The Undercurrent.

So often my heart reflects back to the days, nights, and weeks this time of year last year...

We had been home for a whole month with Adalyn the beginning of last July. We were learning, along with Adalyn, the best way to handle her feeding tube, oxygen machine, pulse oximeter, suction machine...and medicines.

Her blessing day....July 5th. So perfect.

There were so many many moments when I thought this couldn't all be real. That one day we would wake up, and Adalyn would be seizure free...that all of the other concerns would fade away. David and I rotated the night in 3 hour blocks at that time..That way, we would both get times of sleeping for three hours straight. One of us would get up, begin her feeds....and often simply hold her. Seizures made it hard for long stretches of sleep... At the time, she was seizing about once every 3-4 hours...which seemed like so much. Little could we know how much those awful things would progress.

I can't quite describe the feeling of waking up to hearing her monitor alarming....she would stop breathing for a short time during her seizures..causing her oxygen to dip down low...and then bounce back.

We had her sleeping in the same room as us. So many nights...I found myself simply just staring at her... Watching the color changing night light dance across her sweet face. So often I just rubbed her sweet head...trying to figure out what her plans were for us. Some of those nights are ones too close to my heart to share publicly...

So many times, even in those early months with her...I found myself breaking down....fearing so deeply that our time with her was going to be limited. Sometimes I thought that if I just starred at her long enough....watching her drift back to sleep in my arms...that I could freeze that moment and live in it forever. That I could just forever soak up the peace of watching her eyes flutter closed...feeling the comforting squeeze of her finger..and her breath on my chest..knowing she was safe in my arms... Knowing that my husband was sleeping peacefully on the other side of the room.  There was nothing in the world that my heart wanted more.

Views my heart misses. 

I've  felt myself really struggling as time continues. So many things send me into a panic these days. Never had I known what true anxiety was until the past year.. Now...I know well the creeping feeling of my chest tightening... my heart racing...my thoughts bursting....and my fears completely engulfing me.

I feel afraid of so many things these days. Some of them silly. For example,  I feel like I give myself a pep talk to go out to get groceries. Large social gatherings are hard for me....Something that never used to be. To meet with people, or strangers...and just have small talk seems so foreign to me. It is hard for me to have normal small talk...when everything in my heart doesn't feel normal anymore.

And then there other fears...deeper fears that always seems so close to the surface. The ones that like to play out in my nightmares. One of them hit close to home recently. We learned last month that David's pacemaker battery would need to be changed. For David, this is a pretty routine surgery that he has to have about every 5 years. His heart has to be paced all the time...and unfortunately...batteries don't last forever.

When the lab called to schedule the surgery...for the second week in July (this coming week..)I felt those fearful tears once more burn the surface of my eyes. Of course it would be on the 13th...a day I dread each passing month. My mind wanted to scream...."Why does everything have to feel so hard!" Imagining going back up to Primary's....sitting in a surgery waiting room once more....just felt like one more brick added to my backpack that already was too heavy. 

( As you may have realized, I process things the best through analogies....so bear with me on this one.)

Right now, we are in Spokane, Washington. David has a conference for work for a few days, and I tagged along. I was walking next to the Spokane River yesterday. It looked so peaceful. So calm. Yet...there were signs everywhere that said "Stay out, stay alive." Signifying there was a strong undercurrent...and up ahead, there were falls. 

When I got to the falls..I stood there simply watching for almost an hour. So many thoughts running through my mind. It was enchanting almost...seeing the power, intensity and current of the water. Something that appeared so calm on the surface just minutes before, was actually anything but calm. I felt so similar to the river in that moment. How..often on the surface I seem calm.... But deep in my heart is a intense current of emotions. Fear, grief, longing,worry, anxiety, frustration, distrust, emptiness. All of these feelings swirling around together. Creating a powerful current of their own.

This picture doesn't even do it justice. So beautiful. 

I think, at times, we all have an "undercurrent." Our deepest emotions that lie right beneath the facade of calm we place. I think so often we feel that to show or have these deep emotions isn't okay....or that we shouldn't show them. Yet, as I looked at those falls...there was something so beautiful about the way the water simply flowed...force and all..and just kept going.

As of late my own "undercurrent" has felt like it is pulling me under. Making me feel that I don't have the strength left to swim anymore.

