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.

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!

Milestones.

Some days....I forget there is life outside of the NICU as of late.

We have been here for 16 days. Which...in retrospect...doesn't seem like much. After all, some parents are here for months.

Today though, I am grateful for milestones and miracles. 

Milestone #1 
Our days begin by 7am as we head to be to the hospital in time for Adalyn's first feeding. Our conditions for going home all depend on her feedings. We pray with all our hearts that she can work up to taking all of her feedings orally...and not through her N/G tube.

For Adalyn, this is a giant mountain. She has a bilateral cleft...which means her nasal cavity and mouth are all the same opening.

However...they have a special bottle for babies with cleft palate. And despite all odds...Adalyn is doing awesome with it! She is up to 30% of all her food by mouth...which is HUGE!

She works so hard. Eating from this bottle isn't easy. She has to take breathing breaks and make sure she swallows down her throat instead of pushing it up her nose. She also has to avoid her N/G tube and oxygen cannula to be able to get the milk. Even with all of these obstacles.. she is doing great. Improving and getting stronger each day!

We have no doubt that she can get up to full oral feeds. We believe in her so much! Though if she hasn't made it to full oral feeds by the end of this week....they will put a G-tube in her stomach.

This will help us to go home....and then if that is the case...we will continue to work on oral feeds once we are home. We know the G-tube is a possibility......but my heart aches at the thought of it. We don't want to have to watch her go through surgery already...

So....we continue to pray. Miracles happen every day. The fact that she is already doing so much is impressive to everyone. Even her nurses cheer her on.....I love it.

Adalyn has what I call true strength. She inspires us each day. She reminds us that we can do hard things. That giving up is not an option. She presses forward. Even on the days when they have so much tape on her mouth..she works on the bottle. Not only is there tape for her N/G tube...but also for her oxygen cannula. They have also started taping her cleft lip. This is to begin stretching the tissue...eventually for surgery. 

The first time they applied the tape for her cleft....it was a little sloppy....though even with tape all over she still looks so cute!

Milestone #2

David....or as I should rightly say...Dr. Brown...has graduated from physical therapy school. He officially has his doctorate degree. I am so incredibly proud of him! He has spent countless hours the past 3 years learning...working...learning...stressing....and learning some more.

The past two weeks were especially hard with David having to be in Vegas for part of the week.. Not just dealing with school....but also having to leave Adalyn and I here...knowing we would be facing hard days without him.  I will forever be grateful for his classmates and our friends who gave him a place to stay....made sure he ate....or simply just cared enough to be there.  

David drove back up to be with Adalyn and I on Friday....Missing his graduation ceremony. Still thinking of that...part of me is sad. During PT school...I looked forward to seeing him finish. To watch him walk in those cheesy graduation outfits.....cheer him on.....and snap a million pictures. But because David has the biggest heart of anyone I know....He spent his graduation day with me and little Adalyn in the NICU.

This is what our days sometimes look like. Melts my heart. 

That night after we left the hospital....we held our own mini graduation ceremony in our room....Towels for his cap and his NICU lanyard for cords....with me humming the tune for the walking progression... and giving a mock "dean" speech.

It is safe to say it definitely wasn't as fancy as the real things... but at least we got to be together. Each day I am coming to realize that life doesn't go as planned. Having our little Adalyn didn't happen as I had planned. David graduating didn't go as planned...

However...I have also come to realize the beautiful moments in the "unplanned."  Sure it is hard....it throws you for a whirlwind as you try to regain even just an ounce of balance....

But in the moments I watch David and Adalyn doze off together.....or watch as she stares with wonder at her little world.....or feel her little hand squeeze my finger....It is all worth it. It is beautiful. 

It helps us hold to hope. 

We both long for the day we get to leave. We long to start being a family...just the three of us....without beeping monitors....faces full of tape.....and cafeteria food.

But we are trying each day to be grateful for the here and now. We try not to let ourselves be scared of whatever the future may bring.

We have been strengthened so much from all the support and prayers on our behalf. After sharing our last blog post....David and I felt overwhelmingly humbled and grateful as we read through such amazing comments and through the messages we received.

Never in a million years would we have expected to feel carried by so many people. By strangers....friends....family.... We are in awe and more thankful than words could ever describe. We see the answers to so many of your prayers daily.

Life throws lots of curve balls. But I see every day that God will never fail to send you the strength you need to keep moving forward....even when you feel your legs are too weak....too exhausted....

