Undisputed Champion of the World...

Ummm... yeah...

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So as you can see, the Physical Therapy Appointment this morning went well...

Coming home...

I type with one hand while I hold him...

as he helps every so often from my lap.

fedasx

There that was from him.

We just wanted to share more amazing news!

We are going home today!

HOME!

They see no reason to keep him!

When they discharged us from PICU to NTU yesterday,

there was talk of sending us home.

But they wanted to watch his pneumonia one more night

and so we stayed.

He slept on my chest all night, wanting his mommy.

Forgiveness is sweet.

We are heading to an Physical and Occupational Therapy Session this morning

at the hospital's Rehabilitation Gym.

Then we will say good-bye to beloved friends,

pack up the zoo of assorted new bedtime pals and come home with out little miracle.

Just wanted you to know what your prayers have done.

Words are utterly useless.

None sufficient to express relief and gratitude of this magnitude.

But thank you.

THANK YOU.

Survived the Press interview...

{Insert BIG sigh of relief...}

They all seemed really nice.

I'd been worried...

Hoping they'd give things the positive spin they deserve.

But they were hoping for a story with a happy ending.

...This place needs one this week.

Thank goodness Bronson is the miracle they were looking for...

The miracle we were all looking for!

Oh, thank you Heavenly Father for granting us a miracle!

.

Sooo...
If you'd like to see our sweet boy on TV,

tune in to Channel 5 News at 6:00. Or Channel 4.

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Unfortunately, you'll also have to watch me ramble to the cameras,

wearing clothes I dug out from the bottom of my bag.

Clothes I've worn 3 other times this week and slept in twice, by the way.

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Will someone please DVR it for us?

Bronson will love to see himself on TV.

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And maybe someday I'll want to roll my eyes at myself on camera.

Gag...

I really hate to be on the wrong side of the camera...

I'd much rather be behind it!

Big Steps Forward...

As if we haven't had enough miracles...

This morning we've made another few big steps toward coming home!

B is walking!

He is playing fetch with his new favorite ball!

(Thanks, Auntie Krista!)

And he is off all oxygen and support and is on only minimal monitoring.

No one can believe it!

It is all smiles here!

Poor Little Bobble-head...

Brons has lost so much weight, he almost looks like a little Bobble-head!

Poor kid!

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But hey, we are just thrilled to see him, skin & bones, sitting up by himself

and holding up that big, giant noggin without help!

And seriously, look at those poor, tired, baby blues...

He can barely keep his eyes open!

Our little guy has just been through the ringer!

Cross your fingers for a good night's rest...

Heaven knows we could all use one!

Marching one by one... Hurrah, hurrah!

More playtime fun!

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A few small steps... giant leaps!

Just to keep things fun, I thought we'd tip you the other way, just to even things out...

(Sorry... I'm a photographer, please remember... NOT a videographer!)

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Here's B thinkin' he can just toddle right on outta here!

"Come on guys! Let's go!"

"Do As I'm Doing" happy time...

If you know Bronson well,

you know that his FAVORITE thing in the whole world

is the song "Do As I'm Doing".

That little turkey will come running from anywhere in the house

as soon as he hears anyone singing it...

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So when the big bros came for a visit last night,

they just had to have some play time!

So fun!

Sweetest smile in the world...back again...

Sorry this is sideways... I am too tired to try to figure out how to rotate it.

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Just tip your head sideways and enjoy! ;)

Words can not express...

I am speechless...

And you all probably know by now, that takes a lot...

Wow...

What a difference 24 hours can make.

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I'm not even going to TRY to describe.

Joy...

Pure joy!

AWAKE and back in our arms...

{Insert happy sigh here}...

He is awake!

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...and back in our arms!

Remember that hunch?

WE HAVE A MIRACLE HAPPENING HERE IN ROOM 2314!

I want to shout it from the rooftops!

My fingers can barely type,

I am shaking...

BRONSON IS AWAKE!

HE IS HERE!

HE IS LOOKING AT ME!

HE IS TRACKING THE TEDDY BEAR WITH HIS EYES!
HE SMILES AT ME WHEN I TICKLE AND PLAY WITH HIM!

HE REACHES FOR THINGS WITH REASON!

HE RESPONDS TO OUR COMMANDS!

WORDS CAN NOT EXPRESS...

HE IS IN THERE AFTER ALL!

LIGHTS ON!

HE LOOKS JUST LIKE MY BOY!

JUST LIKE OUR BOY!

.

Just a few minutes ago I came into his room.

I crashed hard-core last night.

Could NOT keep my eyes open any longer.

Slept too late this morning.

Can't remember the last time I slept that long.

I walked in his Room about 9:45 in the middle of an Occupational Therapy session.