In so many of these moments...I pull up a picture of Adalyn. I see the strength in her little eye. Her bravery. Her courage. Her faith. Her love. And I take one more step.

Of her many gifts....she has always been able to bring hope and strength into our lives.

I am realizing that there are many things that will take time to work through. I hold to the hope that there will come a time when I don't panic so often. When I don't awake at night from another nightmare. When my fears will be hushed. I am realizing I have the greatest force swirling around in my "undercurrent".......Adalyn's love. I know that her love will slowly help to change my "undercurrent." It will change those dark emotions to hope, light, love and trust.

Sometimes, in listening to some people...I have felt like I must not have enough faith. If I had faith, I would be happy. I would be fine with the trials we are going through. I wouldn't feel like such a mess inside. But I am realizing that having faith doesn't mean you are "okay" with what you are going through. Having faith doesn't mean that you have to be happy with what you have lost. Having faith doesn't mean you are never worried, or afraid, or feel lost.... I think faith means that you find the courage to keep taking one more step. No matter how broken or clumsy that step may be...holding to the hope that Christ never breaks His promises.

I think I am learning that it is okay to let myself feel...that I can't listen to what others may say I should be feeling. This is our journey. Our walk. Our road. And though it has been filled with many bumps, steep climbs...and sheer drops....it has also been one filled with the deepest of love. Guided by graceful hands.

I am slowly learning to trust God again with the pieces of my heart. This has been one of the hardest parts for me to learn again. Trust is one I struggle with. I am learning still....that He loves me individually. That somehow....He will help me to carry my backpack of bricks.

I've shared this before....but it has been one I am continually reminding myself of:

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.

Each and every day of my life I will be grateful for the gift of time. I will be grateful for the nights of little to no sleep...For they gave me the chance to watch Adalyn drift off to sleep...and as things became harder...they gave me time to give her comfort and love. I will be grateful for summer evenings...For they gave us time to spend laying on the grass with her. I will be grateful for explosive diapers...for they brought laughter....and gave me a chance to change the cutest little bum. I will be grateful days spent at home, not always showered, with my hair often a mess...and in my pj's....for those were days I got to spend playing with our little Angel. Singing her nursery rhymes, reading books, helping her learn to grasp toys..and simply swaying in the living room. I will be grateful that David wasn't working then....for I got to witness the absolute pure love he has for Adalyn. Time to see the care and love he took in every moment with her.

Slowly I will learn to become encompassed by the good I have. To be encompassed by the love, hope and light that Adalyn knew so very well.

Fourth of July last year

I love you my sweet darling. Oh how my heart utterly longs for you! How I wish I had got to dress you all up for the 4th....and watch your face as you saw all the bright fireworks. So often I feel you near....I know Daddy does too. I had a hard time walking past the giant red wagon slide here...and the little carousal..My heart still longs to do so many of those little things. As I walked around...I looked for you in the beautiful purple flowers. In the silly ducks swimming on the water...In the cool, beautiful air...and the bright green trees. I often find myself talking out loud to you. We pray for you each day...that you always know how special and loved you are.....Part of me feels that you are praying for us too Addie Grace.

I love you always!

You are so very loved by so many! 

We lit fireworks off with you, of course mine had gone out in this picture. I think you would absolutely love sparklers my darling!

When a Heart Aches..

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

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

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

WHAT?!

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

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

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

I walked out of her office and never went back.

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

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

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

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

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

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

It was an elephant kind of day. 

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

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

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

In sacrament meeting today, I finally found my comfort.

The lyrics for this song came into my mind:

When through fiery trials thy pathway shall lie,

My grace, all sufficient, shall be thy supply.

The flame shall not hurt thee; I only design

Thy dross to consume, thy dross to consume,

Thy dross to consume and thy gold to refine.

(How Firm a Foundation)

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

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

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

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

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

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

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

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

Makes my heart melt. Every time. 

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

I believe that with all of my heart.

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

24 more days left of these steroids.

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

Needed.

It's Father's Day.

David and I are still trying to wrap our minds around being parents!

In seeing David with our sweet little Adalyn....I see how incredibly blessed I am to have him. Seeing the way he loves our daughter is absolutely beautiful.

I read a saying recently...

"A daughter needs a dad.....because without him, she would have less of the life she deserves."

I couldn't put it into better words. Without David, Adalyn wouldn't completely have all the love she deserves.....all the hugs, songs, cuddles.....and all the in between. Being a father is so much more than merely a presence.. It is a continual action.