He is in the details. It's us that just have to remember to look.  As my sister frequently says....He will give us the grace we need to get through.

She definitely has her daddy's hair! 

Our Ray of Light.

Hello world.

Meet Adalyn Grace Brown. 

Born May 2, 2015. 7lbs and 8oz. She is our miracle in absolutely every way.

When I was about 24 weeks pregnant, we began finding out the problems that our little girl may face. Though....I won't expound on all of that. To read from the beginning, you can click this post .

We were told that because of her little brain, there were many unknowns about her birth. They weren't sure if she would be born breathing.....or if she was....would she have the ability to remember to breath on her own? Would she be able to have the ability to eat or keep down her food?

Miracle #1
As soon as Adalyn was born....all I could think was "Breathe! Is she breathing?!" Then I heard her little wail and wanted to burst into tears. Squeezing David's had, we both knew God was in charge....angels were present. 

She was immediately taken and handed through a window to the NICU. As the minutes ticked by, I grew more and more anxious.

 Miracle #2 
The NICU doctor came in smiling. Adalyn was holding her own! She is a fighter, and was stable. David was able to go back with her.

Miracle #3 
She was sucking a binkie right off. Despite her little cleft palate....she was rooting and sucking! A reflex they weren't sure she would have. Her APGAR scores were normal.

I couldn't see her for a little over an hour after she was born. I felt so anxious! When they finally wheeled me back....my heart was bursting. Seeing David hold our little girl.....who was alive...who was doing great...I didn't know it was possible to love so greatly in one instant.

In that moment, I had such comfort. In that moment, we were all three strong. 

Miracle #4
Our little Adalyn was able to keep her food down. They had put her on a feeding tube, but all was going great. Soon she was moved to the most stable section of the NICU.

Miracle #5
Adalyn was born on a Saturday. Little did we know how much we would need that peaceful weekend with her to prepare us for the upcoming days filled with doctors, tests, and more emotions than I could process.

Monday is when the whirlwind began. Neurology had their MRI. X-rays were taken. Blood work done. And a new IV had to be placed since her first one didn't last very long. (They had placed her on precautionary antibiotics since I was in labor for so long).

Watching them take her for the MRI was hard. At the time though....David and I felt hopeful. We were certain her scans would look better. After all...she was doing so good!

Taking her for the MRI to the other hospital

Soon after....the neurologist wanted to meet with us to go over her scan. I think I was incredibly unprepared. Like putting on a swimsuit expecting sunshine.. and walking out into a giant blizzard. The neurologist began....aside from her brainstem....pretty much every aspect of her little brain is affected in some way. Much more global than we ever imagined. Outcomes....life expectancy....problems that could arise. I suddenly felt like I was drowning. I was trying not to fall apart. Trying to some how keep my voice from wavering. It felt like the only thing keeping me a float was David's hand. It was single handed the hardest moment of my life. I felt like my heart was shattering...and the pieces flying all over. 

David and I went into a room and held each other and sobbed. Our hearts ached so deeply. For a while,.. there were no words that would come out. Just tears. How could we ever face this? Our little girl is so  perfect. So beautiful.

That evening, I was also discharged from the hospital. We were leaving without our baby. Trying to process an ounce of our day was too hard.

Through those days, were carried by strength other than our own. Holding our sweet little Adalyn, we were stronger. She is our inspiration. She is the biggest and most stable baby in the NICU. She takes feedings like a champ...Not to mention, she is working on bottle feeds. She continues to defy predictions daily.

Miracle #6
Throughout the week, we made it by seeing so many tender mercies. David had to go back to Vegas to finish classes. Seeing him leave was hard. I wanted to somehow just send a clone of him down there so he could stay with me. I was afraid of facing the rest of the week without him. It was hard, because I wanted to be selfish and keep him with me. But it was even harder knowing the burdens and stresses he felt on his shoulders.... Leaving me and Adalyn at the hospital, driving so far, school, graduating...the unknown that lies ahead.

Lucky for me....I was so blessed while he was gone. Through many prayers, amazing family support and a sister who was like a super hero...keeping track of me...what I needed...making sure I ate and took my medicine...being there to laugh and cry with me.

The rest of the week has been a blur. I have felt moments of pure happiness. I have felt overwhelmed with gratitude. I have felt so humbled.

I love this hairy little back!

After seemingly a zillion other doctor visits....we had more news to process.

Miracle #7
Adalyn has vision in her right eye. She may have some in her left, but the eye is too small to open currently.