They tried to get him to sit yesterday. It did not go well.

Today, they thought they'd try lowering the Precedex.

That darn Precedex...

About half an hour after they turned off the sedation,

he began tracking between the Occupational Therapist and his Nurse, Heidi.

They were shocked.

They tried to call me but there is no cell phone coverage in the parent sleep cells.

Then I slept through the overhead page.

Man, were they excited to show me when I walked in the room!

It was that Precedex.

I KNEW it!

It was the only thing I could think of as we'd poured over his chart looking for an explanantion.

Apparently even the uber-low dose they had him on was too much for his virgin blood.

(He's like his Mama... Just a couple tylenol will knock me out...)

The Nurse Practitioner showed me a text on his pager from our Nurse Heidi, that said

"Bronson is awake and surprisingly alert. Tracking. Sitting. There is no reason this kid needs to be intubated. You must come see! "

All the hospital staff and nurses who love him have been in to see already.

They are thrilled!

We called Daddy.

He wept.

He is driving as fast as he can to get here safely.

He told me of the prayers and scriptures he and our big boys had read together last night.

The tender prayers and the first fast of Bronson's sweet brothers have done this.

The faith of his Daddy has brought this to pass.

The prayers and faith of all of you, collectively petitioning Heaven on his behalf.

The will of God has been shown...

To use our tiny sweet strong and incredible boy

as an instrument in His hands.

To unite strangers and loved ones in faith.

To bear testimony of His love and His power.

We thank you for your prayers.

We thank you for the power of your fast.

We thank you for your faith and sustaining love and support from across the globe.

God IS a God of miracles.

Let us never never forget!
Let us never be afraid to share our testimonies boldly.

Unabashed.

I have a million things to share, but will keep this short, so I can go and be with my boy.

He is back!

Oh thank Heaven he is back!

Bronson's True Colors...

Just thought you might like to see what Baby Brons looked like

before all of the tubes and wires...

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I am a card carrying member of the Mamrazzi, after all.

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(For those of you who don't actually KNOW me, I own a portrait photography business.

My own boys are, of course, my very favorite subject matter!)

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These are Bronson's most recent True Colors Portraits...

A series of Monochromatic Images I created from his 12 Month Session

to remind me of all the expressions we love most at this age...

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Love, love, LOVE that smile!

Mmmm... mmm... mmm!

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He has always been a "watcher"...

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Big, bright eyes taking in the world around him...

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And then there's that tongue of his...

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Always out in concentration.

Just like his Daddy and his big brother Dayne.

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And this look of absolute, unmistakable worry...

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He was a born worry-wart. Made this face from birth. Literally.

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And his red-hot temper...

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Of all our boys, he has by far the shortest fuse.

He's pretty outspoken about what he wants!

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And then that crooked little grin with the contagious giggle...

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Oh, how I love that giggle...

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{Sigh}

I miss it tonight...

Wiggle worm...

Auntie Bugud, this is for you...

(before you go completely manic from the isolation and the not knowing...)

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Sorry this update has been so long in coming... it's just been a tad bit busy!

But I hope you'll agree it was worth the wait...

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We are still not back to where we were three days ago,

(no tracking yet, and still a lot of open-eyed blank staring)

but we are getting occasional eye contact!

Here's proof!

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As of early Saturday morning, Bronson has 2 new periphreal IV's.

Crazy how many times this poor kid has had to be punctured, poked and probed.

Also crazy how little I care about those tiny little things any more.

Before this, I would get all worked up about a tiny scratch or scrape on my perfect little child.

Let alone a big ol' nasty bruise.

But let's face it, once your kid has been on life support for a few days,

a needle poke seems like a whole lot of nothin'.

So, the IV in his right arm got a little leaky,

and they put a brand spankin' new one back into his left.

.

He passed his 9 am SBT with flying colors.

Perfect breathing without the ventilator for an hour.

But by 11, he was having increasing difficulty with his respirations, even on the vent.

He was pulling really hard with each retraction, getting more and more agitated.

I just feel so helpless to see him like that.

They took him off the vent long enough to bag and suction him.

I think I held my breath the whole time.

So, so scary.

The RT came and increased his pressure support back up to 12.

By noon he was relaxed and had started to get his color back.

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His brothers came for a visit around 2.

Bronson was in the middle of another SBT,

so we took a break while he slept and went up to the Children's Room with them.

Daynen just looks so big all of the sudden!

Why do they always wait to grow up until you miss a day or two of their lives?

Then they look so different!

Crazy!

Kaden made a paper mache mask and played in the arcade for a bit with Matt.

A racing game, I think.

Trevan colored a poster and then played Foosball with a hospital volunteer.

