Ready or Not

I don't even know where to begin. My heart feels like it is lost....and searching for it's missing piece.

The past three days have been some of the longest days of my life....It seems like it has been a year.

So much has changed since my last blog post, so much has happened in a mere week and a half. I feel like my world has been turned upside down and then given a huge shake.

As always....I work through things best by writing. I feel like I need to write. I have to. I have to share with the world how strong my baby was. I have to share with them her fight....and why she is ever our miracle....ever our hope...ever our light. So, buckle in my friends....for the past week of our lives.

The week prior to Adalyn getting sick...we threw her a half-birthday party!

Last Wednesday, David woke me up to tell me that he thought Adalyn was getting sick. Immediately my heart sank.....but I tried not to be too worried. We had battled colds before. Her heart rate had been between 180-200 all morning. She was sounding labored to breathe....and she had spiked a fever. We were scheduled for a well child check that day... So we just called our pediatrician and asked to come in a little early. Little did we know at the time, how bad Adalyn really was.

At our appointment, our doctor sent her for a chest X-ray just to be safe. The results were bad. Very bad. Quite frankly....the worst they could be. Adalyn's lungs were completely whited out. Meaning there was absolutely no room for air. In fact...her lungs were so filled, that they almost looked like bone on the X-ray. We rushed to the hospital to be admitted....still not fully comprehending how sick our sweet baby really was.

For the first two hours being at Dixie Regional Hospital, they struggled over and over to try and draw blood cultures from Adalyn....they needed to see what bacteria she had caught. Her adorable chubbiness meant it was really hard for them to find a vein for a blood draw or an IV. She was poked over and over. After two hours of no success...and just making Adalyn more upset....they had to act fast. Her CO2 levels had climbed to 108. Just to compare....a normal, healthy level is 45. Her CO2 levels were making her blood too acidic....and since her lungs were too full, she was unable to clear any CO2.  The body cannot function when it becomes too acidic. The just of this meaning Adalyn was an incredibly sick little girl. Life threateningly sick. They were leaning to pneumonia. However....just to look at her, you would never tell. She had calmed down and was sleeping.

They called the life flight team....and while they were waiting for the team to arrive they had to intubate her. Meaning placing a breathing tube in and having a ventilator breathe for her to open up her lungs and start getting rid of all the excess CO2. The first 3 times they intubated her ....it failed. She turned blue....then gray.....and her saturations dropped to 0. David and I stood at the edge of the bed....trying to grasp if this was real life....if we were really watching our baby die.... They were able to bag her back each time...and finally on the 4th try....were able to get the tube in and hook up a ventilator to start breathing for her. It was like watching a horror movie....but we couldn't look away.

We felt sick. Stepping out of Adalyn's room was surreal... we had been so caught up in being right next to Adalyn that we hadn't noticed the chaos around us. In her room was the neonatologist, the anesthesiologist, the NICU nurse practitioner, the lab nurses, the respiratory therapist, the life flight nurse and her pediatrician. Outside her room was a crash cart...and another cart with drawers open and supplies out....

I vaguely remember a nurse handing us sandwiches and giving us hugs.

The life flight team loaded us up in an ambulance, took us to the St. George airport. Those two nurses were incredible...and were such a tender mercy. We flew to Salt Lake, then took another ambulance to Primary Children's. Adalyn was so brave....in a matter of hours...she had been poked....prodded...poked some more....had an IV placed... sedated and intubated. She just continued to hold on to our fingers. I felt more helpless then ever. This wasn't supposed to be happening. We weren't supposed to go to Primary Children's like this. We were supposed to go the following week to start the Ketogenic diet. Not because she was sick.

As we left St. George....we realized our first miracle. Adalyn hadn't seized for the 3 hours that we were at Dixie Hospital. That hadn't happened in forever.

Right as we were taken into the PICU....the doctors pulled David and I aside and told us the chances were very low of Adalyn surviving this.....of ever being able to remove her breathing tube. When we heard this, I felt like I had been hit in the gut with a spiked bat. How could that even be possible? They asked us to start thinking about what we wanted for her....and to begin thinking about comfort care. My mind felt like exploding. All along we knew that Adalyn's life would be cut short. But it wasn't supposed to be this short. It wasn't supposed to happen now. We still needed years to love on her!

Yet there we were. By this time it was about 1 am...David went to sleep for a couple hours in a sleep room. I sat next to Adalyn....helplessly holding her little finger and cried. I sat and stared at the rhythmic rise and fall of the vent breathing for her....trying to comprehend an ounce of what had happened that day. This was my perfect, sweet, loving baby. As I sat there, yet another doctor came in to tell me the chances of Adalyn surviving was slim. Through that night.... Adalyn was given two sedatives....morphine...and a dose of ativan (a rescue seizure medicine), and was still having mild seizure twitches about once an hour.

