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.

"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. 

When a Heart Breaks

I have spent so much time this past month reflecting.... Reflecting on each day of May last year. I knew this month would bring up a lot of emotions, but I wasn't prepared.

A sweet friend told me recently that during hard trials, or traumatic moments....we sort of go on auto pilot. It is a type of numbness that helps you get through the days you are facing.... A year later, my "numbness" from last May has worn off...

I shared a handful of blog posts last May...but there were many times I didn't have the heart to include everything...Times when I couldn't find the words to convey what my heart felt.. So, I'm going to go back to last year in this post. Back to many of the moments when I felt completely broken.. 

Just two short days after Adalyn was born, she had her a MRI..we wanted to believe so deeply that everything would look much more hopeful. Instead, we got the opposite. I remember three separate doctors walking us into a room..and feeling immediately scared. The look on each face spoke volumes about what was to come. Adalyn's brain was not compatible with life....best case scenario...if she never were to develop seizures or other conditions...we could hope to have 3 years.

I wanted to throw up. I felt like I was hearing underwater...and not able to process what they were saying...

As they left us in the room to hold each other and cry....As broken as we felt, we made a resolve that we wouldn't believe in statistics... we would believe in Adalyn. We would take each day...and hope we all we had for a miracle.

That night, I was discharged from the hospital. We stayed at the Ronald McDonald house close to the hospital (a place that will forever hold my heart).

As time would have it...David was getting ready to graduate from Physical Therapy school. He was required to be down in Las Vegas to finish and present his research project. Every part of me hated that he had to go. We had no idea of what to expect....what was to come. Luckily, I was blessed to be surrounded by physical angels. My angel of a sister stayed with me each day David was gone. David's sweet sister Aimee visited frequently...and we had such loving friends.

We love Aunt Amber! 

We had thought we were most certainly at rock bottom. The only way to go would be up.... Or so we wanted to believe.

The first two weeks of her life....almost each day another doctor would come talk to me about what they thought Adalyn's life would look like...again going over life expectancy...scenarios..etc. Most of those visits I wanted to scream. No one should ever have those conversations about their sweet babies. I had had to hold Adalyn down countless times for different tests and procedures, and felt my heart break with each of her cries. Each day was such an emotional uphill.

Through it all, we held to Adalyn. She was the strong one. She continued to develop abilities that amazed us

David was able to come back on the weekends...he always is my comfort. In hindsight....I still kick myself for not realizing how sick he was too.... He had hardly eaten for almost two months. He didn't have an appetite. He would eat a few bites of food...and be full. He had pains in his stomach...he couldn't walk very far without being short of breath...and his color slowly turned more and more yellow.

At the time, we just told ourselves it was stress. If you could think of just about every possible major stress people face....we were facing it. I mean, not just were we facing bringing a new child into the world...she was medically fragile. David was graduating. We didn't really have a home. Or a job.

Needless to say, our eyes were blinded...and we just assumed he had ulcers. We couldn't have been more wrong. In fact...a week before we found out what was really going on with David I had said."David...you have to stay healthy. There is no way I could handle you being in the hospital too."

As the end of May came, we had started feeling more hopeful. David was done with school. Adalyn was doing amazing at eating from the bottle....we hadn't seen any signs of seizures...We were even talking about getting ready to go home...we had almost ruled out Adalyn having to have surgery for a G-tube.

I love looking at pictures of her with her special bottle. She worked so hard! 

I felt such hope that we would go home and thrive....that the three of us could beat the odds we were up against..

However...all of my hopes came crashing down in a matter of days. Those days still haunt me....still have the ability to bring up all of my helpless insecurities.

Adalyn had a swallow study to make sure she was swallowing correctly as she would eat. We weren't even worried about her not passing it. But during the test, she showed signs of aspirating her food... Meaning some of her food would go into her lungs... The tech fed her so much at once that Adalyn threw up all over... She was so upset. I wanted to grab her and run away... Again we were left feeling heart broken...she loved eating from the bottle. It was hard to take that away from her. Hard to imagine sending our sweet little girl into surgery.... We left that test in tears....only to get hit by another metaphorical train.

Quite literally by the time we got back to the NICU with Adalyn, an EEG team was there waiting for us. We had seen signs of seizures for a couple days, an EEG would confirm if they really were.... We desperately wanted to hope it wasn't. Once more, we had to hold our sweet girl as she was hooked up to dozens of wires...

Within an hour....they confirmed she was indeed having seizures. I never knew of anything I would grow to hate more than those awful things...

That night, the pharmacist came to give Adalyn her first dose of seizure meds....Ironically...that morning I had joked with her about how we were her easiest patients because Adalyn wasn't on any medicines.... Once more I sat eating my words as she cried with us...and explained what they were going to give..

We left the hospital that night feeling like our legs had been knocked out from under us...We cried and cried for our beautiful, sweet girl...Those helpless feeling had hit us heavy that night.

