Wednesday, March 26, 2014

This baby boy was born with a fatal heart condition... you'll never believe what happens next (Miracle #5)!

(The title... isn't that 'in' right now?! So sorry... I couldn't resist, but you really won't believe what happens ;-))

If you're new to Hunter's Story;
Miracle #1
Miracle #2
Miracle #3
Miracle #4; Part I  and Part II 


I remember fragments of that first phone call... 

"2 pounds... Hydrops Fetalis... heart anomaly... brain bleed... kidney failure... liver failure... metabolic disorder... Cerebral Palsy..."

and so much more.

The truth? None of it registered.... the only thing I heard?

"He needs a family.... he's your son."

I've mentioned before...

So many people thought we were stupid... how could we voluntarily 'sign up' for a baby who had so little hope for a future? He was broken... and in medical terms, broken beyond repair.

I'd like to say that our faith was strong and we knew, even then, that God would heal him... would give him a future... that he would celebrate turning 1 year old... that he would walk... and run... and talk... that one day, he would even recognize us as his.

His family.

But i'd be lying if I claimed that our faith was strong or that we firmly believed that God's plan for him was greater than the hundreds of pages of death sentences in his medical records.

All we knew was that we were a family that was aching for the one who was missing...

and he was a baby who was fighting for his life... without a family.

And so it made sense to us... and we went.

We walked into that tiny NICU room, blinded by the darkness of the hallways and deafened by the sounds of life support and heart machines. Those sounds represented life... and also death. 

As we neared the very last pod... the one that held a precious, 3 week old baby... what we didn't know was if the sounds that grew louder as we grew closer represented life... or death... for the life struggling within it.

Those moments are nestled in a part of my mind that registers so vividly that I believe it all happened just yesterday.

His primary doctor sat down and asked us to listen carefully as she tried her best to 'explain' the tiny baby who was now staring deeply into my husbands eyes...



She explained about his brain bleed... the discrepancies in the size of his kidneys... the dangerous levels of biliruben in his liver... the damage done to his intestines and muscles by the fetal hydrops... how his prematurity and low muscle tone put him at huge risk for developing CP... how they already believed that he HAD CP... his irregular heartbeat and the measures they had to take moments after birth to fix it... the repercussions of the measures they took to save him... the dozens and dozens of medications he was currently on and would soon be on... how long she believed he would remain in the NICU...

and how she honestly believed that he might never leave.

His heart condition... the one they knew he had in utero... and the reason they were surprised that he made it through delivery at all. How they hadn't really planned to have a baby to revive... to save... after delivery. How the NICU team was in place in the OR "just in case" they had a baby to help. She explained how broken his heart was... that he was facing numerous surgeries by the time he was school age... if he made it that far. How his activity would have to be limited as he got older... how difficult that would be for the parents of a boy... no sports or running. 

It was terrifying.

Only moments before, as Joey held this precious baby boy in his arms, we had exchanged 'the look'. The one that secured this baby's place in our family.... in our hearts. 

It had been decided.

He was ours.

But as her explanations grew longer... as her description of his 'outlook', of the kind of life he would lead, of the number of open heart surgeries he would have and how those surgeries would only buy him time, not a life... it was his heart that caused us to pause...

caused us to rethink.

Because that's the thing about adoption, friends... it's so nice to think that your baby has been chosen for you and that you really don't have a 'choice'... but you do. You do get to 'choose'... sometimes, you get to say 'yes' or 'no'.

She walked out of that tiny corner room and left us to 'discuss' what we would do...

but we didn't discuss anything.

We started at him... memorized him. We marveled at how such a tiny baby could be stronger than either of us could ever hope to be. We watched him breathe... realizing what strength and effort it takes for our bodies to just breathe. We noticed that his eyebrows and eyelashes hadn't grown in yet, he didn't even have nose hairs, his fingernails and toenails were there but they were different... they were too new, his movements were mechanical... not intentional, his eyes...


his eyes.

They were wise. They knew something that we didn't...

and that's when we knew;

We wanted to be the one's who were around long enough to find out what.

For however long that might be.