Miracle #8
Adalyn had been on an IV since she was born since I had been in labor for so long....they wanted to do a 7 day course just for precautions. However, they struggled each time with the IV. She was poked so many times! They even tried to do a pic line twice and failed. By the fourth day....they were grasping at straws trying to find a place to poke her. Right as the nurse came to do an IV...one of the doctors came to say that she didn't need the rest of the course...meaning no more IV!

This is her "I hate IV's!" face

With David in Vegas,,.,,the days seemed much longer. So many doctor visits. Times of feeling like a terrible new mom. And times I felt my strength draining.

One particular day...genetics came to talk to me. They had a syndrome in mind....but they weren't really sure. It doesn't quite fit Adalyn...but they can't find anything else. There is no specific test for it...so they can't be sure....and it is a spontaneous thing. Again....the doctor went over life expentancy..future predictions...on and on. Yet also reminding me that it has just as high of a likelihood of being this syndrome as it does of not being this syndrome. (So you told me all of this because..? Was sort of how I felt)

Again that evening on the phone with David...I cried. I just wanted to take our little girl home! Away from beeping monitors....wires....doctors...all of it. Never in  a million years would we have wanted her to endure such hard things. 

Yet now, as I sit here and write this....I am reminded that God is in charge. This has been the longest....hardest...week and a half of our lives. However...David and I have decided that is Adalyn was brave enough to come here knowing the challenges she may face...then we could be brave enough to be her parents. 

Having David back for the weekend was like getting re-charged with hope. Together...and through the Christ....we can keep moving forward. Adalyn loves her daddy so much! She falls asleep in an instant in his arms....and loves to hear him sing. We has also decided that Adalyn is her own kind of special. We feel so strongly that she is here for a beautiful purpose. We don't know what the future will bring, but we will hold to hope.

And as one woman said to me this week hope goes farther. 

We will learn and grow as she does. Even with her many anomalies...the doctors and nurses are so impressed with little Adalyn. She has already exceeded so many expectations! Once we get her feedings in a good place, either completely on the bottle or at least half....we will be able to take her home. I already long for that day! One day in the NICU feels like a hundred.

Despite the challenges this past week has brought...there have been moments of beauty and humor.

Like how frequently Adalyn explosively poops right in the middle of changing her diaper. Or the quiet moments of singing her to sleep. The exciting moments of being so proud when she accomplishes something (like drinking from the bottle). The beautiful moments of her staring right at us....and feeling like she is looking right into our soul!

Becoming a parent is still surreal. We continually pray for Adalyn. That she can be strengthened. That she can have the best life we can offer her...That she can continue to be our little miracle.....And that David and I can be strong enough to make the right decisions.

Our lives are changed for the better because of her. We are so blessed to be her parents! Even though it has been hard....even though our hearts have been pulled in more ways then I could have ever imagined...even though at times we are scared for the future....We know that love is greater. Love is powerful. And we wouldn't trade that love for anything in the world.


We have seen more miracles and tender mercies this past week than I could ever count. I listed only a few here. Prayer is powerful. God is in the details of our lives. We have to take each day as it comes for now,,,,the good and the bad.

It is hard. Really hard. I never thought that I could have so many tears readily at hand, So many aspects of our lives are changing.

In these moments...I remind myself of a scripture David read to me....

2 Timothy 1:7
 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.

And part of this talk from Elder Whitney Clayton

All of us will, at some time or another, have to traverse our own spiritual wilderness and undertake our own rugged emotional journeys. In those moments, however dark or seemingly hopeless they may be, if we search for it, there will always be a spiritual light that beckons to us, giving us the hope of rescue and relief. That light shines from the Savior of all mankind, who is the Light of the World.

Thank you for so many prayers on our behalf. I apologize for those who have reached out through text....phone...or messages. We have been rather terrible at having our phones. 

Most of all we are blessed. Blessed to have our little Adalyn Grace. The brightest light in our lives. She is beautiful in every way..

Jump.

"Are you scared?"

I was recently asked this question at church by a wonderful woman who has a son and daughter in law facing a similar situation to our own.

Honestly....yes. 

This is it. This is the week that we have anticipated for the past 9 months. We have felt every emotion possible a thousand different times it feels like....especially these past few months.

I remember back in August....back when I first thought I was pregnant. I had decided to wait until the morning to take the test. I hadn't told David what I was doing....I wanted it to be a surprise. All night long I waited excitedly. By 4:30am.....I couldn't wait any longer....and took the test. Little could I ever fathom how a little positive plus sign could change our entire lives in the course of 9 months. 