I remember at one point just standing in the bathroom....sobbing....trying not to hyperventilate and keep breathing. There were times when I literally pinched myself thinking....this cannot be real. This has to be a nightmare. I would shout in my mind....please wake up...please wake up....wake up!

But it wasn't a dream. It wasn't even a nightmare. It was really happening. 

The next day came and with it....more terrible news. Adalyn did have pneumonia. And there was a small infection. But it wasn't because of a bacteria....or because of a sickness she had caught. They called it an aspiration pneumonia. Meaning that Adalyn had been aspirating her own secretions into her lungs. Because she had been seizing so much, she wasn't swallowing very well....so those secretions would go into her lungs. At her baseline, Adalyn doesn't breathe very deeply, or cough very deeply....so those secretions had the perfect environment to grow into something nasty. She became sick so quickly because her lungs had begun collapsing on themselves. Her body wasn't perfusing well...(meaning not enough oxygenated blood was going out to her body).

All of that combined had put Adalyn into respiratory failure. Because of the nature of Adalyn's syndrome.....this was the worst thing that could happen. 

They were suctioning her frequently. Which is awful to watch. Horrible. Terrible. A breathing tube is like have a straw in your lungs. Your body cannot swallow because the tube is there. To get the secretions out of her lungs they had to suction. Suctioning through that straw is awful. Each time Adalyn would start coughing so hard...but it was a silent cough...because the tube was down her throat.

My heart broke to watch silent tears stream down her face.....and be able to do nothing. To whisper in her ear we were trying to help her.

Each time she would begin coming out of sedation...she would start seizing harder. We had some beautiful moments though...when Adalyn would wake up....and squeeze on of our fingers...and look at us with her all knowing, loving gaze. I felt so often like she was saying "It's okay mom. I'm still here."

Again we were told that Adalyn wasn't going to start breathing on her own. She was relying too heavily on the ventilator. David and I were taking 2 hour sleeping shifts....Neither one of us able to stay away for very long. The body does incredible things on adrenaline and no sleep.

Saturday.....an amazing thing happened. They did a breathing trial....meaning they turned off the ventilator to see if Adalyn would breath on her own...and our little trooper did! She wore out quickly...but she did it for about an hour. We were both so proud of her.

However....by this point David and I knew. Her doctors had talked to us countless times. Even if Adalyn was able to have her breathing tube removed.....the chances of her surviving much longer were very small. We had been warned about this very thing since she was born. Her lungs were failing. No one knows why her lungs have progressively gotten worse throughout her life...but here we were. The severity of her brain structure and her failing lungs made for a terrible combo.

Her lungs could get her better...but not by much, this would happen again and again. More quickly. Her lungs couldn't stay open....sickness or not...they would continue to collapse.

We could trach her....but if we did we would also have to sedate pretty heavily much of the time...because nothing else helps the seizures...Essentially she would become totally reliant on life support.

We couldn't do either. We were at the worst crossroads in the world. It was like asking if we wanted to jump into a vat of lava.....or a pit full of knives. When she was first born, we were told that the best case scenario for Adalyn would be only a few years...and that is if we were able to control her seizures....and if her respiratory system didn't become a problem. Even when they had first told us this....we didn't want to believe it. Well....we had hit the perfect storm. Adalyn's quality of life before this episode had been declining fast. Her seizures had taken so much away from her....she was almost constantly seizing. Getting her back to her baseline would mean she was still suffering. Putting her on a trach and sedating her all the time sounded terrible..But having to say good-bye to her sounded the worst. 

How could we say good-bye to our baby?

On Sunday.....Adalyn had another breathing trial....and did amazing. Amazing for her that is. She was breathing without the vent for the whole day! We had decided that day....after many prayers....tears....more prayers...and several break downs, that we would remove her breathing tube that evening and see what happened. If things went wrong, we would not intervene. We would opt for comfort care. If things went well.....we would go home on hospice and enjoy the weeks we had left with her. I could never fathom us reaching this point. We had fought so hard for her...we never wanted to accept that she would leave us. In fact....I wanted to kick...scream and throw a fit that it wasn't fair. Yet, here we were. Even our best case scenario....if all the doctors were wrong...things would still be incredibly rough and still declining for her. There was no magic medicine to fix her brain structure.

The doctors told us that they didn't feel removing the tube would go well. They didn't think Adalyn would be strong enough. That evening, our family all came....we sang her songs, and all prayed together....it was beautiful....and it was time to remove her tube. David and I stood by her side...they pulled her tube and immediately placed on the nasal cannula....but it wasn't helping. Adalyn's saturations were dropping fast. And her heart rate started to plummet. I started sobbing. This couldn't be it. It had felt like the right thing to do. We felt we would have a little more time!