We knew that we would never be 'ok' with knowing that his life would be short... never knowing how much longer we had with him. But we also knew that we would love every second we did have with him... and if we had learned THIS much in the few minutes we had spent with him, then we couldn't even imagine what more we were going to learn from him.

And all he needed from us... was love.

And we could do that... so we said 'yes'.

But that heart...

It was the one thing that was definite... they could transplant a kidney or a liver, vigorous PT could help with the CP, hearing aids could help with hearing loss, surgeries or medicine could help the brain bleed, an apnea machine could help us at home... 

but the heart; surgery could buy him some time... but it was the one thing that couldn't be fixed.

It was definite... but it was a ticking time bomb.

Literally.


(If you're unfamiliar with Hunter's Story, now is the time to catch up... 
Miracle #1
Miracle #2
Miracle #3
Miracle #4; Part I  and Part II )



Especially Miracle #2.



But then, last year our baby boy turned 1...


And he wasn't supposed to.


Hunter's cardiologist follows him closely....

his irregular heartbeat, a displaced tricuspid valve, a leaky valve...

they're all there.

They've been there.

Never cause for immediate alarm...

still, haunting.

I took Hunter to his usual, routine check-up with his Cardiologist last week....

It was business, as usual....


These appointments always go the same way; EEG, heart ultra-sound, physical exam, discussion of the day's findings, 24 hour holster monitor is put on him, and we go home.

This visit...

was different.

After Hunter's EEG, the nurse left the room... without a word.

My heart started to pound... I was sweating...

the walls were closing in.

Hunter's doctor walked in... finally.

She listened to his heart... with him standing up... and then laying down.

She walked to the computer and pulled up his EEG...

she wrote something down.

I felt the walls closing in...

something was wrong.

"Is something wrong? I'm getting nervous..."

She sat down and wheeled her chair closer to the table where Hunter and I were sitting...


"I'm so sorry... It's not my intention to scare you."

She was quiet... gentle.

"I wanted to be sure I had all of the information I needed before talking to you..."

Here it comes...

"I looked over Hunter's EEG and compared it to the one we did a few months ago... I considered doing another ultra-sound, but after listening to his heart myself, I am confident when I tell you that....

Hunter has...

completely normal cardiac function."

.......

"He has .... what?"

.......

"I know it's hard to understand... it's hard for me to understand, too but this is Hunter, after all. I want you to know that I would never say something like this if I wasn't 100% certain of what I was telling you. And I am 100% certain that Hunter's heart is functioning just as well as yours or mine."

......

"His heart... it's... normal?! What about his tricuspid valve and heart surgeries? The leak? Sports? He wasn't supposed to live and...."

.....

"I know. And you're right... those things were all true. From a medical standpoint, this is a phenomenon. Impossible. But we know Hunter... and we know the miracle that he is. His heart is normal, Mrs. Smith. That's all I know for today. I'll see him again in a year. Enjoy your son, Mrs. Smith... he's going to be 2 years old next week! And he'll have so many more after that."

.....

She hugged both of us... but held onto Hunter for just a little longer. She smiled as we walked out and as the door closed behind us, I heard her whisper to the nurse...

"He amazes me."

And though I knew that the doctor in her was referring to my precious boy, our miracle..

I knew that the real her was talking about our Jesus.

........

The past 2 years have been a roller-coaster of ups and downs... unknowns, mixed in with the promises and truths that Jesus has planted firmly in our hearts.

These 2 years have consisted of emergency room visits, moments when we all needed reminders to breathe, therapies of every kind, CPR, Heimlich Maneuvers, asthma treatments, ear tubes, hearing aids, viruses we thought would never end...

first steps, climbing in drawers, throwing balls, running, tantrums, eating sheet rock, eating dog food, eating... everything, wrestling, learning to talk....

And last weekend we celebrated Hunter's 2nd birthday...

another one that never 'should' have been.

