November 13, 2016

365.

That's how many days we've been without you my darling. You were called back to heaven early on a Friday morning. I honestly never thought we would survive a whole year without you. I felt our hearts would stop...or somehow the world would end...that there would be no way time could continue without you. 

Absolutely every part of my soul yearns for you. I ache to feel the touch of your sweet, soft fingers. I ache to smell you..to feel you in my arms...to simply run my fingers through your hair. I ache to shower you with love.

You've continued to teach me so much in these days without you here physically.

Even as angels were calling you home, you're heart was the strongest I have ever seen. Holding you as you slipped back into heaven was so sacred....yet completely devastated and shattered my heart. I wasn't ready to let go. Even now...I'm still not.


Thank you for making me a mommy. Thank you for being a light in countless lives. Your purpose was and is far greater then we could ever fathom.  Thank you for making me better. Thank you for showing with your entire life that miracles are real. You are pure goodness, Adalyn Grace....A soul that bright and loving is a testament to me that God is real. That He is merciful, present and loving.

Thank you for giving your beautiful heart to Daddy and I. Your love is the most beautiful thing I have ever held. 

This was the last picture I ever took of you....in the early hours of the morning before you slipped back into heaven. Oh baby girl....you gave us so much love. 

I'm at a loss of words today my darling, so...here are two songs. The first is is the words to "Homeward Bound," a song we we sang so frequently to you. Little did we realize how fitting the words would become for your life. The second is your song, Addie baby....and encompasses so much of our feelings for you.

In the quiet misty morning
When the moon has gone to bed, 
When the sparrows stop their singing
And the sky is clear and red, 
When the summer's ceased its gleaming 
When the corn is past its prime, 
When adventure's lost its meaning -
 I'll be homeward bound in time 

Bind me not to the pasture 
Chain me not to the plow 
Set me free to find my calling
 And I'll return to you somehow

If you find it's me you're missing
If you're hoping I'll return, 
To your thoughts I'll soon be listening,
And in the road I'll stop and turn
Then the wind will set me racing
 As my journey nears its end
 And the path I'll be retracing 
When I'm homeward bound again

Bind me not to the pasture 
Chain me not to the plow 
Set me free to find my calling 
And I'll return to you somehow 




I look forward to the day we get to come home to you too. The day you return to our arms once again. I hope you know how deeply you are loved by Daddy and I . You are written on every single part of our hearts.

We miss you so much baby girl!

Stay ever close, 

XO

Mommy

November 10, 2016

Coming Home.

During our stay in the PICU...we realized soon that Adalyn wasn't going to get better. I still wasn't ready to accept that though. Countless times I prayed....Telling God exactly what I wanted. Exactly what we need. Begging....bargaining.... and pleading for things to be different. For results to come back better...

Yet over and over....David and I got the same answer.  It was time for us to let our brave, perfect little girl go home. 

Making the decision to remove Adalyn's breathing tube was the absolute hardest of my life. To know that we would only have a short time left would instantly throw me into a panic. Even today, I struggle to think of that.

After removing the tube, Adalyn never again had a seizure. It was our miracle. Her entire countenance radiated wisdom...comfort...and peace. She was tired, yet her eyes were so calm. She even "talked" in those days after removing her tube.

First time holding her after the tube was removed...best feeling! 

We had a big meeting, with absolutely everyone involved in her care. Best case scenario, with each treatment option we could try....it would maybe buy us another month. As much as we wanted to keep her with us, we couldn't put her through what we knew was only a chance at more time.

Some of the physical angels we were surrounded by helped arrange for us to be flown home.

November 10th, we finally came back home. 

There are no words to describe how I felt leaving some of our family...both mine and David's sister...knowing that would be the last time they got to shower her in kisses.


Her life-flight nurses dressed her perfectly. She looked so cozy and beautiful. My eyes could hardly leave her perfect face the entire flight home. Almost as if my heart was trying to etch each and every detail of her into my memory. 









As soon as we were settled in that night... it was clear how much Adalyn had wanted to be home too.

That night was the last perfectly calm night we would have. I won't go into detail, because it's too close to my heart.... But that night was one of the most sacred of my life. The capacity of love that filled that room was beyond anything I had ever felt. I know angels were present....and the prayers from so many were comforting us...

The days that followed...we spent every single second next to our sweet girl.





As I have reflected on that day... so many thoughts have come to mind. I wanted to hope that this November would, in some ways this year, be much more calm...and give my heart a chance to find the pieces of itself again.