She turned blue, again. And gray, again. And then....miraculously.....started gasping again. Her numbers began coming back up. She was a fighter! She had her own plans...and going at that moment was not in them.

That night, because the tube was removed.....we were able to hold her. It was the most incredible feeling ever. After not getting to hold her for days.....we just wanted to soak up everything about her in our arms. It was perfect. Holding her close and just squeezing her tight without having to worry about all of the tubes. The whole night we kept waiting for her seizures to come back in full force...but they didn't.. Another miracle. In fact....Adalyn hardly had any seizures from the time we left the hospital through her passing away. She had a few mild ones every couple hours...but they were so small. It was an incredible tender mercy.

The next day....we didn't know what to expect....We wanted to take her home....but we were afraid of the 6 hour drive home. We had a meeting with all of her doctors....her amazing neurologist....and our favorite people from Rainbow Kids, Surreal doesn't even begin to describe the feeling I had. Walking into that room with a room full of doctors....and sitting on the couch felt like something out of a movie....when they have horrible news to tell you. Everyone has sad looks on their faces. Everyone already knew we had chosen to opt for comfort care.

Elisa...oh how we love her! Adalyn definitely liked her even more without her stethoscope. 

I had always thought that when things came to this point with Adalyn....that when we had to start discussing end of life care.....that I would be angry. That I would be mad at everyone.....Mad at God...

But as we sat there.....something completely different happened. They told us they had arranged to fly us back home. (Folks....this doesn't usually happen). They knew our drive would be long. And wanted to help. They each went around discussing what they felt would happen the next few weeks...and the severity of Adalyn's case. They expressed so frequently their admiration for David and I. They told us repeatedly that Adalyn truly is a miracle for surviving this long.

In that moment....all I could feel was an overwhelming sense of gratitude. I sobbed. I felt so grateful for these people. For their sacrifices for my baby. For her neurologist....and helping us to always try for more time...to try to find something to help her. I felt so grateful for Adalyn....to be her mom. To have witnessed a miracle grow before my eyes. I cannot describe the peace I felt. I knew God was in charge. That He was helping to prepare my heart.

That evening a wonderful  music therapist came to her room to ask us a lot of questions about Adalyn and how we felt about her. She then went and took everything we said and put it into a lullaby for her. A song that I have since listened to hundreds of times. I wish I could play it on every radio station in the world.. You can listen to it by clicking here

Tuesday morning.....our life flight nurses came to check in. They were the same nurses that flew us the first time....and we had fallen in love with them! When they came, they had brought an outfit for Adalyn, so she could "Go home in style." It was beautiful. My heart was so touched that they would go so above and beyond because they had felt such love for our sweet baby.

Best life flight nurses ever. They treated Adalyn like a princess!

Her doctors and neurologist came to bid us good-bye..... My heart was touched even more to see the tears in their eyes as we prepared to go.

I cannot tell you the words to describe my emotions of leaving the hospital.... Of loading my little girl on the plane.....knowing we would be taking her home to watch her pass away. Surreal doesn't even begin to cover it.

It wasn't supposed to happen like this. You are only supposed to leave the hospital when your baby is healthy and going to be okay. Adalyn was so sweet....once she was changed into some comfy clothes....unhooked from monitors....and all bundled up...she zonked right out. She seemed more than happy to go home. Adalyn has always felt wise beyond years....and in those moments....she seemed to know far more about what was going on than I did.

This picture captures my heart. Flying through the storm....and the sun finally broke through to shine on her sweet face. 

I was trying to hold myself together minute by minute. I was trying to keep breathing.

As the plane took off....we drove through some pretty dark storm clouds for most of the flight.....then suddenly....we were on top of the clouds. The sky was so blue.... The clouds below looked like an endless sea of beautiful white blankets. And yet again....I sobbed. All of my emotions were barely held together by a thin dam. A dam that frequently broke.

Up to this point....those were the hardest days I had ever lived.

Once we arrived back home....our life flight nurses helped to get us settled. In a matter of hours of being home....Adalyn was clearly starting to become uncomfortable. We began giving her morphine that night.

Tuesday night, David and I both alternated a 4 hour stretch of sleep. That might not seem long....but it felt incredible. We had been running on 1 1-2 hours a night all week. Adalyn was so incredibly peaceful that night...it was beautiful. I wanted to freeze that moment and simply stare at her forever. Watching the rise and fall of her chest and breathing in her smell.

Wednesday was when things took a hard turn for the worst.

When we brought Adalyn home....we thought we would have a few weeks. We thought it would take her body a while before things got bad again. As it would turn out....her lungs were worse than we thought.

