Someday...

I've thought for the past week about what I would write for our update.... I have so many different thoughts these days.... So...this is an attempt to rid my mind of all my muddled thoughts!

I can't sleep well. It seems to be a pattern these days. David and I decided to switch things up a little bit....since we were both rather lacking in the sleep department. Adalyn can't physically go more than 1-1 1/2 hours without seizing or having an awful spasm....so I take the 11pm-5am shift....and he takes 5am-11am. Yet during my "shift" I often can't even let myself doze. I lay next to her....staring at her little body....watching the rise and fall of her chest... Waiting for the moment it stops rising. I then rub her little back....and wait for her seizure to end....and for her to take a deep breath. 20 seconds can feel like a lifetime. I close my eyes....but then I get paranoid...and stare at the monitor...waiting for her heart rate to increase...or for any tell-tell signs of spasms. Anxiety? Yes...quite certainly!

My head is so full of so many thoughts that often I can't seem to shut off. Even when it is my time to be sleeping....sleep is still difficult. There are so many things that I am afraid of. So many things I wish I could change. So many days that I wouldn't change. I have worried so much that I am certain that my hair will be white by the end of the year....either that or I will be bald. (Most likely the latter....it seriously comes out in huge clumps these days!

I am deathly scared of cold season this year. Why? Well....first and foremost....we have been told since day 1 that the likely cause of Adalyn passing will be because of a respiratory illness like pneumonia. This is because so much of her body's energy is spent seizing and having spasms that it makes it harder for her to fight off any illnesses. Comforting, right?

Look closely at the hair! Out of control. Just like her dad's. I love it. 

 I am not very excited for Adalyn to start her new medicine. The next medicine we will try is Vigabatrin. It is a medicine that they suggest after everything else has failed to work. Why is that? Well....because it has quite the handful of not-so-pretty side effects. It has actually been removed from the market a few different times because of the side effects and was just brought back in 2009. Before we can even try it, we have to sign a number of forms consenting to the treatment...agreeing that if anything goes wrong we won't sue..and that we understand the risks. These aren't your average tummy-ache or diarrhea side effects. More like vision loss or subcortical edema (fluid build up in the brainstem)....to name a couple. Yet, if we do nothing, her seizures and spasms will continue to get worse. And if we don't try this medicine....we can't move on to the next possible treatment. It feels like being backed into a corner....with prickly nails.

I am nervous for Adalyn's visits at Primary Children's next week. We will be seeing Audiology, Neurology, Ophthalmology and her comprehensive care doctor. Traveling is hard. The car is pack to the brim with all the supplies we bring. Plus, driving that far while she has so many seizures and spasms is going to be rough. When she has a bad spasm in the car....she doesn't understand why she can't be held. We both are already preparing for a week of minimal sleep. And..as helpful as her doctors are....it is also hard to have visits. It is hard being reminded of how severe her brain malformations are.

As much as I try to push these thoughts away....I frequently find myself wondering "What is going to happen next?" Even if we can get her seizures and spasms under control....no one can tell what her brain malformations will mean developmentally. Each week there seems to be a new level of things that are hard for her.

Visits from Aunt Amber!

I find myself thinking so much about Someday. Worrying about it. Stressing about it. And crying about it. 

We know Someday will come. It feels as if it is standing just outside of the door....waiting to sneak in when the door opens. Someday....days won't be so hard. Someday....Adalyn won't have to face such hard trials. When Someday comes...we will have to say good-bye. The thought of Someday scares me....because when Someday comes, our hearts will break. 

Yet I have realized the more I worry about Someday....I loose the moments of the here and now.

I am desperately holding to the good moments that we have with her. They are more beautiful then I can describe. She fills our world with light and hope. 

I heard a quote recently, "Special challenges allow something special to rise to the surface." I don't think I could put it into better words. This has been the hardest challenge of our lives. Never have we felt more helpless. But in the same hand....never have we felt more blessed.

So many people have reached out to us and helped us in countless ways. Our sweet little baby has touched numerous hearts.....and that is what I am most grateful for. 

The past weekend, my sister came to visit. My niece, Emiliee, who is 10, brought a little gift from her friend to Adalyn. When I read this note from this sweet 10 year old girl who has never even met Adalyn....my heart felt so full. She made the little bow in the picture below. Such a tender gift!