Daynen, well, he was Daynen.

He ran around like crazy and played with every toy he could get his hands on.

What a nut! I forgot how much he makes me chuckle.

Man, I miss those boys...

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Back up in B's room at 3, we found that he'd passed his SBT.

Yay! One more sign of encouragement!

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Then, late last evening, the RT felt it was safe to hold him.

It is quite a process...

They have to rearrange the room to accommodate all the tubes and wires.

Wheel the IV and Meds Pump Stand all the way around the bed.

Safety pin the vent tubes to your shoulder to hold them in place.

Position about 4 pillows to support him and all his miscellaneous paraphernalia.

Kind of a laborious task.

But definitely worth it!

I told Matt to go first.

Bronson slept through it the night before, but this time he became increasingly agitated.

We had to discontinue and settle him back in bed at about 11:30.

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We were all worn out. I could barely keep my eyes open!

We wheeled our big fat bags down the hall to the Parent Sleep Rooms

and looked for the Post-it Note marking our door.

There was no Post-it Note marking our door.

They'd forgotten to request one for us.

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Who could we call at 12:30 for a bed?

The gave us a list of hotels that offer discounts to PCMC parents.

Matt decided we should go home.

By the time we would call and find a hotel with availability, get there,

check in and get settled, we could be home, he said.

I get anxiety at the thought of leaving my baby.

That is how we got into this mess...

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I was exhausted.

I cried as we pulled our bags out the front doors of the hospital,

across the courtyard and into the parking garage to find Matt's truck.

The first time I'd set foot any farther from his room than the cafeteria.

Leaving our boy upstairs... alone.

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Matt phoned Alli and woke her up to warn her we were on our way.

We would just sneak in and sleep downstairs in our spare bedroom, he said.

We just didn't want to startle her coming in.

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I reclined the seat in his truck and cozied up in my blanket.

We chatted for the first few minutes of the drive, but then suddenly I woke and we were home.

Our wonderful, thoughtful Alli had changed the sheets on our bed and insisted we sleep in it.

I was too much of a wreck to argue.

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We slept like parents who haven't in a week.

We woke early. Before the boys.

Emptied our bags of dirty laundry. Repacked them.

Showered in our own shower.

Oh...

The shower...

Right by the tub...

I tried not to look at it as I walked past.

But as I finished my shower and went to step out, there was no bath mat.

Where was the bath mat?

Why did we have no bath mat?

And then I remembered it'd been covered in Bronson's breakfast during CPR.

Thank you to whoever threw it away.

I stood there, cold and shivering, trying not to remember as the scene flashed through my mind.

I could not stand there to get dressed.

There will have to be a new place now.

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Somehow Matt got me to finish getting dressed.

Kaden woke.

We had a sweet few moments, one on one.

Matt explained how to fast for strength.

Kaden said he might bear his testimony in church.

I asked him what he'd say. I wished I could be in two places at once.

We knelt and prayed to begin our fast.

We were in the truck ready to head back by 9 am this morning.

The neighborhood was quiet as we drove through.

I thought fondly, gratefully of my neighbors and friends as we passed each house.

Wondering when I might see them next.

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We called the hospital en route.

Bronson had slept soundly.

A sigh of relief.

We pulled in just before 10 am.

We wheeled our bags through the cold, empty hallways.

Smiling and waving to the now familiar faces as we passed.

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We went in to see our boy.

He survived another night.

Even without me by his bedside.

He's a champ.

Somehow I survived it, too.

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Sacrament Meeting is held in an auditorium on the 3rd floor at 10:30.

We walked into the room hand in hand to meet the warm, welcoming gazes

of doctors, nurses, parents, various patients and the angel volunteers.

It was a group of about 60.

We sang and we prayed with strangers we felt strangely akin to.

The Sacrament was blessed and passed.

I thought how broken our hearts were.

How contrite our spirits.

Now, more than ever before.

The Sacramental Prayers had new meaning as I heard the promises again with tender, new ears.

Oh, how grateful and unworthy I am to take His name upon me.

Oh, how I need to remember Him, always.

Oh, how I need His spirit to be with me, to comfort and guide me.

And oh, how grateful I am for His cleansing blood. Which was shed for me.

Just a handful of testimonies were born.

Humble. Touching. Powerful.

We both quivered as we tried to sing the closing song.

A familiar favorite, now with new and deeper meaning.

"Because I have been given much, I too must give.

Because of thy great bounty Lord, each day I live.

I shall divide my gifts from thee with every brother that I see,

who has the need of help from me.

Because I have been sheltered, fed by thy good care.

I can not see another's lack and I not share.

My glowing fire, my loaf of bread, my roof's safe shelter overhead,

That he too may be comforted.