I look back at myself in that moment.... Bursting with excitement. Thinking of how I was going to tell David....bursting with more excitement at the thought of telling him....at the thought of him being a dad!

I wish I could tell myself in that moment to buckle up. That this was going to be the ride of a lifetime.

I would tell myself that it was going to be a beautiful ride. We would learn to pray with our whole soul for a little girl that we hadn't met yet. We would find an overpowering love our little baby who had found a permanent spot in our hearts. We would feel humbled. We would at times feel helpless.... but we would never have to face this ride alone. 

Our little girl is already loved so much by so many people......especially David and I. 

Yes.....we are at times scared. Scared at what could happen. Scared at what our little girl may face. Scared to think of the road ahead.

But love and hope help to silence those scared feelings. We are going to be parents. We will get to see our little girl's beautiful face and finally hold her in our arms. She has been our miracle. She has been our light.

So....with that...I try to take a deep breath....(or a hundred)...and jump into this week.

David will be taking his board exams (to top everything off).

We will have to be deciding on  he job offers we have received.

And we have an induction date for this week. No pressure right?? It definitely makes me tempted to stay hidden under a pile of blankets...

I am amazed at David every day. I know he has felt the burdens and weight piling on his shoulders. Yet no matter how hard things have been.... or how emotional some days feel...he keeps walking forward. That, I  am certain, is true strength.

It is okay to be afraid. It is okay to cry. It is okay to feel helpless. But don't let those feelings control you. Christ will carry you. He has felt the sorrows of your heart. He knows the times when you are uncertain of yourself or uncertain of your faith.  He also knows something we forget....that you are enough. No matter if your faith is that of a giant....or feeling like a little seed.....He will take that and turn it into something beautiful if we let Him. He will be the strength that we need to keep walking forward.

The doctors here have been wonderful. Our little girl will definitely been well taken care of. We will try to be posting updates to our blog.....that way it is easier to update everyone at once.

I have no doubt that our lives will definitely never be the same again after this week. 

I cannot thank you enough for your continued prayers. For believing in our little girl.
We can never thank our family (and friends) enough for all they have done. They have truly helped to carry us when we have needed it most. Not to mention....have housed us (remember how we're still slightly nomads?)....have fed us....prayed for us..and so much more.

Here we go!!

Finding Strength.

I sit here staring at the calendar in anxious disbelief (if that combination of feelings even makes sense). Some days tick by slowly....and it still feels  unreal that within a month, we will have our little girl. Other days...I realize how much we have going on this month in addition to our little girl arriving, all of the decisions that lie ahead....and I feel like time is moving on turbo speed.

I am 37 weeks along....which technically means...I'm considered full term. I think of that with amazement.

There were times during these past nine months where I was certain time was reversing itself. Times when the months of April and May seemed eons away.  We had all the time in the world to prepare.

Or so I thought.

Now it's the second week in April....and part of me feels a slight panic. Am I ready for all that lies ahead?? Are we  ready for all that lies ahead?? I think of those questions almost every night.  I stare at the things we have packed and ready for our little girl. I replay a zillion different scenarios over in my mind of possible outcomes.

I feel like I still cycle through so many emotions. There are moments when I am on a high of hope....and certain that all will work out....that we will have our little girl. Sometimes....I even forget that she has so many anomalies.. Then there are days like yesterday...

Our doctor told us she would be presenting our baby's case in front of a team of doctors. Any doctor that may even remotely be involved with her care will be in this meeting. They have to prepare for worst case scenarios.  After that...they will want us to meet with the neonatologist.....to discuss with us those possible worst case scenarios. They will need to know what David and I want to do....should things go wrong...How much intervention do we want? Endless other questions that I (we) don't even want to think about. It brought all of my emotions and fears rushing to the surface.

Leaving our appointment yesterday, I felt like the thin thread that was holding my emotions together was threatening to break.  

Once again...as we got into the car, I sobbed. I felt my frustrated, hot tears continuously roll down my face. How come we have to face this...I kept asking David....How come our little girl has to face this....Why does absolutely everything surrounding her birth and life have to be so unknown...Why does it have to be so hard.....How can Heavenly Father think we are strong enough for this?? Feeling helpless and defeated.....I squeaked out...I just want to be a mom. I want to see you be a dad.

David....as always my anchor....held my hand, comforted me and let me cry it out. We have both gone through these same emotions numerous times.

