Audrey's Story
ANNABELLE JOY
My story is unique... just like every other child, mother, and father that have navigated this treacherous road.
It started Fast. My husband & I were about to choose a performance route oversees; when we found out that I was with pregnant! It was a shock, but definitely something that we had wanted.
Being my first pregnancy; all of the moments were so vivid. The lows of morning sickness to the Vibrant Joys of finding out its a Girl. I LOVED feeling her move around in my womb!
The Whole process of a child coming into this world is nothing short of a Miracle.
After many birthing classes, and much preparation.. the unexpected day came for little Annabelle Joy to make her entrance into this world!
What an Experience!
This was not the “normal” labor. However; She did arrive safely into this world on September 13th, 2010.
I’ll never forget this one powerful moment. My husband & I were looking at her perfect little body as she lay there so peacefully in her little bassinet. We were listening to a song my husband had discovered. This Song was written from a father to his daughter; Annabelle. We sobbed as the chorus of the song played over again; “Sleep tight Annabelle; you can always count on me.”
We were in Love. ️
Motherhood was quite a shock for me though.... Much harder than I ever gave thought to: balancing a new life, new schedule, trying my absolute BEST to take care of this tiny little human....It was quite the adjustment.
All was Well though.
Annabelle was born at 7lb. 13 oz... Perfection.
As we visited her pediatrician the next few months her weight gradually increased.
Normal.
So it seemed...
And ....She had just the Funnest Hair! It was thick, but often stood Straight up :). Whenever her & I would greet someone at the door; they would always say..”Look at that Hair!” ;) ️
Then something happened..
At her regularly scheduled 2 month vaccination...I decided to give my little Annabelle Joy the Rotavirus Vaccine….. I remember discussing it with some mommy friends of mine & them recounting stories of little ones that did not receive the vaccination & suffered for months with the illness. I also will never forget asking my pediatrician what she would do, and without skipping a beat she responded with,
“If it was my child; I absolutely would.” ... so I did…And little did anyone know that by this simple seemingly protective act; it sparked a chain of events that was the beginning of the end.
You see.... you are NEVER supposed to give a live Virus to a child with a Compromised Immune System.
The problem was that NOBODY knew.
Not only did my little Annabelle have a Low Immune System.... but she had NO IMMUNE System.
Annabelle was Born with a Disease that is more commonly known as the “Bubble Boy Disease.” You may recall a movie from the late 1970s where John Travolta played the leading role in the film titled; “The Boy in the Plastic Bubble.”
This is the Disease that our little girl had.
.....AND WE HAD NO CLUE.
................THE DOCTORS HAD NO CLUE!
It is a Genetic Recessive disease. The Correct Diagnosis for Annabelle was actually ADA SCID (SEVERE COMBINED IMMUNE DEFICIENCY). The next few months progressed, and looking back...I wish I would have known...but her symptoms were minimal..... About a month after receiving the rotavirus vaccine; Annabelle developed a mild case of REFLUX. It was almost undetectable. It was definitely not out of the norm. Soo many babies have reflux.
I remember the Reflux getting worse around Christmastime.
Eventually at her 4 month check-up Annabelle was marked “Failure to Thrive” because her weight had dropped a few ounces from her previous check up.
I again remember talking to momma’s & soo many people that brushed it off...... Saying: “Dr. charts aren’t accurate...every baby has a different growth curve, look at you - you’re small; so is she, etc. etc.”
-But my momma instincts were Heightened...”What is Wrong with my Baby?”
I remember feeling so alone trying to figure this out.
My very caring, loving family lived several states away; so I was taking her to these Dr. Appointments all by myself.
We saw a pulmonologist, gastroenterologist, and had her tested for all types oh diseases.. The major one that they were leaning towards was Cystic Fibrosis..
I’ll never forget the day when the results came back NEGATIVE! AHHH... me & her Celebrated, but little did I know that my precious little girl was suffering from something SO MUCH WORSE.
It wasn’t until the evening of January 31st that I began to feel like something was really wrong. However; January 31st was my Husband’s Birthday. So that night she gave him a card (a picture forever cherished) & the Next day I took her into the hospital.
I needed answers.
I wanted answers.
They checked us in, and ALMOST sent us home.
It was February 1st. 2011. If it wasn’t for the fact that her oxygen was a bit low, we would have gone home. After her levels were restored, they again almost released us...if it wasn’t for the Amazing & caring Dr. on Call that night...we would have been sent back. Instead, he listened.
He heard my story.
He analyzed all the places we’ve been, tests taken, & was trying to put the puzzle pieces together.
There were basically two options I was told:
She’s aspirating into her lungs
She has some sort of Immune Disease ..
These Days were so long.. I could take pages to right about each....how she was transferred from pediatric to pediatric ICU....then transferred to a different hospital when an amazing Dr. finally noticed something that resembled a form of SCID.
THAT DAY WAS TOUGH.