Because I have been blessed by thy great love, dear Lord.

I'll share thy love again according to thy word.

I shall give love to those in need, I'll show that love by word and deed

Thus shall my thanks be thanks indeed."

I bowed my head as the closing prayer was offered and promised my Father in Heaven

that I would never pass up an opportunity to serve someone in need

if I had the means to help them.

I am so unequal to the blessings that are continually poured out upon me and my little family.

Many from Him, and many by those of you who serve Him faithfully.

If I spent the rest of my days in constant service,

I could never repay you for all of the kindnesses extended to us.

Let alone my debt to Him.

.

We arrived back in Bronson's room feeling nourished and strong.

we spent a couple of quiet hours listening to Primary Songs and reading.

He passed another SBT but then we found him struggling.

As soon as it was over, he began to seem tachypneic ( pronounced tah-kip-nic).

That's a big fancy way to say he was breathing really fast and hard,

with a heart rate to match.

He seemed to be pulling in so hard for air. Like breathing through a straw.

Retractions heavy. Head bobbing. Looking exhausted.

They bagged and suctioned him.

I hate that.

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A little after 4, I noticed his tummy looked a little too rounded.

It was unmistakably distended.

I pointed it out to Molly, the Nurse, today.

She agreed.

She called in Cory, the Nurse Practitioner,

and together they decided another NG (Nasal Gastric) Tube was the best course of action.

Using a large syringe, she pulled out over 180 cc of trapped air

and about 50 more cc of stomach fluid. Poor kid.

Once out, it seemed to relieve the pressure and his tummy softened and looked normal again.

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A little after 6, he had his 8th poopy diaper of the day.

As I changed it and weighed it for the nurse, I noticed that his poor bum is looking quite red.

Not just a normal red, but bumpy and fierce.

I knew right away it was yeast from the antibiotics.

Molly called Cory again, and they both concurred.

They wrote up an order for Nyastatin ointment.

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Around 8, they started him on his final SBT for the day.

He was resting so soundly, I wondered if it was really worth bothering him.

The RT assured me that it was worth the exercise

if we want to strengthen his little lungs enough to have a chance at extubation tomorrow.

Alright, already...

He sailed through it.

Yay!

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The only other thing worth mentioning is that he found his own new little groove today.

He has figured out how to wiggle worm his way down into the crib

so that he is laying at a diagonal,

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with his right arm up above his head

often grabbing the siderail pole

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and his left foot pressing up against or hanging out of the other side.

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And usually tapping.

He is insistent about maintaining this position!

(Funny because he does that at home!)

Molly, Matt and I all tried for several hours

to straighten him into a more comfortable looking position,

propped up and laying straight, but he was NOT havin' it!

It only took him about 30 seconds to rerrange himself

RIGHT back to the way he wants to be, each time.

We finally gave up trying!

Hey, if that's how he's comfy... Whatev!

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He has also started doing this crazy yoga maneuver, something like a complete backbend.

He doesn't seem to be particularly agitated or bothered when he does it,

just every so often, but dang!

.

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He wants outta this bed!

He's a strong little sucker!

Close to my heart...

A few days ago, my dear friend, Jane, sent me a text from her anniversary trip to Maui.

"Our flight comes in tomorrow morning," she explained.

"We'd like to stop by the hospital and see you on the way home from the airport."

"We'll be here," I said.

"I'm not going home until I can take him with me."

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The visit was a wonderful distraction from the mundane day.

They are wonderful friends.

She brought a gift, of course... She's Jane.

She's always great at giving gifts.

They are always perfect.

This one was no less.

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She took my shoulders and looked me in the eye.

"I know you said you are not leaving the hospital without him," she said.

"But at some point you are going to have to...

You still have 3 other babies at home who need you."

"I got this so that whenever you are ready, whenever you have to go,

you can take him with you and keep him close to your heart."

.

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{Sigh...}

Jane.

Like I said, it's perfect.

I love, love, LOVE it.

I love, love, LOVE that girl.

I have not taken it off...

Baby Steps...

It was kind of a slow, quiet day for our little man...
The big thing to report today is the continuation of his arm movements.
Up and all around and even above his head.

Yay!

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He was awake for much of the day, but still had that blank empty stare that we hate.
{Sigh...}

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They did remove his femoral central IV line.
There's our one line out for the day.

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Five poopy diapers. Count them... 5!
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He also had a couple of Spontaneous Breathing Trials.

(That is where they turn the ventilator onto standby mode and allow him to breathe for himself to see how he'll do when they attempt extubation again.)

He was a little agitated when they turned the pressure support down from 12 to 8,

so they tried again and he was able to hold steady at 10.