Wednesday night, we thought she wouldn't make it. Her oxygen saturations were in the 40's. She was struggling to breathe....It was heart breaking.  Yet in the early hours of the morning, she had a few hours where she did okay again. David and I had pulled mats out into the living room and put her between the two of us to soak in every possible second with her. Her last few days were hard....yet incredibly beautiful. The moments she was awake...she was so clear. She was present....I have no doubt she knew exactly what was happening....and she was trying to help David and I be strong.

During the day on Thursday.....Adalyn would even slightly cough and she would turn blue and her oxygen would drop. Her secretions were thick..but they weren't the problem... Her lungs just couldn't oxygenate.

By Thursday night, Adalyn was not in good shape. Our sweet family friend Ora came to take pictures of Adalyn...she was such an incredible help for us in so many ways. We were told that as the lungs fail....the heart rate increases to try and compensate. Typically, this doesn't last very long before the heart fails too from trying to work so hard.

For Adalyn.....this lasted hours and hours.

And this is where my heart shatters. No one should ever.....ever have to watch their child die. It is the most soul wrenching......heart breaking....agonizing thing I have ever experienced....and that is an understatement.

I think I will forever be haunted by it. Adalyn's heart was so strong....so full of love....that it wasn't ready to give out....but her lungs couldn't do it. There were so many times that night when she stopped breathing. Where we said our broken good-byes.....and then she started breathing again.

At 7 am on Friday....we knew it was the real thing. Adalyn's lungs were shot. And her heart was wearing out. At 9:19 am....we were both still holding Adalyn. I whispered once more to her that she was the bravest girl in the world....and we loved her so deeply....and that I wasn't ready to let her go...but that I knew she was brave enough to let go. At 9:20 am....Adalyn opened her eyes....and lovingly looked at us one more time....then she took her last breath.

She was so valiant and pure right to her last moment. She was strong and brave...The room was filled with so much love. I had no doubts angels were present and encircled her entirely.

To say we are heart broken doesn't begin to cover it.

I miss her so immensely it hurts. I miss her in my arms. I miss her smell. I miss her sighs. I miss changing her diaper. I ache to rub her little head and kiss her cheeks. I long to feel her warm breath on my face. I feel like I can't breathe. I feel like at any moment I am going to be swallowed up by a sea of emotions.  Getting a full night of sleep means that there is no Adalyn to take care of all night. I go from feeling at peace....to sobbing. I can't go anywhere without holding on to something of hers.  I sleep with a pair of her jammies....or her blanket. I look at her pictures and long to re-live those tender moments. 

Taking care of Adalyn was the most important job in the world. Without her here....our hearts feel lost. She endured so many things in her short life....yet she was always our ray of light. I have no doubt she will continue to be.

I can't even bring myself to do the rest of our laundry....because I don't know if I can handle the day where there are no longer any of her clothes to wash.

And so here we are. Today...we picked out her casket. We bought burial plots...three of them.  We have planned out her funeral. We dressed her in a beautiful white dress....and I got to hold her once more. Feeling her body once more in my arms....my heart felt like it was on it's last stand. I am at a complete loss of words to describe that moment. My heart hasn't yet accepted that this is real. That my baby is gone. She looked so beautiful. This perfect angel.

 How can we do this? How can anyone do this?

Babies aren't supposed to die. They are supposed to be loved...and snuggled....and loved some more.

I feel scared that this is only the tip of the iceberg of our grief.

However....through our grief...we have been given some of the most beautiful miracles...we have been given such tender comfort.

So many people have reached out to us.....and have shared with us the many ways our sweet Addie has touched their hearts.

I have wondered countless times lately how such hard things can happen to people. Why there is such suffering.... and last night I had a thought. 

At times, God allows storms to happen......so we can see His had reaching to calm the storm....and send the rainbow. Adalyn was a beautiful gift sent to our lives.....to remind us all that God is mindful of us. To remind us that His miracles are real. To teach us about unconditional love.....and hope. 

John 9:1-3
1 And as Jesus passed by, he saw a man which was blind from his birth.

2 And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind?

3 Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him.

The works of God were truly manifest in Adalyn's life. She has brought so many people closer to God....she has helped us all to remember what is truly important in our lives. We know there will be hard days ahead.....We know the depths of grief are real...We know that right now....it doesn't always feel like things will be okay.

But we know they will be. God will be with us along this road. His comfort doesn't end....and He will be there to carry us through the moments when we don't feel we can stand any longer.

We will get through this together. My love for David has grown in more ways than I could ever imagine. He is my anchor. And....we have the most beautiful angel to be with us in every moment. Because of her we will never stop trying to be a little better each day. We will spend a lifetime learning from the lessons she taught us. 

We will be a family forever. God didn't intend for us to have endings....but rather to have eternity. We cannot wait for the day when we can hold her in our arms again.

