Still Standing..

**Disclaimer...the first part of this post isn't written with the intent to make any feel sad....or feel sad for us! We truly are blessed. Writing tends to be the best way I process. With that...I include the good...the bad...and the in-between.**

The hardest question to answer as of late is "How are you guys and Adalyn doing?"

As soon as someone asks us that.....my mind goes over a hundred different thoughts.

Do we tell them how awful her spasms are now? How they make our stomach churn and our hearts hurt to see her little body contorted....face pained....and breaths coming out in gasps? Do we tell them that she seizes so frequently....that at times she has a seizure and a spasm at the same time and is jerked from one to another for several minutes?  Do we tell them how if we get 4 hours of sleep at night....the night was good? Do we tell them how she can't really sleep for more than an hour without having a seizure or spasm? Do I tell them how when it is my turn during the night....I literally rest with one eye open...staring at the monitor.. watching her heart rate...ears peeled listening for any stop in her breathing? Do we tell them how scary it is to face each week....wondering if things will continue to get worse for her? Do we tell them how frustrating it is to make decisions of medicines to put her on....knowing the harsh side effects? Do we tell them how hard it is...knowing that if we can't get these seizures and spasms under control....they will continue and progress and worsen until her little body physically can't take it anymore? Do we tell them that as much as we try to push these thoughts away.....we wonder if she will truly make it to her first birthday? Do we tell them how we can go from feeling pure joy and happiness.....to complete defeat in the same day? Do we tell them how hard it is watching her loose the abilities she has gained?

Like I said.....a hundred different thoughts.

So tired!

Instead of letting that dam of emotions spill out....I tell another truth....

She is growing. She is so adorable. She is incredibly strong....and faces all that she has on her plate with more grace than I could ever fathom to have. Even with having such frequent seizures and spasms.....she doesn't cry. Her eyes well up with tears at times....but she endures it.  She has enough love in her little fingers alone to lighten up a whole room of darkness and touch the hardest heart. She keeps us strong each day. She makes us laugh when we feel like crying. She gives more to us than we could possibly ever give back.

At times, being up with her in the middle of the night....have been some of the most spiritual moments of my life. 

Lately....I have been feeling a little bit like Peter in the New Testament. He and the other apostles were in a boat in the middle of a fierce storm. Stresses were high. They weren't certain if they would make it....when suddenly they looked out...and saw Christ standing on the water. Peter was immediately comforted. He knew everything was going to be okay. In his excitement....he left the boat to walk to his Savior. However....after a few steps... the howling wind and the waves around him filled his heart again with fear. He began to sink....crying out once more to Christ. Without missing a beat...Christ was there....to again pull him to safety. 

So many days I can see the hand of Christ in our lives. I am comforted. Yet...there are so many moments where I see the storm around us.,...I think of all that we face....all that Adalyn faces...and I feel myself beginning to drown. I loose sight. It takes daily effort to seek His hand. To find the comfort that we so need.

There is so much I don't understand.....sometimes I let my mind run wild with all the moments we might not have with her....will we ever hear her giggle? Hear her say mom and dad? Teach her all about princesses and superheros?

I have come to realize that those thoughts are a vicious cycle. It is pointless...and takes away from the here and now. We have both felt the importance of enjoying each moment...even the hard ones. 

I soak up each moment of holding our sweet girl. My heart feels with more love than I can ever describe when she lets out a long sigh while she sleeps. I can't help but smile like a kid on Christmas after giving Adalyn a massage and she is so relaxed and drooling as I rub her hairy little back. I laugh as she lets out the stinkiest toots you have ever smelt from a baby. It makes my day to hear her occasional little squeals....like she is trying to have a real conversation.

Seriously....so relaxed. How can you resist that hairy back! 

I realize more and more each day that this life is but a moment. A long, beautiful and hard moment. The moments in this life are fragile. They easily come and go. The amazing thing is that this life is only the beginning. The hard moments will not last forever. The good moments will become greater. All that is unfair about the here and now will one day be fair.

So until then....soak up each moment. Enjoy every smile. Don't be afraid of letting your tears out. The hard things you face will teach you greater levels of compassion then you can imagine. 

Tender moments! We are so grateful for their help....and being babysitters as we nap.

In taking care of Adalyn...I have truly felt that very thing. I have learned greater depths of love and compassion. Sometimes....I think I am giving every ounce of strength I have in making sure we are doing all we can.....I fail to see that I am getting so much more back. I now read stories or hear about others facing hard trials and my heart stretches for them in ways that it never did before. I find myself loving strangers so completely...and rooting for them in their own hard trenches. I find that my heart overflows with love for my husband and my family

So we keep going. We keep holding on. We keep believing. We keep loving. 

Adalyn has officially been off of steroids for a few days. We will wait another week before starting another. This new medicine that we may try has some pretty harsh side effects...one of them being vision loss. We continue to pray that she won't suffer the side effects of the medicines that she is on! Several different people have sent us links about Cannabis oil....we thank you for thinking about us! We want to try it.....however...it isn't FDA approved. Before we can try it....we have to try all of the medicines and treatments that are FDA approved before we can qualify for it.

Adalyn's activity gym that her vision therapist made for her

We can never thank you all enough for your continued prayers on our behalf!


We have an amazingly sweet friend that sent us a children's book....the following is taken from it. I have teared up so much in reading it... .To our sweet girl....you will be 4 whole months this week! This is exactly how we feel about you! Never in a million years would we trade away one second with you.

"Never before in story or rhyme (not even once upon a time) has the world ever known you, my friend, and it never will, not ever again..... Heaven blew every trumpet and played every horn.....on the wonderful, marvelous night you were born."
-One the Night You Were Born, Nancy Tillman

Choices.