They'll try another in the morning.

One step at a time... right?

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We got to hold him again.

Amazing.

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We had lots of wonderful visitors and have some incredible stories to share.

Truly incredible...

.

But I'll have to beg your apologies...

We are all tired tonight, so I'll have to keep you waiting.

Because, after all, that is what we are doing.

Just waiting...

A week ago... right now...

A week ago right now, I lived in a beautiful, beloved home

that I can hardly remember right now,

as I sit here in this giant, cold building I can not leave.

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My biggest concerns were how I would gently remind Matt, without nagging,

that the undecorated Christmas tree still needed to be carried down to the storage room.

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It was driving me crazy that it was already the end of January

and my Valentine's Day decorations were still not up.

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I was far too frustrated by the final five pounds I've been battling so hard against.

The ones that simply refused to melt off my hips.

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I was trying to figure out how to squeeze in a pedicure that afternoon

and still get the laundry caught up.

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Worried about getting the invitations out for our Super Bowl Party.

(Who is playing again?)

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And anxious to getting started right away on my next book.

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Who was that girl?

I want to go back in time and warn her that her charmed life is about to be turned upside down.

That someone is about to pull out the rug...

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Right now, there was bath water running into the tub.

Right now, I was walking down the hall for the pajamas.

Right now, I was thinking that I could quickly put away the laundry.

Right then, I had forgotten what was most important...

.

I want to shout to her, "No! Don't leave them!"

"Hurry back! They need you!"

"Stop! That will wait!"

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How I wish I could turn back the clock.

Life can turn on a dime...

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Right now, my biggest concern is if my baby can get enough oxygen to keep himself alive

as they try to wean him off the vent.

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It is driving me crazy that it is the end of the week and we still don't have any idea what his long-term prognosis might be.

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I zipped up my skinny jeans today and it wasn't nearly as exciting as I'd imagined it would be.

The motherload of poop we found in Bronson's diaper yesterday was 10x more thrilling.

Maybe 100x!

Funny how perspective can change...

Waxing and waning...

Right now, this minute, Bronson is moving his right arm... again.
The one he only twitched just a little bit yesterday.
The one they said might be partially paralyzed due to neurological damage.
The one that was unresponsive during the Neuro-Assessment just earlier this morning.
They say these types of brain injuries can evolve.

That there will be "waxing and waning".

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...Glad to be back to the waxing!

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So as I gave him a little sponge bath and styled his funky little faux hawk,
he batted my hand away. Cognitively. Several times.
Just like he does at home when he's bugged with my ceaseless primping and polishing.
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I ran out and grabbed the Nurse Practitioner, Kristen.
Dr. Bennett ran in as well.
It was smiles all around the room.
I hate to say I told you so...
But ...then maybe I don't! ;)

Chasing out fear, choosing faith...

The MRI was encouraging.
{Insert HUGE sigh of relief...}
No visible sign of damage to the brain.
That does not insure that the functionality of all his faculties is intact,
but at least it is not a negative.
At least it is not more BAD news.
Today has been our scariest yet.
And also our most sacred.
What a juxtaposition of emotion...
.
I went to bed at about 4:30 Friday morning.
Baby B was resting quietly.
I kissed him goodnight and said a prayer with him at his bedside.
He opened his eyes and our hearts connected.
Spirit to spirit.
For just a brief moment
Good Night, my sweet boy, I said.
.
I went to my sleep cell a few hallways away.
Thank you, Savannah, for the electric blanket.
I was warm and slept soundly until about 8:15.
I woke and packed up my bag, pulling it back down the hallway,
greeting the familiar faces along the trek.
Another day here at the PICU.
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As I walked into B's room and met the new Day Nurse, Rowdy,
I was immediately alarmed.
In the bed where I'd left my little boy to heal and rest
lay a glassy-eyed guy with a blank, empty stare.
My stomach dropped...
"So how are we this morning?", I asked cautiously.
Rowdy filled me in on the morning's Neuro Exam.
He'd come on shift to meet Bronson for the first time and had been advised of his exciting progress.
But he'd found him a little sluggish.
Wide awake, but not really alert.
Staring blankly without focusing. Looking right through everyone.
Unresponsive to stimuli.
What had changed in those 3 hours and 45 minutes?
.
The Nurse Practitioner was called.
Then the Attending Physician.
Then the Neuro-Trauma Specialist.

We went over and over his chart, again and again.

We asked about all his medications.

What had changed? What had increased? What was new since yesterday?
We hypothesized about the possible changes and his sudden decline.
No one had any answers.

Had we imagined the encouraging progress? Embellished it? Misunderstood it?
No, I had seen my boy.
We had seen our boy. We were sure of it.
Others were sure of it.