Until then sweet girl, we will miss you in every single moment. I am forever honored and so grateful you chose us to be your parents. There is no other title in the world I would rather have.We weren't ready to let you go....Our time wasn't long enough....but you had bigger plans. The world is a much brighter place because of you! Always stay close by.

We don't even know where to begin thanking everyone for the outpouring of support we have received. Heaven truly sends countless angels in a time of need...and so many of you have been our angels. Thank you for lifting us up.....for sharing your thoughts about Adalyn with us. For letting her story touch your hearts. Thank you for believing in us....and supporting us in so many ways. I hope someday we can somehow express what it has meant to us. Thank you for helping us to share our sweet girl with the world.

This is the last photo I took of Adalyn.....and it captures perfectly the love she fills us with.

Searching for Stars

I never knew it was possible to feel such a tidal wave of emotions all the time.

Tomorrow Adalyn will be 6 months old. 6 months longer than anyone originally thought she would live.

I have spent a lot of time thinking about the past 6 months for her. When I think of all that she has gone through....I feel my head spin. She has had to suffer through so much....and that is what I struggle with the most. I think of the countless tests and procedures she has gone through where we have had to hold her down as she cries. I think of her silent scream while she was intubated...when all we could do is rub her little head. I think of the nasty medicines she has had to be on. And of course... her seizures and spasms...every. single. day.

Her seizures and spasms have just continued to progress. There is nothing that I have ever hated more. Between her seizures and spasms....she now has hundreds a day. On a good day....she seizes every 30-60 minutes.  On a bad day...it's every 15-30 minutes. Her longest stretch of sleeping is about an hour and a half...  Her seizures now cluster. Meaning she never just has one at a time. She typically has a dozen at a time. She now has many different types of seizures. Most recently, she has started having full body "twitches" where her whole body rapidly twitches for a number of seconds. At 6 months, she is unable to move unless she is seizing. She has incredibly low muscle tone. Because of the volume of her seizures, she is exhausted all the time.

When she is awake...she is typically seizing or recovering from a seizure.

There are no words to describe how sick I feel watching her seize so frequently. How hard it is to hold her while her body jerks over and over. Day after day. To watch as silent tears ooze out of her little eyes...to see her eyes red and exhausted. It makes me want to throw up. Usually, between the hours of 2 am and 5 am are the hardest for me. At this point, it is just her and I awake. The emotions of the day weigh heavy....and it is hard to continue to take. I hold her and cry. Because there is nothing else I can do.

We know that her little body cannot endure this forever. We know that stopping her seizures from progressing is a very slim chance. We also know that if by a miracle...we are able to get her seizures under control.... because of the severity of her brain....there are other life-threatening anomalies we will have to confront.

Each day, we are faced with knowing that her life won't be very long. I hate the fact that we even have to think about that. Yet it is like a snake....that likes to slither around our feet. And I just want to stomp on that snake. To kick and scream and yell that it isn't fair.

Look at that hair! Her dad's for sure.

A year ago at this time.....I couldn't wait for this time of year. I was ecstatic to have a 6-7 month old baby by the time the holidays came around. I couldn't wait to show our sweet baby all of the best things about the holidays. To stare in her eyes are she marveled at the lights....the sounds...the smells.

One of the biggest changes for me has been the change in my prayers. For so long....I have prayed for her seizures to stop. I have prayed with all the strength I could scrape. And yet they have continued. It has been hard for me to accept. Yet now....my prayers are different.  I pray that she won't suffer. I pray that she can feel angels around her constantly...that she can know how much and how deeply she is loved. I hold to the hope that something will be able to help her.... But I pray ultimately that we can have the strength to continue to be the parents she needs. That isn't to say I am giving up on her by any means. I will always be rooting for her in every way...

Notice the blades of grass that her Grandpa Brown added for a little Hawaiian pizzazz

Adalyn has truly taught me so much in 6 months. She is the brightest light I have ever seen. She is our miracle. We will continue to be in her corner...and to love her.

She has touched our lives immensely. And with all that she goes through, she is so strong. Her body may fail her at times....but her spirit is so strong.

I cling to the beautiful moments we have with her every day. She keeps my faith going.

Some days .... like today clearly...I feel like I'm just barely holding things together. But when I think of what I wanted most out of life....to have a loving husband, to be a mother, and to have a loving family...I realize I have each of those things.

God doesn't leave us alone to face our darkest days. He sends us what we need to keep going. We may not know the "why" of all things....or if you are like us....you might not even know the "how" either.

I have realized the darkest roads often have the most beautiful, bright stars above them. 

She wasn't to happy to be in the chair right then

Some times, I get too stuck on the darkness....that I don't see the beautiful lights above me to get me through. I think the greatest display of hope we can have is to keep walking that dark road. Trusting in the light from those stars....and knowing the good we experience on the way is only a pebble compared to the good that lies ahead.