Knowing that Adalyn is touching so many lives with her amazing spirit is what gives me strength. 

She is a fighter. She is full of love.....and endures with such patience all her struggles. Seriously...if I were her... I would be crying ALL the time. When I am around her....and I see what she has to face...I know that I can somehow find the courage to keep going. She has helped me to see that God's tender mercies happen in our lives daily if we will just look. 

Sometimes, as my lovely visiting teachers reminded me this week....God doesn't always take our burdens away. Sometimes we have to keep walking....through what can feel like fire. His promise is that He will help us to carry that burden. Miracles are not always easy....but that doesn't make them any less of a marvel or wonder. These hard trials.... they are but a small moment in comparison to eternity.

Never would I have imagined being on the road we are on. Never would I have imagined seeing the "other side" of life....the side that is completely unexpected. Never had I given thought to all of the times things go wrong during a pregnancy....or the times when little babies are born facing such undeniable struggles.

But the amazing part? Never would I have seen of the pure, selfless love that comes from being on this road. Never would I have learned what sacrifice means. Never would I have prayed for so many families that I haven't even met. And the fellow travelers on this road? Well....they are some of the toughest warriors I know. Each day they have to face their own battles with Someday. And each day their kids stand as witnesses that the most beautiful miracles, courage and love comes in such small bodies.

Being on this road.....we have to fight to continue to see and feel hope.

But as David and I have felt..it's a fight we're not giving up on.

The love we have for our sweet girl is worth it. No matter what Someday brings...the here and now is worth it.

Play time is hard work!

I am slowly learning not to let fears control me. I can't keep Adalyn locked away from the world forever. This day, we braved going to the park, It was a perfect afternoon!

My view as I typed this. Lucky me!

For those of you wondering more about Adalyn's condition.....click here.

When a Heart Aches..

The day after I had the ultrasound where we began finding out the mountains Adalyn would face, I had an appointment with my OB/GYN. David had to work....and wasn't able to come. I was okay with going alone....I knew she wouldn't have any new information. She would just have the report from the ultrasound doctor.

She came in the door, sat down, and started apologizing.

Then she started telling me how she truly thought it would be best if I just chose to terminate our pregnancy.

WHAT?!

I felt like that was an unexpected cold slap in the face. Regardless of what we had found out, there was no way that ending our pregnancy had even crossed our minds. We had already seen her sweet face and heard her little heartbeat.

I said exactly that to my doctor. She stared at me like I was absurd. Her response was letting me know that she was certain that the genetic tests would show a terminal chromosome error anyway (which it didn't). And that even if it didn't, she was certain she would have to deliver a stillborn baby in a matter of weeks. She didn't see too much of a point in continuing our pregnancy.

I was crushed. I was angry. I was hurt. My heart ached so deeply. 

I walked out of her office and never went back.

That moment already seems like a lifetime ago. We were only beginning to realize how much our hearts would ache. 

Adalyn has changed our lives completely. Yes, it has been hard...

It is hard not knowing the amount of time we will have with her. It is hard watching seizures and spasms rack her innocent little body. It is hard to have to plow her full of medicines each day. It is hard having to choose between undesirable medicine side effects.....or watching her seizures. It is hard watching her lose some of the abilities she has gained.

It is hard seeing other babies her age....Not because I am not so happy for those sweet babies...but because my heart aches at what her life won't be.

However....some moments I feel such peace..and I am so grateful for this path. There is absolutely no way...especially now in seeing how special she is....that we could have ended her little life. I am reminded the things we face that are the hardest, are often the most worthwhile. 

I cannot say this enough...Adalyn has changed me for the better. There are moments after she has a bad spasm....or in the wee hours of the morning...when she looks right into my eyes with eyes so full of understanding. So full of love and life. Almost as if to say....."I'm here....and it's going to be okay."

It was an elephant kind of day. 

This past week, I was angry. I know...you may be thinking...."Angry again? I thought you worked through this already!" Well unfortunately, I have to learn things several times.