A few hours later....I read a talk about fear. About turning our fears to Christ. It hit me like a train...and brought me to my knees. There is One who knows the unknown that we are facing (something that I have to remind myself of often). Christ has promised to walk with us through our darkest unknowns. He never fails to send us His comfort. Even during my moments of frustration. Even when I feel myself wavering. Even when I am afraid.

He brings peace. He brings hope. He can hush our fears when nothing else in the world can. I know I am not strong enough to face what lies ahead for us. But I know that Christ is. In His strength, we are capable of facing any trial and overcoming any doubt or fear. I know that God has a plan for us....and a plan for our baby....because we are His children.

And He loves us with a greater love then we can comprehend. 

Our little girl has brought us so much happiness already. She has taught us so much about pressing forward with faith, even when the path is hard and our steps are unsteady. She is continually growing and developing. Every other part of her is doing great. The main worry is her brain.

When she is born....the biggest concern is if she will be born breathing.

Her brainstem isn't affected....so there is a high chance that she will be able to breathe on her own. However....because of the other areas of her brain that are affected...they have no way to be certain. With any one of the areas affected, she could be born with normal neurological functioning....they are just uncertain with her specific combination of anomalies.

So....we pray. And ask for your prayers as well. We pray that she will be born with the ability to breathe on her own. That she will have the neurological functioning she needs to survive and defy the odds that are placed upon her. We pray that she will have sight and mobility. And that when the time comes....they will be able to fix her palate to enable her to eat.

Most importantly.....we pray for His will to be done. Whatever that may be.

We believe in miracles.

We believe in our beautiful little girl. 

I know I frequently sound like a broken record...but we are continually thankful for so many prayers. I have never had my testimony in something so certain. Prayer is powerful.

It has helped me hold to hope. It has helped me continue to believe in our little girl....to believe in her own fighting spirit. To believe that she can overcome the trials she will face. It has gotten me through a number of sleepless nights. It has helped me face the normal pregnancy joys of heartburn, back pain, and nausea. It has give both David and I the courage to face the unknown.

Together, with the strength of the Lord, we can face all that lies ahead. He takes each of us....imperfect as we may be.....and shapes us into something even greater. He sees all that we cannot. No matter the outcome...Our little girl, David and I....we are a family.

That type of love is eternal. 

Lifted.

My heart is so full. 

I'm 8 months pregnant....and healthy. 

We have felt the prayers of so many people on our behalf and for our little girl. I wish I could adequately express how thankful I am for the support of so many people. Between the cards, little notes, baby showers, texts and phone calls....I don't even know where to begin to express my gratitude.

Trials come in all shapes and sizes. And I have come to realize how grateful I am for our situation. (Thankful for a trial? I know....I must be crazy...). But we have felt such an outpouring of love...and we have come to love our little girl even more as a result.

After this week, we begin to jump into the sea of unknown that awaits us.  It is crazy to think that within the next two months....all of our questions...all of the unknown we are facing....will have an answer. David finishes his last rotation here...and then we will head to Salt Lake for the last month of our pregnancy to be closer to the doctors working with us. During this time, David will continue interviewing for potential jobs.....preparing to take his board exams....and preparing to graduate.

We know the outcome of our little girl's life is uncertain. We know this could possibly be a long road for her. However....the past few weeks especially....David and I have felt a powerful sense of hope. 

I know some people are afraid of us getting our hopes up too high....afraid that we will be disappointed or heartbroken....

But I have come to realize something. That doesn't matter. What matters is where David and I stand.

Christ's miracles are real. Both David and I have seen far too many in our lives to doubt that. In fact, David's whole life is a miracle....that he is here and healthy and graduating with his doctorate. 

I am sure that when Christ said He could heal the blind.....cause the deaf to see.....or the lame to walk..there were plenty of people who thought it couldn't be done. Not because they were bad or because they didn't want those things to happen....but because it seemed far to great. Impossible even.

Regardless of doubt....He did perform each of those miracles. And because He is the same yesterday, today and forever....I have no doubt that He can perform a miracle for our little girl.

Because He already has. Being pregnant....feeling her move....seeing her (and myself!) grow....is a miracle. Our little girl has a purpose, we know that beyond a shadow of doubt. As her parents.....we will continue to believe in her with our entire hearts.  I am learning more every day what that truly means.

We will also continue to believe that we will be guided to where we need to be. That David will get a job that will be the perfect fit for our family. That he will be able to do all that is required of him the next month and a half.