It is a need. 

Not just by Adalyn.....but by me too.

As much as we have absolutely loved being home.....it has been hard in many ways. I have so many days where I feel so completely inadequate to be Adalyn's mom. Of feeling so inadequate and unprepared to face the future.

I have had so many moments of jealousy in ways. Longing for the ability to simply just walk into the next room while holding Adalyn and not having it be a huge packing ordeal. I have moments of fear.....as we are up in the wee hours of the morning...using the suction machine on her because she has gotten too mucusy....afraid and I will do it wrong and make her bleed or gag. Or the fear that comes with her seizures...of watching her stop breathing, her color change...feeling so helpless in waiting for her to come back out of it.

We are still afraid of leaving her for very long.....even if it just means going upstairs without her. I am afraid of her having yet another seizure...and not being there...only to hear the oxygen monitor go off...and feeling my heart sink. I am scared at times in watching her as she is more alert...wondering how things are going to be developmentally for her. Wondering about the time we have with her.

It is in these panicked moments that mind my goes back to the week of having both David and Adalyn in the hospital....the fear of losing either one of them bubbles right back up to the surface and my dam of emotions breaks.

It is then I need David too. His love. The comfort and strength he gives me. In wrapping his arms around me and reminding me that I am enough. That we will get through this together. That it will get easier to bear in time.

Being a father is the biggest commitment. It is life-long. It is demanding. It is beautiful. It requires so much sacrifice....

It is essential.

Last night..... as I tried in vain to rock Adalyn to sleep....Feeling exhausted.....Feeling not good enough to be a mom.....I prayed in defeat....Asking my Heavenly Father how he couldn't see how much I was struggling. Asking him to please help me in some way.....just to see His will. I needed something. Comfort. Peace.....Something to get me through the hard hours.

I realized then how much I have truly have needed Him too.

Before....I have at times thought of God as someone who loves us so much....who has done so much for us....I had faith in Him....in His plans.....It all seemed great..

Adalyn's first "selfie"

But I failed to fully grasp of His importance in my life. I guess I never truly understood how much I needed Him. I needed Him to pull me through the moments when I felt at the thread end of my rope. I needed Him to give me courage. I needed Him to show me hope when I couldn't see it. I needed Him to help me feel like I was enough to face this.

The ultimate father.

I am so blessed, my friends....to have so much love in my life. There truly has been so much good in it...even with the hard.

David is doing and feeling so much better. Adalyn is growing and growing, she is over 10 pounds now! She is so special....so loving. The moments of her staring right at me...in quiet wonder melt my heart. We are blessed to be able to stay in the basement apartment of my in-laws....to have them so close. I cannot even being to describe how thankful we are for their love and support each day. Adalyn has been put on another seizure medicine and we are holding to hope that it will begin to control her seizures.

This week we are headed back to Northern Utah for a few of Adalyn's follow up appointments.

Again to all of you Dads out there.....I hope you know how much of an impact you have. All the good you do. And the way you change lives for the better. You are not just wanted. Your love is needed in every moment. 

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! 

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. 

The Depth of a Soul.

I stare at the computer screen....trying to find the words to convey all of my thoughts.

David and I have decided that we will share this new journey we are on....no matter how hard or unknown it may be. Even if no one ever stumbles across this.....we want to be able to look back and know we were truly be carried by our Heavenly Father. And maybe....it will help just one person on their own journey..

On January 19th....I had special fetal ultrasound done to take a look at our little girls heart. Because my husband has a congenital heart defect....they just wanted to make sure everything was working right. I went in expecting good news.. But as the doctor kept staring at the ultrasound machine in silence.....I knew something was wrong.

As it would turn out.....her little heart is perfect. But her little brain isn't. The doctor struggled to find the words to tell me what he was seeing. Severe brain abnormalities. He had never seen such abnormalities before. Her little spine that is also affected. And....that she has a cleft palate and lip. He talked about other tests that would need to be done. He tried to tell me what he was seeing...but wasn't quite sure himself....  He was unsure of her surviving after being born. Or...what her quality of life would be. Or the thousand other possibilities that her abnormalities could mean.

I can't even describe that moment. I never realized a heart could ache so deeply...that a mind could be flooded with a thousand different thoughts in one mere instant.