We even had him on video from the day before.

Dr. Bennett explained that a neuro-trauma injury can evolve and often plateau.

Was this our plateau?

Was this the boy we would be left with?

We felt defeated.

Like someone had just let the air out of our balloon.

.

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We may have to wait for an MRI until Monday.
How could we wait until Monday?
No, they could squeeze us in.
We waited the long, drugerous hours until 3:00 pm.
.
Our Stake President stopped in to see how we were doing.
He found us worried. Well, terrified. Faltering in our faith. Sick.
Matt gathered himself and they offered Bronson a Priesthood Blessing.

Matt... Oh, my Matt...
He turned his little body and mind back over to the God who had helped us to create him.
Asking for the faith to discover Heavenly Father's will and the strength to follow it.
To align ours with His.
President Francom counseled and advised. Hugged and encouraged.

What a blessed servant of the Lord.

He left us and I plead for your prayers.
They took Bronson down for the MRI.
Matt and I held each other in that empty little hospital room and fell apart in each others' arms. Sobbing and clinging to one another, praying.
Pleading for our son with every ounce of strength we could muster.
Sealing our hearts together.
Like never before.
I can not share the words we spoke with one another.
They are the most precious we have ever shared together.
But as I spoke, I realized that faith can not grow where fear is allowed to dwell.
There is not room in my heart for both.

Fear is the paralyzing agent of the adversary.

A first line of his defense.
And so I made a choice.
I must choose faith. Choose to believe. Despite the odds.

Despite the grim news. Despite the reality before us.
No matter how vulnerable and unguarded I let myself become, I will not, I can not fear.
I swallowed hard. Past the unbearable burn in my throat.

And chose to let go of the fear. Chasing it out with my faith.

Doctors do not know everything. They can only make their best guesses.
And even they admit to seeing miracles every day.
.
I know Heavenly Father lives.
I know He loves Bronson and has a plan for his life.
If it is God's will for him to remain with us, he will.
Simple as that.
And with the whole world praying, what have I to fear?
The Lord is bound to answer the prayers of the righteous when they are asked in faith.
And this is the righteous desire of our hearts...
We plea that He will spare our son. Heal his body. Protect his mind.
So that he may live out the rest of this mortal life as a testimony of God's miraculous power.
I can not consider the other option.
There is no other option.
.
But I am stronger than I thought I was.
I can do hard things.
Our family can do hard things.
We will accept the will of our loving Father in Heaven because it has never lead us astray.
Why would it now?
We will trust. We will be believing.
We will continue loving and being loved.
And we will press on faithfully, because we are faithful.
.
This I know...
Bronson's spirit is untouched. It lies within a broken body I do not know how to fix.
But he is ours. Forever. Come what may.
I am blessed to be his Mommy. Matt to be his Daddy.
.
The name Bronson means "Strong one".
The name Micheal means "One who is like God".
It is no coincidence that we chose these names for him.
What a powerful force he is...
Our strong, sweet, wonderful, beautiful boy.
By small and simple things, great things are brought to pass.
And great things have already come to pass.
People who do not pray, are praying.
People who do not believe, are finding hope.
People are reevaluating their faith and priorities.
I am reevaluating my faith and my priorities.
And THAT is the miracle.
He is uniting people across the globe.
Literally.
Teaching the power of prayer. Individually. And how collectively, it multiplies exponentially.
Allowing us an opportunity to practice our faith. And allow it to grow.
.
I do not know why our family was chosen to pass through this challenge.
But I do know that God is mindful of each and every one of us.
All of the time.
He reaches out with tender arms of mercy.

In tiny specific ways.
Extending his grace until we are filled. Until we are enough.
.

Our Angel Nurse, Sally, helped us to hold him tonight.

To cradle our arms around him, stroke his tender cheeks and watch him sleep.

We sang to him that he is a Child of God.

A bit of Heaven was in our little room

as I felt his warm, limp body pressed against my own.

Count your blessings if you can do that without tubes and wires and machines between you.

.

For anyone keeping score we are two tubes down today.

Bye bye to the peripheral IV line in his ankle.

Good riddance to the arterial line in his bloody little wrist.

We will not miss them.

But we reluctantly welcomed two more necessary peripheral IV lines.

One in his left ankle. The other in his right hand.

We still do not know what is causing the seemingly unexplainable decrease

in his neurological functions today, as opposed to yesterday and the day before...

I have a hunch, but I'm not a doctor.

I'm just the Mommy.

Thank heaven I get to be the Mommy!

More prayers needed...

I know we are not the only family dealing with heartache...

I pray you will not tire of our ceaseless requests for your faith and your prayers.

We are humbled to our very cores...