My husband was working, and I was alone with Annabelle after a long night of trying to nurse in a cold hospital room with her hooked up to all kinds of IVs & machines. Suddenly a swarm of Drs. Gathered outside the door. I could hear them talking. I knew it wasn’t good. Then they entered. They asked if their was anyone else I would like to call that could be there with me as they shared the news of what they projected my little girl to have. I could not get a hold of anyone. My husband was on stage. By the time he had gotten off; I had already been informed of the disease, and we were being transported to a different hospital. My brain was traveling a like a minute, as I tried to comprehend all that was happening with my little one. Tears, massive tears began to fill my eyes.
As I sat there with the Drs. My mind journeyed so quickly from understanding, to anger, to grief, to feeling completely overwhelmed.
Within an hour that felt like a day; Annabelle & I were loaded up into an EMS and transported to All Children’s Hospital In St. Petersburg, FL. This hospital was equipped with a pediatric immunology department that I was told could treat her disease. The ride was long.
However, We arrived at the new hospital with new hope. All the doctors were optimistic; except the pulmonologist. Because of her weakened immune System PCP phenomena developed and spread very quickly.
Within days we had to make the HARDEST DECISION OF OUR LIVES...
Basically, there was nothing left or any treatment that could save our little girl. The only way to create some time & allow her body to rest until her lungs healed up was to place Annabelle on a Heart/Lung Machine. The chances of her even surviving the surgery to set her body up on this machine were minimal. Then once being on the machine, there was a list a mile long of the possible and very likely long-term complications. Paralyzation, mental dysfunction just to name a few.
Ahhh
It makes me cringe just thinking about it.
It draws so many tears to my eyes.
No parent should have to endure these things.
No parent should have to make these kind of decisions.
However, in our situation a decision had to be made.
After much prayer, much seeking the Lords Face, and looking in his word for an answer.... we peacefully decided to give her the best chance that we had (the Dr’s said) to save her. There was much Rejoicing when we got news that Surgery went well, and she was out. It seemed as though we had climbed a mountain!
However: the quite opposite was true.
From that moment on; my little girl never looked the same. Her body was fully being kept alive by machines. Huge tubes coming out of her little body. Gashes from the surgery. It was heart breaking to see. Entering in that room in the PICU ... HOPE seemed Lost.
Annabelle was not on this machine that controlled her life for long.
On of the great concerns and possible complications was the machine getting an air bubble.
I’ll never forget the morning of February 10, 2011; I walked into little Annabelles room & was kindly escorted out. Something had gone wrong. There was an air bubble in the machine. Commotion everywhere in the room.
We watched.
We waited.
We prayed.
We cried.
A few hours later; the doctors called my husband & I into a room to tell us the words that No Parent wants to hear..... there’s nothing Left that they can do.
The Inevitable will happen, and my little girl will pass on this day.
The next moment I walked into that room......Grief overcame me. I LOST IT. I I WAS INCONSOLABLE. The sound of death through my tears and my cry were so heavy & loud. Hope was gone. Death had arrived. As I stood there wailing... my husband came to comfort me. Through loud groans and pains we eventually managed to sit on the coach behind all the machines that were in the way between my daughter and I.
I’ll never forget a conversation that arose between The nurse that was on shift that day whose only jobs was to monitor those machines and me. She kept saying how she’s so sorry that science couldn’t heal my baby. EXACTLY. I wanted so much to talk to her about Jesus in that moment, but I was broken.
It was awful.
Over the next few hours...people came in to lay hands on our little girl & pray & pray Hard...
It was THEN, during one of these prayers as I was stating scripture on the prayer Shaw that our Lord transported me (my mind) to a Wonderful place.
I had a Vision.
My body felt nothing but warmth.
In my arms was My beautiful little Annabelle Joy.
The light that we were approaching felt warmer & warmer
&
Then suddenly, peacefully, gloriously...
Jesus, LOVE in the flesh.
I reached out my arms, and willingly handed my little girl over to Him.
HE reached His loving arms out.
He took her carefully.
He HAD her now.
THAT was the MOMENT.
THAT was the time and space that my little girls Spirit departed from this world and entered into the next.
It wasn’t scary or ugly.
It was beautiful.
It was peaceful.
It was how it was meant to be.
And it was all that this Mommas Heart Needed to know that She is No Longer With us, but that She is In GOOD, GOOD Hands
No more sorrow, no more tears....
I did not come out of that room the same.
Her body technically was still hanging on by a thread, but her spirit...I knew her Spirit was Already gone.
In a few more hours; Annabelle Joy was declared officially deceased.
The days ahead were still met with much trial & hardship....but the PEACE...that deep rooted PEACE would spring up out of the grief.
If you have lost a loved one; an infant that was taken far too soon from the dreams and plans you saw for them .... my prayer is that through the tragedy and the pain - you experience this Jesus. The one who has conquered the grave. The one who is Victorious IN DEATH & IN LIFE. I pray that you would meet him face to face and receive that PEACE which SURPASSES all UNDERSTANDING!
He is a good good father, and I believe he’s got the Whole World in His hands.