He knows the depth of the ache in my heart. He knows that I can be stubborn, angry, tired, and uncertain...but He never leaves. He keeps the pieces of my heart together when I feel they are falling apart.

He has trusted us with the beautiful, and loving little girl. Inspite of all the hard days....and all the things we have had to watch her endure....the love we have experienced because of her is greater than anything I have ever known.

The goodness in her little heart amazes me.

Here's to you sweet girl.....You continue to teach us every day. You are our whole world. We love your snuggles. Your extreme cuteness in every outfit you wear. Your chubbiness..and the irresitable urge we have to kiss those very rolls! We even love your ability to have the stinkiest toots. Watching you grow has been our greatest highlight. We love you so much!

We go up to Primary's next week to start the Ketogenic diet. I am nervous for every aspect of that trip. We will definitely be in need of your thoughts and prayers. She will have to be inpatient for 3-4 days...and if all goes well, we should be home by the weekend.

Now for your viewing enjoyment..... Here is our "Little Owl" from Halloween! 

Sigh. So cute!

Clearly we are great selfie takers!

Infinite.

Today....I am feeling so grateful.

So often I wish we could see the end of our story. To see the words "Happily Ever After" and know that everything turned out just right. I know that's not possible to see the end. Right now....we are merely in the middle of a chapter of our story. And as hard as this chapter may be....it is filled with so much love on each page.

I have such a deep love for our sweet girl that my heart overflows. Most days...I am not very strong. But the sweet love from her and my incredible husband gives me the strength I need to keep moving. One of the many things that amazes me about Adalyn is her capacity to love. She doesn't care one ounce about looks....or about faults....She just wants to be snuggled close...and loved. In return....she simply loves...and makes you feel so incredibly lucky to be loved in that moment.

Heart. Melted. 

I know I may sound like a broken record.....but I am amazed each day at the effect of love. Love is infinite. The effect of one act of love doesn't just stop. It ripples through countless lives. We all have a need for that pure...unhinged...all bearing love. One glimpse at any part of the world today shows that all of us need that very love in our lives to get us through. It reminds us that we are not alone. That we are enough. That we are needed. And that we have a divine purpose. My heart is so full in knowing the love from our sweet girl has rippled into countless lives. At the same time...the love we have received has rippled into our lives in giant waves.

Her new chair. It makes her look like such a big girl!

And above all the hard this week....love is what I want to fill my day today. Not the sleepless nights....or the tears....or worries....or the constant seizures.

2 Corinthians 2:14
Now thanks be unto God, which always causeth us to triumph in Christ, and maketh manifest the savour of His knowledge by us in every place.

I love this so much. It gives me comfort. I can triumph. Because Christ's hand truly is in my life in every place. Even the times I am feeling unsteady...He keeps the pieces of me together...and helps me see the miracles I do have. The love in my life is such pure evidence of that.

This picture is a huge deal. Tummy time is rare! And sometimes rather hard to do. So proud!

And for this moment...I wouldn't trade it. My doubts are pushed away. I know that someday this chapter will end..... And the words "Happily Ever After" will come.

And all will be more than okay.....because love is greater.

This past week has had it's fair share of ups and downs. Most days have their incredibly hard moments and moments of simple peace. Complete opposites? I know. So...depending on the time of day....it could be an amazing day...or the stinky pits. The increased dose of medicine has seemed to help the past week. She can sometimes go a few hours without seizing. Yet each day....things are slightly worse than the day before...and we can see that the effect of this medicine might not be permanent. If she has a bad morning....she will have a good afternoon and evening...and a bad night. If it is a good morning....she will have a bad afternoon and an okay night. Meaning she is able to fall asleep after her seizure cycles.

We have officially received our admit date for next month to start the Ketogenic diet. We will be admitted to Primary Children's the second week in November...and likely be there for at least three days. Normally.....the main energy source for the brain is glucose. Ketones are the result of the body breaking down fat for energy instead of glucose. When the body goes into ketosis....it is typically a bad thing. You may have heard of diabetic ketosis. It can often cause brain damage and other organ system problems. However...the idea with the Ketogenic diet is to purposefully put the body into a state of ketosis by feeding the body only fat. This sort of forces the brain to switch it's energy source. In many kids with frequent seizures...this sort of "reboots" the brain and for some reason, helps to stop seizures. With Adalyn... they are not sure what will happen with putting her body into ketosis since her brain itself is so abnormal. It may make things worse. The hope is that it will help her.