I tried to stay strong. I wanted to hear every word the doctor was saying. I fought back the wave of tears that threatened to break through. David couldn't be there...he had to be at work(after all...we weren't expecting anything to be very wrong).. and I wanted to be able to tell him everything. Lucky for me....my wonderful in-laws were there. The doctor stepped out of the room for a moment....and I lost it. I sobbed into their shoulders.

"Our little girl. Our perfect....beautiful little girl...." was all that kept running through my mind.

The doctor came back in to do an amniocentesis....a test that would help them see if this was a specific syndrome on her chromosomes. As the needle pierced into my stomach....it seemed to match the ache in my heart.

The doctor was so kind. I felt so grateful. He promised to be in contact soon....after consulting with his colleagues at the University of Utah.

It was a surreal feeling to leave....to have received such hard hitting news....and yet hardly seem to know anything. In my mind I thought "I can feel her move so much inside me....she seems so complete....how can something be so terribly wrong?"

I called David. And with a teary...shaky voice....told him the news. I knew it would be incredibly hard for him to receive such news at work...  As a tender mercy for us,  his boss (who we are so grateful for!) gave him the rest of the day off...

Right when I saw David walking toward me with red eyes....I lost it again. He held me while I sobbed. For that moment....with David by my side....I could keep moving forward.

The rest of the week was a blur. We waited....praying for answers....praying for peace....praying for understanding.

As some of the results came back....it opened up even more doors of the unknown. A doctor from the University of Utah contacted us to try and go over what we knew. She said they were searching for a syndrome or diagnosis to help us see what her prognosis will be. The hard part....is that there is so much they didn't know. She gave us the hopeful reminder that medicine doesn't know everything. That even if they find a syndrome or a prognosis...there is much room for things to be on either end of the scale. They needed more images...she had said....and further testing on her chromosomes...which would take a couple weeks.

So we were left again to wait. And wonder. We reached a point where we felt at peace. We felt strengthened knowing that God is in charge. In knowing that He can see what we can't. He knows how special our little girl is.

We had another doctors visit this week....an MRI for the doctors to see a clearer picture of her little brain. However..it feels that with each doctors visit...we find out another part of her brain that is missing or abnormal. The doctor promised to be in touch with us again later this week to go over what they find/think about her condition. From there...she said....we will likely begin seeing a specialist at the University of Utah and deliver at that hospital.

With any one part of her brain that is missing/abnormal...a person can be completely normal. However....with her combination...they are unsure of the result.

The visit seemed to bring another wave of emotions. David and I felt, again, like we were just trying to stay afloat in a giant ocean of the unknown.

Would we have to say good-bye too soon? If so, how do you prepare to say good-bye to someone you love so much? What would she be facing? Would she defy the odds that are placed upon her? If her problems are severe...would we be strong enough to watch her struggle? So many thoughts...once more came flooding to the surface.

So...we've reached the here and now. We still sit in a whole heap of things we don't know. We are waiting for the call to tell us what they find.

Honestly.....this is hardest trial I have ever faced. I have moments where I am scared. Moments where I don't feel strong enough to keep pressing forward. There are moments where my tears seem endless.

However....there have been incredible moments. Moments where I have felt so close to my Heavenly Father. Moments of pure peace and hope. Moments of comfort. Moments of overwhelming love for my husband and our little girl.

Trials are hard. They seem to pull at the very fabric of your heart and soul. But I have come to realize that we are not in this alone. God didn't intend for us to face trials because He wanted to punish us. He knows what we can become. There are so many blessings that He wants to give us.......and sometimes....it is because of the greatest sorrows that we can find the greatest joy. 

One of the most amazing women I know recently gave us great insight. Often times in trials....we have fleeting moments of thinking "Why me....why now?" She said....instead..."Why not you? Why not now?" Heavenly Father believes we have the strength to get through this.

And I believe in Him. 

There is light in the darkness. Sometimes....that light is like the light of the moon...incredibly bright...but still unable to lighten all of the darkness.....We just need to have to have the faith to hold on until sunrise....when we can finally see everything.

We have been so humbled by the prayers and support that have been on our behalf. We feel so blessed to be able to see the hand of the Lord through so many people.

Most of all....I am blessed with the most incredible husband. He is my light and strength. 

I know that the love we have for each other.....and for our little girl is strong enough to see miracles.