few groceries was such an odd feeling. We still haven't yet got all the way up to cooking our own dinners yet. That sense of normal hasn't kicked in. Hopefully by next week! For now...we are so thankful for his lovely sister Heather in feeding us amazing dinners.

Baby steps.

For now, we are trying to be grateful for the moment we are in. For the moments we can kiss her sweet cheeks and toes. For the moments I get to watch David tell her stories.....or work on "bicycle kicks" with her. For the moments that we get to sway her to sleep in our arms.

Those moments are too beautiful to capture in words. 

It is in those moments I know that somehow, this will be okay. As David reminds me, God's plans are eternal. Often we are only seeing one piece in the pattern. Someday, we will get to see the whole masterpiece.

Just because it is complex, doesn't mean it has to be awful.

Her first time outside...and she snoozed through it!

\

Best afternoon!

This is what it's all about folks

I know I have posted this before...but this song is sums up so much of my thoughts. It is beautiful! And helps get me through tough moments!

Thank you all again for so many countless prayers on our behalf.  They truly have carried us through and strengthened us.  We have seen so many tender mercies as a result.

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. 

Blog Hacked! Ah ha!

Sooo this is David and I just hacked into your blog!  Honestly, it was a lot easier than I thought it would be.  It was totally opened up and everything when I checked the laptop.  But I wanted to leave you a letter that you would eventually find at random.  The letter is from me and it describes a lot of how I feel about you lately.  It is not everything, because there are words that are not made yet to describe some of how I feel about you.  I hope this brings you comfort if you are feeling down next week:

"Dear Amanda,
Just like how we are in awe at the world God has created for us, I am in awe at the incredible woman you have become.  I've known you for a few years now, married for 2 and a half, and at first you were a cool girl that I wanted to get to know.  Cute, nice and someone I could easily talk with.  Then you were the girl that was really fun to hang out with.  Adventurous, wasn't shocked by crazy things.  As we spent more time together I slowly began to fall in love with you until I realized I couldn't live without you.  I was in Las Vegas and only missed you.  We did some amazingly fun things together during our travels around different cities.  We also lived with each other at the best times of our lives and our absolute worst.  We have done some very HARD THINGS.  I think we've seen each other at our most vulnerable moments and have demonstrated love to grow closer than further apart.  You have shown me love even when I felt like I didn't deserve it (like when I crashed the car, or failed a test or get hospitalized... oops, etc.)  I love you with all my heart.  Don't be afraid for me.  I am feeling great!  I should be the one taking care of you, because I love you.  Now, I watch you hold our daughter in your arms and it is the most beautiful thing I have ever seen.  Truly the two creations of God that mesmerize me with the most awe.  I feel blessed to have you by my side forever.  

With love,
David"