To the very fiber of our souls.

If there is anyone watching and waiting with us, this afternoon,

we plead, one more time, for your prayers.

Things are not going so well here today...

I have never been so afraid...

Even Matt, my rock, is wobbling a bit

for the first time.

His solid faith being chased out by the fear of the reality

we are dealing with hour to hour, and minute to minute.

The once confident doctors are worried...

We can see it in their kind eyes,

written in the creases of their weathered, experienced faces.

They do this every day.

I could never...

There seems to be no logical reason for his sudden decline.

They've sent him for an MRI.

He'll be gone an endless, torturous hour.

The results back a few after that.

We'll have a better idea this evening.

But for now, if you are able and willing,

please petition to heaven for our family.

Please ask our loving Father,

creator of Heaven and earth, and all things in them

to heal our broken boy.

I watched the beautiful snow fall this morning

and thought how many endless things he has created.

The majesty of the mountains I can see out my windows here.

The vastness of the oceans across the globe.

The tiny, delicate blossoms that will bloom again in Spring.

Certainly He can do all things.

Certainly He can mend this child's mind.

Please pray for Bronson.

Please don't be afraid.

Pray with faith and confidence

for God is bound to answer the prayers of the righteous.

We pray that Bronson will live, as a testimony of Heavenly Father's infinite, boundless power.

We pray He will say yes.

Please let Him say yes...

So I gave my self permission to be human.

.

.

Took a shower...

Shaved my legs...

Matt kindly told me at lunch three days ago that I still had vomit in my eyelashes.

(Leftover from the sputtering during CPR.)

I finally washed the last of it out.

I feel almost like a person again.

Although, not the same one.

Never the same one.

Alone tonight...

Our sweet 3 came to visit their littlest buddy

and {insert happy sigh...} it was nice to squeeze them.

Matt went home tonight.
Needed to be a Daddy.
Bless him.
.
He is so confident that all will be well.
He is so sure.
So faithful.
I am in awe of his strength.
.
I, on the other hand, am a trainwreck.
.

.
All over the place.
The nights are harder than the days.
That is when I find myself falling apart.
People keep saying I am doing so well. I am so strong. I am amazing.
Hog wash to all of you.
.
As evidence, let me share this little diddy for your reading enjoyment...
So the other night
(We'll call it Night 3 because the days and nights all blend together here
and well, to be honest, I'm not even sure exactly what day it is right now.)
I was up late. I was tired.
Scratch that... I was exhausted.
And emotionally drained.
(In hind sight, I realize that NOW.
But at the TIME, I had fooled myself into thinking I was handling things quite well.)
However, I was driven... focused.
It was the night I decided to start posting to our blog.
To spread the word.
To preserve a record.
To process through everything that was happening.
To keep my mind off things.
And well, let's be honest, if you know me, you know I always need a project.
So I cozied up in a corner recliner in B's Room with my Laptop.
And as I hacked my guts out onto the screen, I sobbed.
The poor Night Nurse (always in the Room in the PICU) kept asking if I was okay.
I was fine.
Couldn't he see I was fine?
Duh.
So I ran into some hiccups.
There was an issue when I added the the photos to my post and it messed up the formatting.
Then the autosave failed.
I could not get the text to copy and paste to a new post.
I had to drag and drop it one section at a time.
I was near-finished in the wee hours but nodded off at my Laptop.
Cody, the Night Nurse came to tell me it was 7 am.
Time for parents and visitors to leave the room for an hour during shift change and assessments.
I hate that hour. It is misery to leave his bedside.
I went and got a yogurt from where I'd stashed them in the Nutrition Center fridge.
Then choked down a banana.
I went potty and brushed my teeth.
I washed my face in the sink.
It was only 7:15.
I still had 45 minutes until I could return to Bronson's room.
I snuck in and snagged a blanket.
It is always cold here. I've been an ice cube since we arrived.
I wrapped myself up in a little cocoon and sunk down on the floor
to wait until I could be readmitted to the room.
But I was just so tired! So so so tired!
The next theing I knew, Ian, the Daytime Nurse was crouching above me.
Sleeping on the cold tile floor in the hallway outside Bronson's room.
Telling me I had to wake up.
Telling me to go to bed.
Telling me to look at him and asking could I hear him
as I lay silently, unresponsively staring at the floor.
I looked up into his eyes and the floodgate broke.
"Don't make me leave him! Please don't make me leave him!
That's why we're in this mess in the first place! I just can't ever leave him!"
I sobbed.
Bless his heart.
He literally scooped me up beneath the armpits,
from the puddle of a person I was on the floor,
wrapped me a little tighter in my blanket,
walked with,
well okay, practically carried me
down the hall to the parent sleeping cells,
found Matt
and tucked me into bed.
Yeah... like I said.
Trainwreck.
.
Thinking back now I shake my head at how pathetic it all must have seemed.
But now, with Matt gone, I feel so alone.
And as I watch that tiny boy sleeping,
I feel that familar tightness firing up in my throat
and have to swallow down the tears.
.
And then I remember that I am not alone at all.
There are hundreds of you awake with me, praying.
An army petitioning our loving Father.
Enough to get my little train back on the track and chugging up the hill...
For now.
Many thanks~
A hug to each of you.