The very next day....David thought he should go get his "ulcers" checked out....and I went up to be with Adalyn.

I got a call from David...his first words were..."You're never going to believe this.." I laughed. Thinking it must be something simple.

His next words were that he was heading to the emergency room. 

On his way to the ER....he was able to briefly stop to see me..... at the same time Adalyn's neurologist came to talk to me about what seizures meant for Adalyn.

I felt like my world was crumbling as I held her..watching David walk away.. Tearfully trying to listen to what her doctor said.. Trying not to let myself process David's news yet... Trying simply to remind myself to breathe.... As soon as her doctor left I quickly put Adalyn down, gave her a kiss...and went down to the ER.

I walked into David's room and felt my fears hit me like another train. Seeing him hooked up to everything made my heart sink... As it would turn out... David was in multiple organ failure... He had fluid backed up everywhere. His abdomen was full of fluid..and his lungs... He was in severe heart failure....his liver was failing....and his kidney's weren't in great shape...

By the time I got there...the Heart failure/transplant team had been notified. The first thing I could find to pipe out were.."Is he going to be okay?" Dr. Gloom....(how I like to refer to him...due to his bedside manner....) Said.."There is no way to know at this time. Look at him... He looks awful. Look at his color. Look at his legs... See...pitting edema...." Needless to say....he brought all my worst fears to the table.

The whole time... David was squeezing my hand trying to whisper... "I'm okay...really. I'm okay."

I felt like screaming....no....it's not okay! You're not okay. This isn't okay.... How can anything be okay?! 

Still smiling...even in the hospital. That's David for you. 

A few minutes later...I found a bathroom....and sobbed. I couldn't even find the words to pray other than "Please......please help." My world was hanging in the balance. The two people I loved more than anything were fighting for their lives....and I could do nothing for them...


In a matter of a few days, David went from being 150lbs....to a big 128 lbs. At that point, I felt like if someone had asked me where we lived....I would have honestly said the hospital...because that's where we were all staying...

The allowed David to come down to the NICU to visit Adalyn....I think each of our nurses and NICU team cried each time they saw David come down. We were quite the sight those days..

The next couple weeks....I would be carried by strength other than my own. Honestly...even a year later, I know it was not me that got myself through those days. Adalyn continued to teach me in those days about what courage was...  I still am at a loss to describe how it felt to send both my husband and my daughter into surgery a day apart. David, by a tender miracle, would make a full...and amazing recovery...(after losing almost 25 pounds of fluid)

Taken about a week after their surgeries. She loved naps with her Daddy!

Little did I know, even then...what would be in store for us as the months continued. Little could I be prepared for hardest good-bye we would ever have to say as the year came to an end.... 

I don't know if you've even made it this far in reading....I guess I needed to write all this down for myself... The thing is...those moments last May...and many after during last year....changed me. In every possible way. There are nights I still wake up in a panic..feeling like I need to see if my husband is okay... Nights when I replay memories over and over... Days when I feel okay...and then suddenly am over come with panic..

I share this because...yes, last May held dark days..but never had I felt such an outpouring of love. A love that would continue to carry us. From our nurses...who held me and cried....from incredible friends who showed up with baskets of food...hugs and comfort.....to our incredible family who never failed to show up...who always helped to carry our struggles.

Never did I realize that there would be people praying for me...for us...when I couldn't find the words to pray. Never could I have known that our absolutely perfect little girl would find a place in countless hearts....and help us to be filled with the courage to take one more step. 

No matter what the days held, our comfort was Adalyn. She loved sucking my finger much more than binkies!

There are still many things that scare me. Many things that I am re-learning about myself....and many breaks in my heart...

But one thing I know I can say in reflecting on last May....and many months follwing....is that I'm slowly learning what happens when a heart breaks. God doesn't leave us when those moments come. God stands beside us with each break. He weeps with us...and His love is one that never fails. We will have days....months...and maybe even years that break us... that seem to shatter every part of our heart... but God will never lose those pieces of our heart. He will build us into something even greater. His love will be the gold that fills each crack. Each break.

He knew how much we needed Adalyn. He knew her life wouldn't be easy....but He knew her love would be an incredible and life changing gift for everyone who had the chance to know her. Especially us. 

Last of all....in thinking of last May..I realize how precious and fragile this life is.. I truly realize the gift it is to have another day with my incredible husband....to have held our sweet little Adalyn for all her time here...to have spent nights awake with her...to simply have had time to give her baths...kiss her toes...sing her songs....go on walks... All of it.

Miracles still happen. Even if it isn't the miracle you expect...or think you want. 

So once more...here is to you, my darling Adalyn. What a life you have given us.....what love you pour into our lives. I miss you always....and see your beauty in so many things. You are and will ever be the greatest gift of our lives.