Adalyn's seizures and spasms have been awful. It has make my stomach churn to watch and my heart heavy. The steroids have made her rather irritable, especially at night. She cries for hours at a time. Just as she finally falls asleep, she is jerked awake by a spasm or seizure...making it take even longer to get her back to sleep.

I felt angry at watching this perfect....innocent girl go through so much. I just wanted the clouds to break for her. I prayed so hard to find understanding. Letting God know the anger that was filling my heart. In my mind, I kept wondering....."How much can one heart continue to ache?"

In sacrament meeting today, I finally found my comfort.

The lyrics for this song came into my mind:

When through fiery trials thy pathway shall lie,

My grace, all sufficient, shall be thy supply.

The flame shall not hurt thee; I only design

Thy dross to consume, thy dross to consume,

Thy dross to consume and thy gold to refine.

(How Firm a Foundation)

In case you, like me, don't know what dross is....I looked it up. It means something worthless.

I was reminded that our struggles are not hopeless or given for no reason. God is with us the entire time. He uses them to refine us. To shape us into something even more beautiful. To help remove our rough edges...to help us....if we let Him....let our light shine.

I have felt that this past year. It has drawn me closer to my faith. It has drawn me closer to my Savior. It has drawn me closer to my husband.

I also read a talk by President Monson. Read the full thing here.

"When the pathway of life takes a cruel turn, there is the temptation to ask the question “Why me?” At times there appears to be no light at the end of the tunnel, no sunrise to end the night’s darkness. We feel encompassed by the disappointment of shattered dreams and the despair of vanished hopes. We join in uttering the biblical plea, “Is there no balm in Gilead?”¹We feel abandoned, heartbroken, alone. We are inclined to view our own personal misfortunes through the distorted prism of pessimism.... 

From the bed of pain, from the pillow wet with tears, we are lifted heavenward by that divine assurance and precious promise: Joshua 1:5 “I will not fail thee, nor forsake thee.”⁷Such comfort is priceless."

Each of us will face those times when our hearts ache. Some days.....I feel that ache is permanent. I am realizing the reason our hearts ache....is because of our ability to love. If we didn't love....if we didn't care....the trials we face likely wouldn't be as painful.

But then what would life be? Love is worth it. It is powerful. So powerful. It brings light...and life...and so much good. The aching pains we may feel....in turn help show us a greater depth of love. It may not feel okay in the moment. You may find yourself punching pillows in anger at 3 am...

Makes my heart melt. Every time. 

Just keep holding on. He will not forsake us. Any of us. There will come a day when all of our struggles...all of our heart breaking moments will be make right...and beautiful. 

I believe that with all of my heart.

So...I will soak in the peaceful moments of Adalyn sleeping snuggled through my arms. And hold on tight to that in the moments that seem too much to bear. I will hold to love. I will try to hold to the comfort of the prayers offered on our behalf. I know we will still face countless moments that threaten to break us...but together...we will find a way to hold on.

24 more days left of these steroids.

I took this video a couple weeks ago....oh how we love this girl! 

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.

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! 

Uncharted Waters.

The unknown. 

It is hard. It is frustrating. It feels like stumbling around in the dark. It is impossible to avoid.

It is humbling.

It can hurt. 

It can be unbelievably spiritual. 

I type these words....... and my mind is whirling over a thousand different thoughts. I needed a space to somehow pour out the worries of my heart.

As David and I wait for news that will have a heavy impact on our lives....I feel like I am swimming in a sea of endless possibilities.....hopes...desires....and outcomes. I have come to realize that the unknown is the hardest thing for all of us. It is one of life's greatest tests to wait. To wait for what you can't even begin predict.

I have plead. I have cried. I have continuously sought for hope.

I have been strengthened by so many prayers. I have felt peace in the midst of what has felt like a tsunami of emotions.

I am certain many of you have been impacted by similar feelings in a variety of situations.... if you haven't yet.....it will come. It isn't easy.

So....the question is.....how to keep moving forward? I've decided that for now....I am going to focus on what do know.

My name is Amanda. I have an amazing, curly haired husband who is my strength in every way. He is my anchor.

I have a wonderful, beautiful little gift growing inside of me.

God is in charge of all things. He knows my heart, He knows the unknown.

And for now......that is enough.