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.
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.