Thanks to my dear friend's brilliant idea...I made these! She is real, funny wise beyond years. You can read more about her family here 

Putting the body into ketosis is a very fine line. Which is why we have to be admitted to the hospital. They have to find just the right ratio. Too much....and it will cause damage. Too little and there won't be a desired effect. Once she is in ketosis.....we will have to check her pH levels multiple times a day to make sure she stays in that sweet spot. To say we are nervous for it would be a slight understatement! But right now, I'm not thinking about that.

Thank each of you so much for your prayers. For believing in us. For helping us hold to hope. We have received such beautiful things this week! From the most beautiful flowers....to such tender pictures drawn by a little girl with such a big heart. We also had an amazing visit from some of our very best friends in Vegas. They drove two hours just to spend the afternoon with us. We truly have the best friends and family. Without all of you, we wouldn't be able to continue!

We love, love  this sweet family! They have done so much for us! Not only that...but they brought Adalyn so many clothes! Their little girl loved rubbing Adalyn's head. So adorable.

It made our day to get these in the mail! Thank you so much Steve and Katie for the love of your sweet family, especially your little Lucy!

Just because flowers from the Ashmore's....We loved having these to look at all week! They are such happy flowers!

And now....I'm going to go continue snuggling with my baby girl....and maybe even smooch my husband. After all....they're what it's all about. 

I love them infinitely. 

Circumstances.

Last week, I went to Walmart to get diapers.

As I stood in the aisle... surrounded by countless baby items...a million different emotions flooded my mind. David and I handle our emotions much better then we did back in May. Day to day...we see so much good. In that moment though....my mind raced over the past year.

When we first found out we were pregnant.... I had to resit the urge to buy every cute baby thing I saw. We had decided to wait to begin getting things for our bay until we found out the gender...besides....we would be living in Missouri for 3 months, and we didn't need lots extra things to move.

I couldn't wait. I was so excited. I had so many ideas of how I wanted to decorate a nursery. Things I wanted to make....Books I wanted to read....etc. However....just a week after we found out we were having a girl....we began finding all of the problems we would be facing....and so began our journey. We were told numerous times that the chances were slim of our baby surviving long after birth. In the end....we only ended up buying a car seat, a diaper bag, a few outfits, and some other basics. In fact, when we brought Adalyn home....she slept in a cute bouncer that my amazing boss had given us for a few nights until we bought a bassinet.

So cute!

As I stood in that aisle....surrounded by so many odds and ends of baby items...my heart once again felt such an ache. Foods.....crib mattress covers....high chairs.....baby monitors...seats..activity gyms....bottles.. Who knew such silly items would make me have such a longing? In staring at all of these items...I thought of something that a stranger had said to me recently. In brief passing, we were talking about babies....(as she was carrying her baby). I had mentioned something about having a baby too..... She said a line that has rung in my head since....."Oh then you know how it is...just wait til they get older."

In my mind....all I could think is...No...I don't. I don't know how it is. I don't know about milky spit up. Rolling over. Having your baby grab at your hair...earrings...or glasses. I don't know how it is experimenting with different foods....or bottles. I don't know how it is simply put your baby in a bouncer and watch them play. I don't know what it is like to hear your baby giggle. Or begin to recognize faces... More than likely...we won't know what it is like to watch Adalyn get into everything... Dump flour over the floor...scatter toys everwhere... Or leave finger print smudges all over.

Snuggles from Uncle Hyram!

I do know about preparing to send your baby in to surgery. I do know about having to fill out an advanced directive for her in case things ever go wrong. I do know how to change a G-Tube like a pro. I do know how frustrating it is in dealing with medical supply companies. I do know a hatred for seizures and a fear of colds.. I do know how nerve wracking it is preparing medicine....knowing if you do it wrong, or mix doses.....you might just put your baby into a coma.... A lot of the normal things though? No....

But I want to. I long to. And the reality that we will never experience many of those things with her stings.

I recently read a quote from a book called "Strength Through Adversity" that a lovely woman in our ward gave to us....It was a quote from a Olympic coach, Kay Yow, who had developed cancer... She said,

"God didn't choose to change my circumstance. He chose to change me."

We have found a love for our carrier! Best thing ever. 

We have spent countless hours praying that circumstances would change for us....For Adalyn. And a lot of the time.....our circumstances haven't changed. A lot of the time, they have continued to worsen for her.

Even though our prayers haven't been answered in the way we have always hoped....we have seen so frequently the hand of a loving Father in our lives. We know He hears our prayers...each and every one. We know that He does have a purpose. No matter how much we are struggling...He knows and understands. His heart aches with ours. But if we can look around us, we see so many tender mercies reminding us that He is there.

God has given us something beautiful. He has given us this perfect angel to simply love. Her spirit is so strong. Her innocence is so pure. Love just oozes out of her little body. In loving her....He knew we would be changed...and so would the people around her. 

Lucky us..we got a great visit from the Anderson's!  Adalyn loves her new clothes!  