Oh how I miss this..

Yet, this past weekend has once more set David and I into a tailspin. 

On Saturday, David's defibrillator (much like a pacemaker) started beeping every few hours. Most people might not know the feeling of their body randomly making beeping noises...or sounding like an English ambulance...but David sure does. We wanted to hope it was just his device malfunctioning and sending off a false alarm.

As it would turn out...one of the leads going from the device into his heart has shattered. Meaning, David needs immediate surgery to replace it. 

When we heard the news....I wanted to say, "You're kidding me, right?" How is it possible to so frequently have such horrible timing... When we found out we were pregnant earlier this year...one of my fears was something going wrong with David around the same time we were having a baby again. I told myself I was being irrational....and shell shocked from the past year. Yet here we are.

The complicated part is that David already has too many excess wires in his heart from old leads. They generally don't remove old leads because of the risk it poses. However....they can't fit a new lead in...unless they remove an old lead.

The risk with removing a lead is that it can puncture a hole in the heart wall. Having a hole in your heart is not a good thing... 

The lead they need to replace is one David rarely needs....but essentially...it is his life saving lead. If anything goes wrong, like heart going way too fast, it's the lead that delivers a shock to his heart to get him back into a normal rhythm. Imagine the paddles you see in medical shows....that's what his device does.

In the mean time...David gets to wear this fashionable "Life Vest" It monitors his heart....and can deliver a shock if needed. 

You can tell he really loves it. 

So, this week, on the 17th...David goes in for surgery.. Not because his heart itself is having problems..His heart is doing great. It is just the device/leads inside. His doctor set us up with one of the best lead extraction surgeons in the nation. If all goes well, the surgery will be several hours...and we'll get to come home after a couple days. Worst case scenario... if a hole is punctured, they do emergency open heart to fix the hole.

And....our little boy is set to arrive on the 27th. 

Needless to say....there have been many tears shed in the Brown house these past few days. It's hard to not understand. Hard to feel like the rain clouds are so constant.

I have no doubt Adalyn gets so much of her amazing courage and strength from her brave Daddy. They are the two most incredible souls I have ever known.  I feel beyond lucky I get to call them mine....but feeling so helpless to fixing things is debilitating at times.

I wish I could say I have some sort of insight... All I know for sure....is that some days are hard. Really hard. 

Some months are hard. Really hard. 

So....this week...I find myself begging, bargaining... and pleading once more. Mostly just trying to remind myself to trust in Someone greater. We are praying that all goes so smoothly with David's surgery. Praying that we feel Adalyn so very close. And praying that our growing little boy stays inside for as long as possible.

November 4, 2016

"She's Sick.."

November 4, 2015

I had gone to bed at 5am that morning. Adalyn couldn't sleep more then 45 minute stretches by this point. So one of us was always with her.

That night she had been so calm, even through her seizures. Her breathing, for her, seemed normal. Her saturations were good. Some moments now, I try to filter through that entire night, thinking maybe somehow I missed something... That somehow... I should have been able to change the course of events...

Around 9am, David's hand touched my shoulder. He whispered, "Amanda, I think she's sick. She has a fever. Her breathing is labored."

Those words still ring in my head at times. 

My eyes popped right open. Mentally putting on my fighting gear. At that moment, it didn't even cross my mind that later that day we would be life-flighted to Primary Children's. In my mind, I thought we would get through this like every other sickness she had.

We gave her tylenol....and she calmed down.

By 12pm...we were in her pediatrician's office. When you have a special needs child, there is never a delay when you say you need to come in. Her pediatrician was amazing, and right away sent us for a Chest X-Ray.

What I remember most about that day is how brave our sweet girl was. She wasn't fussy. She didn't cry. In fact, she was so incredibly calm.

Within 15 minutes, we had the results. You would think by then, I would have known it wasn't good news. Her doctor told us we needed to get over to the hospital immediately. Her lungs were completely whited out..... Meaning....there was almost no room for oxygen to move in and out. Breathing is sort of a non-negotiable.

Even at this point, both David and I were oblivious to how seriously sick she was. This is odd...because we both have a medical background. We know how serious it is to have those type of results.... I guess in those moments...we were just prepared to fight whatever it was we were facing. Whatever we were up against, we were going to win the battle. 

In my mind, this would just be another quick hospital stay...we would get her all better....and be back home before the end of the week.

By 3pm...we were at the hospital. We didn't even have to check in...they had been notified we were coming. And right away took us to a room. We laid her on the hospital bed....and before we knew it...our world started spinning. 

