Blog Hacked! Ah ha!

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

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

With love,
David"

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! 

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..