The thing is.... sometimes it hurts that our circumstances haven't changed...and I am tired.. I am certain that many of you facing your own struggles can relate. I am tired of watching my baby seize over and over....and over. I am tired for Adalyn...that between seizing and being excessively mucusy...she doesn't get much of a break. Excess mucus...means more suctioning. I am tired from having an endless plague of worries run through my mind on a hourly basis.

Sometimes...just like that day in standing in the aisle at Walmart....I feel that familiar wave of emotions crashing down. I think it is okay for me to grieve. It is a longing for all that I wanted for our baby girl. Hopes....dreams...things that may never happen in this life for her. Things that are hard to let go of.

In these moments....it doesn't feel like it will be okay. I feel frustrated. I hate....hate...hate seizures. I would never wish them upon anyone.

I feel panicked. I don't want to do this...to watch her struggle day to day. I want to run away and pretend it isn't real.

No parent should ever have to watch their child struggle so much.

Yet....we do. Each and every day.

I often wish there were a simple solution. A switch. A magic potion maybe. Or even a fast forward button so I can see how the ending turns out. However, those are all merely wishes. When I finally stopped wishing for all the ways things would be different....and hoping for the day that I would wake up and our circumstances would be perfect....I realized that this time in our lives does have an incredible purpose. The change has been in us. And we continue to try and make that change for the better. I can see how much I have changed and grown in this past year. Because of one sweet, beautiful girl I am learning things about myself that I never knew I had. 

One of my absolute favorite pictures! Alert moments are rare!

That I am strong....and I can do hard things. That I am not alone.That if my baby can face each day...so can I.  Most of all...that I am loved....and I can love.

Our circumstances don't always change as quickly as we want. God doesn't always intend for it to. And sometimes, we simply won't know why. He asks us to trust Him. To allow Him to use our circumstances for greater purposes. The most inspiring people I know have all gone through overwhelmingly dark days....and yet.....they held on.

So much cuteness in one picture. My two favorite people!

Late last night, my sister called me....I found myself laughing so hard as we sent each other links back and forth of absurd clothing styles. As I got off the phone, I realized how blessed I am. There was a time while in the NICU that I wondered if we would ever truly laugh again. After that conversation I realized I have been laughing again. And so is David....his full fledged giggle/laugh....which I love.

Our circumstances and who we are is not set in concrete. Circumstances come and go. We change. We become.
What we become is our choice. 

Romans 8:37-39 
37....In all these things we are more than conquerors through him that loved us. 
38 For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come,
39 Nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord.

We were meant to be conquerors my friends. Not merely sufferers of circumstance.

I am learning this every day. And trust me..some days...I am not so good at this. My greatest days are the ones where I choose to see the good...in turn....the good changes me. Adalyn has taught me that love....especially God's love....is enough. That love is more than enough for me to face each day.

We have been on the receiving end of so much good. I cannot express enough how humbling it is to receive letters of encouragement....to receive such thoughtful gifts....to have so many people praying for us. Your acts of love have not gone unnoticed. They strengthen us in more ways than we can say. Some days...they are the tender mercies that keep us going.

This past week, we started a new medicine. For the first four days, it seemed to be helping better than anything else so far! Her seizure frequency was cut in half.....and her spasms were much less mild and she wouldn't jerk for very long. Unfortunately, they have come back again. Along with some new twitches. The hard part is that it seems the only thing that can stop her from seizing is sedation...and even then some still break through. Seriously....if you could all only see what she goes through on a daily basis...you would be amazed at what a trooper she is! And more fully understand why she inspires us to try a little harder. This medicine has also made her rather mucusy...which has meant a lot of suctioning. We will probably keep trying with this medicine for a few more weeks....adjusting the dosage. The tricky thing is higher dosage equals rougher side effects. Though, the plans are already in the works to start the Ketogenic Diet next month....more will come on that later.

Now prepare for an overload of adorable pictures! Tis the Halloween season after all!

Note....she wasn't a fan of the texture of pumpkins. 

Did you catch those chunky legs? Ahh..

Oh how I adore those pillow top feet.

On a different note....we just want to first off say that we do absolutely love visitors! However....with cold season coming up...we do have to be so careful. A cold for Adalyn is not something to take lightly. Her health is fragile. So...in coming to visit us...please be sure to get your flu shots! And make sure you haven't had a cold in at least 2 weeks....even if it is only the sniffles. And don't take it personal in any way....but we carry hand sanitizer every where...and have a lot at our house too. If we ask you to sanitize, it isn't because we think you are dirty. I think sanitize and wash my hands so much that my hands are in this permanent state of being raw and dry! I need to work on that. Anyway...We mainly just want to be extra careful those germs don't pull a sneak attack on us!