*Here is a few things you need to know. St. George, as wonderful as it is....is not equipped to handle pediatrics in a critical situation. They aren't set up for Pediatric Intensive Care Unit....We hope someday, they will be. Even so....we are forever grateful for what they did for our girl.


For the next 2 hours....they attempted to get an IV in...and failed over and over. They needed blood cultures, and to start medicine. She was poked more times then I can count. David and I held her perfect little fingers. Whispering over and over that she was the bravest girl we knew. Even through all that..... She didn't cry.  She would squeeze our fingers and cringe with each poke. We stood close by. Rubbing her sweet arms and legs.

At this point. I started panicking. More and more people were flooding into the room. Her blood results came back and showed her CO2 levels way over double what they should be. Meaning, her body was becoming dangerously toxic.

Life flight was dispatched...but would take over an hour to arrive.


They attempted a CPAP machine, but didn't have the right size for her. With her numbers continually increasing, they had to get her intubated. Immediately....

David and I moved to the foot of her bed...and watched them attempt 3 separate times to get the breathing tube in. Failing each time. Her oxygen would drop close to 0.....and they would need to bag her back to breathing once more. Something that still creeps into my nightmares.

It was then my heart began to feel like glass. And the blows it was sustaining....were shattering. 

By nothing short of a miracle...Adalyn didn't seize that entire time. Almost as if....amid the all the chaos...Angels were carrying her. 

I stepped outside her room and couldn't fully breathe. Her room had over 20 people attending to her. Carts were surrounding the room...drawers haphazardly pulled out...

By 8pm...Life Flight finally arrived. They had got her stable by this point...and hooked up to the ventilator. They loaded her up into the ambulance...and off to the airport we went.

By 9pm....we were wheels up in the air. The dark of the night seemed to match my fear of what was to come. David and I could hardly exchanged words...mostly just utterly panicked looks. Tight hand squeezes. And tear filled eyes.


I stared at Adalyn that entire flight. Somehow trying to will myself to wake up.

By 11pm...we were taken to the PICU at Primary Children's. Once more, a team was already waiting for us. Right as we got there, David and I were pulled aside by two doctors. They told us because of her history...there were no guarantees she would make it through the night. No guarantee that she could recover from this...

I wanted to throw up.. I couldn't even find the words to respond. It felt like there was no air to breathe in the room. I was waiting for someone to say the words "Just kidding, false alarm!"

But those words were never said.

After midnight, Adalyn was all set up in her room. All was calm. She was sedated pretty heavily...and for once...able to sleep somewhat peacefully. David went to try to sleep for an hour in the parent sleep rooms..

I sat next to her bed....watching the mechanical rise and fall of her chest on the vent. Soaking the side of her bed with my hot tears. I laid my head next to hers and held her hand. I kept telling her I wasn't ready for this. I wanted her to know how much I needed her. How much we still needed time....

The next morning, her neurologist came to see us. Right as she walked in, she wrapped me in a hug...and once again...I sobbed. Again...we had to begin discussing what this all meant....This event didn't necessarily happen because of a sickness alone. Her seizures caused her to aspirate.. until the point that her lungs collapsed. Which was why it was onset so suddenly.  They could get her lungs cleared....but for some reason...her lungs were not in great shape to begin with. They were too stiff. And not exchanging oxygen well. Neurologically...even not taking into account her seizures...it would be uncertain if her body could return from this. Add her progressive, unstoppable seizures...and the outlook continued to darken..

At this point...her seizures had returned. Sedation...and 3 separate rescue medicines weren't even stopping them completely.


We would be there for the next 6 days... though honestly...in felt like one giant....long...horrific day. 

David and I would take turns every so often, sleeping for 1-2 hours. Yet without fail...we would have nightmares the moment we fell asleep. Nightmares of losing our Adalyn...

Waking up did nothing to remove those nightmares. 

It's odd the things the mind remembers... I remember frequently people commenting the fact I was wearing sandals with it being winter. We lived in St. George....and a life-flight trip wasn't exactly a planned part of our day. I remember the hum of her machines. I remember the smell of the  bed we had to sleep on. I remember the yellow subway tile in the parent showers. I remember how quickly it seemed that our "troops" assembled. Our incredible family dropped everything  at a moments notice to support us. Our friends were amazing... We were flooded with messages of comfort and prayers. Even people we hardly knew dropped off baskets of snacks and packages.



