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!