We will continue to wait in faith. Knowing that we are carried, and lifted. 

So....to all of you who have been there for us...

To our family....who have let us pour out all of our emotions, housed us, fed us, supported us, or laughed with us. To our friends.....who have showed us such unbiased love and kindness. To our ward families, both old and current.....who have kept track of us.....and kept us afloat with their words of support. To both of our bosses.....who have put up with the roller coaster of our emotions....and have continued to believe in us.....To those who have stumbled across our blog and sent words of comfort...

I thank you. I thank you with everything in my heart. You may never read this.... But it is because of each of you that we have also been continually lifted. You may never know the impact your sweet words, prayers and actions have had on us.

Please continue it. It is powerful. And we have needed it. Never underestimate the power of your prayers for others. Prayer never falls on empty ears. There is One who hears and strengthens. 

This video is incredibly powerful! If you have ever had a moment...small or great of struggle..watch this. It is beautiful. 

It was so much fun taking these. Thanks to the lovely Shauna Brown for taking our photos. And for feeding us. And housing us....

The list could go on and on! 

I am one lucky girl!

Remember how we think we're funny? David's face kills me....with that much excitement....our little girl couldn't be loved more!

The best thing about this next month will be in seeing David be a daddy. He will be the worlds best. Hands down. He already does so much for us!

Learning Trust.

Pregnancy for me has been a beautiful thing....but it has also been hard.

In almost every aspect....emotionally, physically and spiritually. The past week was one of those hard weeks.

It all started around last Saturday night. It was about my second sleepless night in a row. At about 3 am...staring at the clock....trying to get comfortable for the zillionth time...I lost it. I cried and cried. In my frustration....I started praying. All I kept thinking was.... "Heavenly Father....how is this fair? I am trying so hard to have faith.....to be what you want me to be.......but everything seems so hard.... here we are facing the unknown in almost every aspect of our lives and now I can't even seem to sleep. I am exhausted....this is too much for me. This is too hard for me to do. Where are you?? Can you see that I am struggling here??"

Sometime in the wee hours of the dawn,  I finally fell asleep. The next morning...as I was getting ready for church...I still felt those feelings of frustration. I was feeling....in some ways...alone.

This is where one of those "WHAM" moments comes in. As I sat in the last hour of church....the woman began giving her lesson on Jesus Christ. She talked about Him....His attributes. How He came into this world having a foreknowledge of what He was to do. She talked about how willing He was to take upon Himself the pains, suffering and sins of this world.

She did this in making a specific point. We first have to remember the significance of Christ...which leads to our firm testimony of Him.

Which leads to having faith.....understanding that He has power over all things.... and trusting Him with our whole heart.

There it was my friends. The big "T" word. Trust. There was my problem. Up until that moment...I didn't realize I was struggling with it. I thought I had complete trust in my Savior...but I realized part of me was afraid of trusting Him completely.

I had kept some of the deepest parts of my heart....my fears and desires....and hopes for our little girl and our future locked away. I guess a part of me felt that putting my whole trust in someone else was far too scary. What if that trust lead to my heart breaking?

I had to realize that what David and I are facing, we have no control over. We have to have our complete trust in our Heavenly Father to know He will guide our hearts and our situation. Most of all...we have to trust in His will for us. In this trust....we can find the courage, hope and optimism to keep moving forward. Even if it still seems scary or overwhelming.

My learning this past week didn't stop there.

As the week rolled on....I caught a nasty cold. Which further lead to more sleepless nights. Which again...lead to another 3 am crying spell. This time....my flustered tears woke up David.

I was frustrated. Again. I was exhausted. Again. Uncomfortable. Again. And to top it off...my nose was running like a faucet. My throat was on fire. And I my legs felt like they needed to be stretched out by a steam roller. (Sorry folks....I'm not writing this for you to feel sorry for me...promise).

David is my hero. For so many reasons. That night....was yet another of many nights he has saved me. He rubbed my back and tried to comfort me. He gave me an incredibly beautiful blessing for me and our little girl. But in my stubbornness, I was still holding to that frustration.

After a little while, David had gone quite...and I assumed he had fallen back asleep. Slightly jealous, I stumbled in the dark to go try laying on the couch. That's when I saw David....not in bed....but kneeling and praying. Praying for me. Praying with his whole heart.

WHAM.

