Getting Through...

Last week I felt that so many aspects of my little world were simply dangling by a thread. I felt like I couldn't think more than a few hours ahead at a time. For all of you who have shared our story.....who have prayed for us.....visited....called...sent messages...we are so incredibly grateful. Words cannot even describe how much it has meant.

Today we got the most humbling visit from David's classmate Trevor and his lovely wife Kiera. Thinking of their visit we still get emotional. They brought a gift from all of his classmates...I don't know if I can ever truly express how much their act of kindness has impacted our lives. He met some of the most amazing people through the physical therapy program! We are so lucky to have them in our lives.

We don't even know where to begin to say thank you. You all may never realize how much you have helped us...and carried us through your words and actions. We never expected to be on the receiving end of such enormous amounts of love, support and prayers. To be in the situation where we have truly needed it.

After David was admitted to the hospital last week....he lost about 15 pounds of fluid in two days. With all of the fluid off of him...he started feeling so much better! Loosing so much weight that fast though drained him of his energy.. However.....if you ask David...he will always tell you he is feeling good. He is never one to admit when he isn't feeling well.

Since they knew we had a baby in the NICU....and that we would still be around....they discharged him on Sunday and set up surgery for Wednesday.

Adalyn had her surgery to get her G-tube placed on Tuesday of this week. Nothing could have prepared us for how hard that was going to be. How hard it would be to watch her be hungry for the hours before. How hard it would be to watch them wheel her back.......knowing that a little baby wouldn't understand the pain she would later experience.How hard it would be to know they were about to pierce her perfect little stomach. Or how hard it would be to see her recover.

She was intubated for surgery....and they wanted to leave the vent on for 6 hours following surgery to allow her time to wake up from anesthesia and breathe on her own again. It was the most heart wrenching and longest 6 hours. Adalyn began to wake up....and scream. However....because she was intubated......there was no sound. David and I had to hold her little arms down for close to two hours....and watch her silently scream...trying to give her comfort. That image will forever haunt my dreams. We felt so helpless.

The first few hours following surgery.

We questioned everything that night. Was surgery the right thing?? Did we just bring her into this world to suffer? After they pulled the tube.....her throat was so sore.... Her cry wasn't much louder than a scratchy whimper. Our hearts felt again like they were breaking.  Knowing she was in pain. Knowing she still couldn't eat for 12 more hours. Knowing we had to leave her again for the night without our comfort.

It was awful. I would never wish that upon anyone.

The very next day....David went in for surgery. I was a million times more nervous then I would let myself admit. They were planning on exploring around in his heart...and replacing one of the valves. Then for good measure....taking a liver biopsy....since his liver had some damage from the week before. However...once they got inside his heart....they were taken by surprise. (Which shouldn't have been a shocker...David always seems to have that effect of doctors). They saw some other areas that are leaking. So....as a result....they didn't want to fix his valve and in turn cause problems elsewhere. This week they will have a meeting to decide what will be the next best step to take and address what should be fixed. For now though....David is discharged...recovering... and doing so much better then last week. The hope is that we can keep him this way as long as possible and prolong another procedure!

When David was discharged that evening.. I brought the car around to pick him up. As he stood up....I noticed his neck bandage was filled with blood.One of the veins they had gone in had sprung a leak. Of course. Why would leaving the hospital ever be easy?!

Aimee, his lovely sister, was there to wheel him back up quickly while I parked the car again. Luckily....it was a quick fix. He was given a shot to help the blood clot and stop bleeding. Even with that..I was feeling so hopeful. Adalyn was recovering well....David had made it through...and we had a discharge date for Saturday!

Lately....I at times feel just when I get my hopes set on something....things take another turn for the worse.

Adalyn's G-tube site got infected. 

For yet another time.....I had to hold her sweet little arms down as they poked and poked in search of a good vein to start an IV. I never would have imagined that my soul could feel so stretched so often. I wanted to sob with her. Coming back to tell David was another hit. Our hopes of taking her home sailed out the window...for up to another week. It wasn't supposed to be like this. A new baby is supposed to worry only about eating....sleeping....pooping....and getting all the snuggles in the world.

Yet Adalyn's first month has been filled with painstaking test after test. Poke after poke. Beeping monitors. IV's. Assessments. Tears. Surgery. On and on it seems.

Evenings are the hardest. When our thoughts catch up to us.....and the autopilot mode slightly switches off. Seeking understanding is hard. The past month has felt like a continuous battle that we are trying to wage.....A battle that is uphill. In a blizzard. With no shoes on. It has felt like each piece of good news we receive is followed with the bad.

I have worried until I was certain my hair would be white. I have cried until I was certain I could fill a pool. I have felt afraid. And scared. And frustrated. I have wanted to run and hide......certain I was not strong enough. 

Strength. What it all comes back to. What is it? I have asked myself that very question so many times in these past few months. I thought I knew. People have told us lately that we are strong. Honestly.....we don't feel that way. I think if most people saw us all the time...,they would see what a mess we are most of the time.

Most days we just get through. And I have decided that's okay. I don't know if there is any sort of manual about how to be amazingly great or a rockstar at getting through trials. (If there was I would have bought a dozen copies by now).

My sister shared this scripture with me the night we found that Adalyn had an infection:

Isaiah 40:29
He giveth power to the faint; and to them that have no might he increaseth strength.

I have thought of that so frequently. Most days I feel exactly that way.....that I have no might. No strength. I have come to realize that even on the days we are simply getting through....we are only able to do so because of Christ's strength. He is the one that gets us through the tough days....and through the days that we wonder if there really are happier days ahead.

I don't know if understand the reasons why....I don't know that we ever will. I do know however...that because of the past month.....because of Adalyn,....because of all the incredible people in our lives.....we always we have felt more love than we ever knew was possible.  I felt somehow even more love for my husband and the person he is.

Even though it doesn't always feel like it....we know that our hospital days will come to an end. That somehow....there are happier days ahead. Beautiful days. Amazing days that we will get to spend together with our sweet little girl.

For that.....we can't wait. 

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..

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. 

Stepping Forward.

No matter the trial you are facing, the hardships that are placed in your path.....or the courage you feel you lack..... Hope can always be found. 

Life is so beautiful, my friends. Sure it can be hard.....sure there are moments that seem impossible to overcome.....

But you are not in this alone. 

I realize this more and more each day. Love is powerful. Prayer is real.

I think the secret is to keep moving forward...no matter what you are facing. Not every step is easy....I have definitely made my fair share of awkward....clumsy steps...but each step brings something greater...

Like strength. 

Laughter. 

Light. 

Peace. 

 "Believe in God; believe that he is, and that he created all things, both in heaven and in earth; believe that he has all wisdom, and all power, both in heaven and in earth; believe that man doth not comprehend all the things which the Lord can comprehend."

                           Mosiah 4:9