The year 2015 was going to be our year.

David was graduating. We would be moving to a new, permanent place. We would have a new baby. David would start a new job. Everything we had been aiming for was finally going to be happening! We had a plan. Things would all happen in steps. It was all going to be incredibly exciting. It was going to be easy!

Now as I sit here and reflect..... Nothing seemed to go according to plan. David did graduate. We did move. We did have a beautiful new baby. But none of it happened as I had imagined. It has been hard. It has been the most soul-stretching few months on my life.

The first few weeks we were home from the hospital were the hardest for me. I felt like I was trying to run a marathon with my shoes glued to the ground. I was grieving. I was afraid. I felt so unprepared for our future. Some days it seemed that my eyes had sprung a permanent leak. I wanted.....I ached to find peace.

In the past two weeks I have realized, in part, why everything was feeling overwhelmingly hard for me.

My mind was in this negative cycle. I was so hard on myself. I kept questioning everything. I saw so frequently the hard aspects of our life.

I was choosing to feel that way.

So. I have been trying with all my heart to change. We have a choice when we face trials. We can choose to find gratitude. We can choose to face our seemingly insurmountable giants saying...."Today I can try."

We can choose joy. 

This girl loves her daddy so much! Finally able to catch a smile!

In the hard moments......I repeat that in my head a hundred times. Choose joy. Choose joy. Choose joy. 

And you know what? It has helped me so much. I feel my Savior holding me up. I feel that I can bear my burdens. I feel more patience. I feel hope. I feel that I can continue working to be the best mom for our sweet girl.

Bath time!

As I stare at her....I am in such awe of her. She is officially 3 months old today! How did that happen?? This perfect little soul has taught me so much. I am so blessed to get to be her mom. Not many people can say they get to hold a little angel each day. To hold a little girl who will remain perfect and sinless her entire life.

Last week was a big week for her. She had 6 appointments at Primary Children's. Audiology. Ear Nose and Throat. A swallow study. Neurology. Surgery follow up. And the comprehensive care clinic. David and I had been so nervous on the drive up there. Especially for the swallow study and the ENT doctor.

We had been told that Adalyn is at risk for loosing her ability to swallow around 4 months. If she was starting to loose that ability, we would see it during the swallow study.... she would be aspirating everything. We had decided that if her swallowing was worsening, we wouldn't proceed with the plans of fixing her lip and palate.

As the swallow study came, we received relatively positive results! Adalyn's swallowing is slightly stronger than it was during her first study. Meaning that her slight aspirating is likely because of her palate and not neurological.

We were so happy! Also....we found the humor in Adalyn falling asleep right in the middle of the study in the X-ray chair. Our sweet girl was so exhausted. She hit her wall....and there was no arousing her.

We were also pretty nervous for the ENT visit, (ear, nose and throat). Here....they were going to scope her respiratory tract and check to see if proceeding with the surgeries would make it harder for her to breathe.....and to check her muscle tone. The doctor, who we loved, told us he feels it would benefit her more to proceed with fixing it.

Celebrating on the 24th! I don't think anyone ever wore a bonnet better. 

Another wave of relief! Yet...I've also found myself feeling nervous. In my mind.....I had ruled out these surgeries. Already, imagining her having to go through surgery again makes my heart ache. But I know these surgeries will help her so much. Especially the palate. It is hard to watch her struggle with so much mucus on some days. And to swallow without a palate? Seriously. Hard. Try swallowing....and then be grateful for your palate!

The rest of her visits flew by. So much information.

We visited with her neurologist....who we also love. She reminded us how unique Adalyn is. There is no other baby with her set of neurological anomalies. We made a plan for trying to get her seizures and spasms under control. We will be starting a round of steroids next week.

Every part of me had originally wanted to avoid the steroids. We didn't want to put her through it. However.....because of the past week...I am so eager and prayerful for this round of steroids.

Adalyn's seizures and spasms have increased significantly. Likely because she has a cold again. She has been having over 30 a day.... It makes us feel so helpless to be holding her...and watch her little body go limp. And just wait for her to start breathing again. Or to watch her go into spasms over and over and the pained expression on her face.

Because she has been having so many.....she has again become very sleepy. Our beautiful awake moments with our sweet girl being alert and happy are less frequent. Her squeals and smiles have also lessened.

So....we are praying so much for this steroid course! She will be on the steroids for three weeks. The steroids will suppress her immune system....so that means we will be even more hermit-like for the next couple months! To get even a cold while her immune system is suppressed would be very hard for her. In preparing us for the winter months....we were reminded how important it is for us to keep her out of crowded places.....to avoid being around lots of other even slightly sick kids....and stay up with all of her vaccines and our own. No pressure, right? It makes me feel like carrying a lysol bottle around with microscope goggles and attacking every germ I see. Too bad those don't exist!

Phew. Hopefully you made it this far in reading.

Overall.....we are continually carried. There is no way David and I could do this without the support and prayers of so many. Thank you again for your prayers, messages, comments, texts and phone calls. We truly are SO blessed each day with so much good.

The past week, we met with an amazing couple we had met in the NICU. They have recently lost their beautiful daughter. She said somethifng that has stuck with me.

We won't just survive through hard trials. We will thrive again. 

And so that is what I am ending with.

We will thrive. We will keep choosing joy. We will seek for it.....even during the days when the clouds seem dark.

Happy 3 months Addie Grace.

Thank you for choosing us to be your parents. To let me be your mom.

Thank you for bringing more love into my heart than I ever thought possible.

Thank you for being our strength.

Thank you for still loving me....even though I can never seem to get the lyrics right for the songs I sing you. Good thing you have Dad!

We love you more than words could ever convey!

Oh how I adore this hairy little back!

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. 

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!