Again....I realized....I still wasn't letting go of my trust issue. Yet....watching David... I knew he had. David had that complete trust in our Savior to help me get through these difficult moments. And he loved me enough to sacrifice his own sleep to pray for me unceasingly.

That night, I was finally able to find peace in falling asleep. There have still been sleepless nights since....and my cold and I are still booger-y companions....but through my husband....and some divine intervention from our Heavenly Father....I have come to realize something.

This life isn't always fair. It knocks us down. We stumble. Our hearts can get pulled with sorrow or grief. However, because of Christ's sacrifice for us, the struggles of this life are not forever. In the end, He promises deliverance. He promises that all will be made fair and beautiful if we trust in Him.

Sometimes, He doesn't immediately take our burdens or trials away. But He will ease them. He will be there through every moment. Even if you, like me, can't see or become frustrated. He understands the pains of an aching heart.

The past few months, as David and I have walked this path of becoming parents....in learning of the struggles that we, and our little girl may face.....I have been humbled more times then I can count. I have also felt my heart grow with love in ways that I cannot even describe. I have an even greater love for my husband...who in every moment....walks in faith..and tries so hard to do everything he can to make me happy...comforted..and loved.  Even if that has meant listening to my complaints and giving me endless back-rubs. I have found such a love for our little girl...who...without even meeting her yet...has touched so many lives. We know she is special. She is pure and beautiful and alive. She has brought us closer to our Savior.

So...most of all....I found...it's okay to let it go. To give those deep emotions of my heart over to someone even greater.

And now? Well. I am still learning. I am continuing to believe. I am continuing to love.

Only about a month and a half left until our little girl arrives!

More Than Enough.

A little over a month ago, we were kneeling to pray in the evening with David's lovely aunt and cousins. His cousin began praying.....and something he said has stuck with me ever since. I think of it almost daily.

He said simply..."We are grateful that we have enough."

When he said this....I was struck so strongly by the spirit. Enough. That word seemed to replay in my mind over and over. At that point, we were just beginning to find out all of the news about our beautiful little baby...and feeling so many different emotions.

At the time, I was feeling like there was so much I wanted to be different. I wanted the doctors to find answers. I didn't want our baby to be facing such difficult trials. There were so many things I wished I could change. I think so many of my thoughts began with "I want..."

I was focusing so much on what I wanted to be different....that I was almost forgetting the wonderful abundance of good we have.

Sometimes, in life.....we might not having absolutely everything we want. We may not have the latest....coolest electronics. We may fall ill. We can break a bone. We might not have the perfect job, the perfect home.....all of the money we want.....or the ease of life we think we want.

But.....I know from my own personal reflection, when you take a step back....you realize that you have enough. 

Enough to get you through every day.  Enough to be happy. Enough to fill your whole soul with love and peace.

Heavenly Father has a beautiful plan for each one of us. At times, when we are struggling...it may not seem so perfect. However....if we continue moving forward....we eventually begin to see what He sees. We see the brilliant rays of happiness that enter our life. In the end...His path for us is much greater than anything we can plan for ourselves.

I am beyond blessed to have an amazing husband. (I know...I sound like a broken record.....but I can't ever fully express how much he means to me!) We have a place to live. Food to eat. Goals we are striving for. The strength of our Heavenly Father. We have received an outpouring of love and support from our family and friends.. And we are pregnant with a perfect little gift from God. We love her more than we could have ever imagined!

And for me....that is enough. My cup runneth over.

For those of you who want an update on our baby...we don't have any 'new' news. We cannot completely know the outcome until our little girl is born. Our doctors have been wonderful in working with us. For now, David and I are continuing to trust in God. We are filled with hope. 

There is power is prayer. There is power in believing in miracles. We would ask that you keep our little girl in your prayers! She still has a couple months of growing to do....time for certain parts of her little brain to keep growing. Time for her to defy all kinds of odds.

We love happy, sunny days!

We got the best visit from my sister and her kids!! Oh, how we love them!

We decided to check out lots of books from the library. We want our little girl to know in advance how much she is loved. (Plus...who doesn't secretly love to read children's books?)

As you can tell....I am still growing! There are days when I can't imagine getting bigger than I am now... Things like exercise and sleep are at times a distant memory.

Our Lightning Bolt

Shortly after I posted my last blog....I got a phone call. The doctors wanted to meet with David and I the next morning to go over all of our results.

Every part of me wanted to be so optimistic about the visit....but I felt there was a reason they wanted to meet with us in person. 