For the rest of my life, I will never forget that...I will never forget how it felt to be on the receiving end of the goodness of so many. 

I remember sitting in the bathroom, pleading with God to let me wake up.... to let this just be a dream. Pleading with Him for more time. I needed years and years more to love on her. 

I remember aching to hold her. Wanting to wrap her in my arms and pretend the world around us didn't exsist. Instead..having to settle for just rubbing her head, arms and legs...holding her sweet fingers.


I remember them telling us....that absolute best case scenario...we would have up to 3 weeks. 

I remember the moments Adalyn would wake up....look at us...and instantly wash us both over with the calmest of feelings. How was it possible that a girl so small....so fragile...could be the one to remind us to have courage? To remind us of her love with such simple hand squeezes? How could it be that she was the one to hold our hearts together, when our world felt like crumbling?


Honestly.... I have never been more afraid in my life than I was those days. In fact....a year later...I'm still scared of those days.  I still feel like I can't fully breathe when I think of them.

In reflecting of that day....I feel so overwhelmingly proud of Adalyn. She was the calm in the middle of the hurricane. I feel so humbled and grateful that I get to be her mom....so grateful for all the things her beautiful, perfect, soul teaches me. I'm beyond convinced she is among the bravest and most graceful souls to ever live. Her middle name Grace couldn't be more fitting for her. She fought the hardest of battles...yet did so with so much grace.

I couldn't prepare for what was to come. Neither of us could. Yet....somehow...in the middle of our deepest darkness...Her light remained constant. Her goodness remained so pure. Her love...remained so full.

Even today, that hasn't changed one bit. 

November 2, 2016

Just Be Held.

For most of this year, I have worked to push the thoughts and events of last November to the back of my mind.

I thought time would stop....or freeze....and that certainly there was no way November would come again. (I'm not always the most rational). Yet here it is. And my heart....my heart is full to the brim of emotions. Almost to the point that some days, it simply hurts to feel.

There were so many days last November that shook my world to the core. Especially the first two weeks. I know it's time for me to face those feelings. And as always...I do that best through writing.

November 2, 2015:

Adalyn turned 6 months. "Monthies," as I referred to them, were a big deal for us. Each passing month was a tender mercy. We clung to the gift of time. David's amazing mom had the idea of having a small party for her. A "Half-Birthday" party. We thought it was brilliant.


She even baked the most perfect half-birthday cake. 

I loved it.

That day....Adalyn had some stretches of awake time. Which was incredible for her. We adored just getting to spend time with her. Nothing more was needed. Her seizures had progressed so severely by that point. Even now, there is nothing I hate more than seizures. They took so much from her...especially as they became more life threatening...and we were helpless to stopping them.


Her simple party was perfect. She slept through the whole thing! We sang her "Happy Half-Birthday" and ate her cake.

Little did we know....this would be one of the last days before everything would take a spiraling turn for the worst. How could we ever process that we would only have 11 more days with our beautiful girl?

I think of that now....and I was to run back in time and shout at myself to hold to every. single. second. To memorize the sounds...smells..feel of each moment. As if doing so would stop that day from coming.

How is it that we are here now....a year later...coming up on that heart-wrenching year mark? And in the same month....welcoming a new baby? 

As I was driving a few days ago....I turned on the Christian radio. I don't remember the song...or even the tune...but shortly after turning it on I heard the words "Stop holding on, and just be held"

That has rang in my head ever since. As I think of our lives...this month....my feelings...and all that is to come....I feel like I'm scrambling to hold on to everything. Thinking that somehow, if I can hold on to everything....I can control it. As if I can stop anything bad from happening.

Yet the more I try to hold on to everything....the more my feelings seem to spiral away from me. It's as if I'm trying with all my might to pick up the pieces of my fragile heart...to hold them close. The more I try, the more the pieces keep dropping out of my hands.

Thinking of that simple line has made me realize that I just want to be held. To be held in the love of our sweet Adalyn. Held in the constant love of my husband. Held in the tender comfort of our growing little boy... 

Held in the hands of God....who will never drop or lose those fragile pieces of my heart. 

So that is what I will try to do as we reflect on these days. I will try to just be held. Knowing that even in the hardest of moments, love was our constant. We were never left alone.

Happy 18 months Addie baby! To say I miss you is the most drastic understatement.
Stay extra close my darling. I'll be looking for you. 

XO

Mom


Here are some picture highlights of the end of October last year:







So perfect!


Also....thought I would share my ever-growing self!