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.