The next morning....David and I both couldn't shake the anxious feeling. When we got to the doctors office....I went to the bathroom to pray for the strength to sustain me through the visit. I prayed that whatever was to come....that we could find a string of hope to hold to. Little did I know how much we would need it. 

When they called us back...the nurse let us know the doctor wanted to do one more ultrasound just to get yet another look. Dr. Hales (who has been so great with us) came in and for the next 45 minutes kept looking over her spine and facial features. 

In my mind I thought...."This is a great sign! He hasn't even mentioned her brain." 

After the ultrasound...he told us he wanted to meet with us in the conference room to go over the genetic results and the MRI report from the U. Once we were in the room...a genetic counselor from the U was their via skype....a neonatologist...and Dr. Hales. 

Dr. Hales began reading the MRI report. With every line he read....my heart sank. Her little brain is much worse than we could have ever even begun to imagine. 

Suddenly I felt like my world was spinning. Every part of me had somehow secretly hoped that we would go into the room and they would say..."Well actually...everything looks great! We just looked wrong." 

Instead....here we were. Being told our little girl might not survive for very long. 

We were being counseled about the decisions that lay ahead for us. They told us they wanted us to think about how aggressive or palliative we want to be with her care. 

I didn't even know how to process those words. What was that even supposed to mean? I grabbed David's arm....and tried to fight back the emotions and tears. We needed to hear all they had to tell us. 

The doctors gave us different scenarios of her birth. She may be born breathing....but the rest of her brain vegetative. Or she may be able to breathe....but not have the ability to eat...would we want to keep her on a feeding tube if she is suffering? Or if she isn't able to breath on her own....what would we want to do? On and on it continued....because of her condition....there is no way to be certain of the results....they continued to say. 

In all scenarios they went over...they feel there will likely come a point where David and I have to decide what is enough....and when to let her go. 

Even as I type those words....I can't fully grasp them.. How can we decide that?? I feel like I need a license or something to make that decision. How can we ever be strong enough to say good-bye to our little girl? 

It is so odd...they told us...that every other part of her is perfect. The genetic tests came back normal. There is no known condition that would cause this. They have never seen the brain become so affected the way hers is. Dr. Hayle said....it's spontaneous. Like getting struck by a lightning bolt. 

An hour a half later....We left the office....once again....unsure how to even begin processing. We sat in the car held each other.....and cried. And prayed. And tried to make an ounce of sense out of what we heard. 

In the days that have followed...I think we both have cycled through so many different emotions. At one point....I had reached a level where I was already feeling like I was having to say good-bye to our little girl. I felt like I couldn't wrap my mind around it.

However....because our Heavenly Father is so merciful...He sent me help....through my incredible husband. As we prayed together one evening...David began praying for our little girl. Praying that she would have a fighting spirit. That she would be able to defy the odds that are placed upon her. Praying that as her parents...we would also be able to fight for her. That we could keep believing in miracles.

That hit me like a train. It was possibly the sweetest, most sincere prayer I have ever heard. How could I ever be giving up on our little girl? Of course we would fight for her. Pray for her. Hope. And know that God has power over all things. It is our time to continue to actively trust in Him.

We move forward. We believe in the power of miracles. If the time comes that we need to make those decisions... God will give us the strength to make those.

For now...that gives me hope. Yes....our little girl may be like a lightning bolt. But she is the most incredible lightning bolt to hit our lives. She has illuminated our skies in so many ways. Already....she is a miracle and strength in our lives. Loving her.....praying for her....believing in her has brought me closer to my Heavenly Father. It has humbled me. It has brought me to my knees countless times.

If there are any of you out there who are struggling....if you feel you are hanging by a thread....or maybe you are just having a rough day... Don't ever give up hope. Even if all the signs around you point the other way. 

It is not easy to keep hope. You have to work at it every day. Sometimes even minute to minute. But you don't have to do it alone....God is with you. He weeps with you. He rejoices with you. He will strengthen you. When you have nothing left within you....He will make the difference.

This hasn't been easy for us. There are still so many moments when David and I feel there are simply to many emotions to even process. It is almost a numbing effect. It is in these moments we are carried by His strength. 

There will be hard days ahead.

But there will also be beautiful days.

Happiness can be found even through tears.

So....from now until our sweet little girl comes, we will continue to love. We will love her with all the strength and power of our hearts. 

God is real. Miracles can happen. 

We are so grateful for all of you who have offered prayers on our behalf. There is power in prayer. They truly do give us hope...and strengthen our little girl!

Our journey is just beginning.