With his 2nd birthday, we are reminded that the miracles that explain Hunter's life are no longer what define him...

because he craves human touch, relaxes when a warm cheek touches his, thrives on routine and predictability, loves doing everything that he shouldn't, thinks that no one can see him if his eyes are tightly shut, loves to walk sideways or backwards or in circles, can pin his daddy on the floor, thinks that the word 'meatball' is hilarious, idolizes his big sister and craves her attention, does something silly and looks to her for the first laugh, always makes sure mommy and daddy know when he does something well, thinks that Princess Sophia is cute, has the most contagious laugh, and has a smile that can brighten anyones day.

That... is our son.

Hunter.

Our fighter.





No miracles would have been fine... the boy with heart and liver and kidney and hearing and muscle and speech and brain challenges... would have been a blessing.

This boy? These miracles?

We are honored that God chose us to be this boy's forever Mommy and Daddy.... we are underserving... and more than thankful.

And regardless of how God chose us to be his Mommy and Daddy, I'm convinced that the real match was made between a big sister and her little brother... 

His protector from day 1...



Happy birthday, precious boy... you have stolen our hearts and have changed lives! 

You are truly On Loan From Heaven.. we're just glad we get to keep you for a little longer than a while ;-)


7 comments:

  1. Praise the LORD!! So thankful for God's miracles!

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  2. JUST...... WOW......Jesus whispered in Hannah's ear the day Hunter was born. She always knew....... :)

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    1. She did! That girl scares me sometimes.... ;-)

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  3. I have been following your blog and FB for about 3 years now. A year and 4 days ago, we took a 10 hour drive to another state to pick up our youngest. I just took him in for his one year check up with the "regular" pediatrician today- who said he looks great. BUT... the real concern is in two weeks. With the gastrointerologist. Because baby boy "might" have a liver condition. He was born with certain indicators, but 25% of children outgrow them by 12-18 months. I can remember on the way out reading about your son's first birthday. And you actually taking the time to ask about our son. Not many people know the possible situation for our son, as it is currently only a "might be." But when everyone asks how he did at his one year check up, I am still holding my breath and saying prayers for the NEXT appointment.

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    1. Hi Laura! I remember you and your sweet boy ... that feels like it was so long ago (for me... probably just yesterday for you ;-)). How is he doing?! Out of Hunter's 17 specialists, there are 4 specifically that I just get sick to my stomach to follow up with... I completely understand those fears. I wish I could say they go away... I just don't think they do for us mamas :-/ Please keep me posted on how he's doing!!

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  4. This brought tears to my eyes! God is so good. Happy birthday Hunter!!!!!!!!

    Nella

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  5. This is amazing...every time I read your blog I cry. It's so heart warming and I have found it a comfort to me. I came across it last week and was up half the night reading blog after blog. I couldn't stop. My husband and I struggled with infertility. We finally did get pregnant...our first born had medical issues from the get go. He was diagnosed with Torticollis at 3 months of age and we were in PT for that. Then while he was in therapy they noticed he had some sensory processing issues and he started OT for that. At that time it was pretty scary..it was the first time they said the word possible "Autism" with me. I remember that day well. Panic and fear set in. I could hardly breathe. My son have Autism? I put it out of my head refusing to hear it again. Then when he started solid food he gagged and refused anything textured. He began Speech Therapy for his food issues. He was motor delayed..and wouldn't speak. We had intense intervention for his speaking which I am thankful for now, but it was a long road of sign language and working with him to speak. He finally spoke at 3 years of age and it slowly came. At 6 months of age he went into anaphylacitic shock due to food allergies. He is allergic to Egg, Peanut, and Milk. That was another whirlwind. At 10 months of age he got RSV and couldn't breathe suddenly. After an ER visit he was put on breathing treatments. He now has asthma and any virus could be life threatening. I have spent many nights sleeping near him to make sure he is breathing. He was finally diagnosed with Autism this past December. He is high functioning....but daily struggles continue. He still has delays but like Hunter..he is a fighter. :) He learns quickly in therapy and overcomes. Thank God for that. Though my journey is different....I have a special needs child and can relate to your journey. My husband and I have always wanted to adopt. It's amazing how much having a special needs child opens your eyes to others and how much your heart grows to love them. Special needs children are part of my heart now forever....and your Hunter is one example of Jesus' power to work the unexpected. I just love when the medical professionals can't answer "why" someone is healed. :) THey have no option but to look up. :)

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