Three Steps Forward, Two Steps Back...

They told us this would be a roller coaster.
.

.
They told us it would be touch and go.
They told us it would be hard... and heart wrenching.
We knew there was a likely chance that he could back slide at some point.
.
But with all of you praying, from LITERALLY across the globe,
exponentially increasing our own faith and prayers,
we thought he would be the exception.
Our boy must be the most prayed for baby in the world today.
We are touched to the depths of our souls.
But we're just one of a hundred families with a child in the PICU.
One of dozens of tragic, heartbreaking stories.
We are no different than they are.
.
The morning was off to a good start.
I was cautiously optimistic.
I actually felt peaceful for the first time since the incident.
.
I knew it would be a good day.
.
They got an early start.
We peeled a couple quick layers off Our Little Onion...
.
His fluid level is finally in check and the overall edemitus swelling is down,
so they removed his catheter and bladder probe.
Hallelujah for the bag full of pee!
.
His core temperature seems to be stable,
so they took out the esophageal temperature probe.
.
SO for anyone keeping score, that's two minor tubes down, one major tube to go for the day.
.
He was extubated by a few minutes after 9.
We were so optimistic.
Wonderful Dr. Bennett, who is always cautious, seemed confident.
.
Bronson was alert. Completely off his paralytic and all sedatives.
The extraction was less traumatic than we expected.
We'd been warned it could be awful. Lots of gagging and wheezing.
Scary for parents to watch.
It went smoothly. Slid right out.
These guys here are pros.
How can they NOT be amazing with all of your prayers for them?
.
The first half hour was exciting.
We sat him up and helped to pat his back while he coughed.
Matt and I each held a soft arm restraint from opposite sides of the bed,
to keep his hands away from his face, more importantly his tubes.
.
They first tried a standard oxygen cannula, just the little nose hose with prongs up each nostril.
He was still huffing pretty hard.
We waited patiently, singing Primary songs to him and trying to calm him down.
.
His color began to drain...
Our hearts began to sink...
They knew he needed more supplementation.
.
They changed out the oxygen hose to a High Flow Nasal Cannula.
He was still wheezing.
Working so hard to pull in air.
Panic and worry in his eyes. Looking from Mommy to Daddy and back to the nurses.
Not understanding.
Getting more and more agitated as they suctioned the secretions out of his airways.
.
We tried helplessly to soothe him.
He arched his back and kicked his feet,
struggling to get away from the helpful, but let's be honest, bothersome abuse.
.
Another idea.
A supplemental breathing apparatus called a Bi-Pap.
They program in a certain lung pressure and the machine helps him to maintain it.
They use a face mask with a huge hose that makes him look like a jet plane pilot.
It allows him to breath on his own,
but then calculates the deficit in lung pressure with each breath
and tops off each one with an extra little puff through the mask.
A-Maz-ing. Modern medicine and machinery are miraculous.
But, sadly, little Bronson did not respond quite as we had hoped.
.
They gave him as much time as they dared and chance after chance,
but ultimately, they decided his vitals were too high and he was entering distress.
.
He had to be re-intubated a little after 11:30 this morning.
It was excruciating.
Soooooooo disappointing.
So scary to watch.
So amazing to witness.
I thank God for these physicians.
They have my utmost respect.
They work as a well-oiled machine, not a cog out of place.
I am amazed at the positive energy that each and every one here exudes.
They speak with such kindness, respect and appreciation to one another.
Even amid intense crisis.
They are the calm amid the storm.
I am going to try to emulate that for the rest of my life.
Another life-changing lesson learned.
.
So, I wish I could wrap up today with a nice tidy red bow...
But, frankly, today was discouraging, to say the least.
It felt like three steps forward and two steps back.
Still dancing with his destiny.
.
I went to lunch feeling heavy-hearted.
We were riding this incredible wave of momentum.
Swelling bigger and bigger as all of your prayers come rolling in.
We were beginning to crest the summit.
To feel the wave slowing and come crashing down, felt like such a set back.
.
And then my Matt...
My sweet, sweet Matt pulled a rabbit out of his hat
with his positive spin...
There is no set back.
We are still two tubes ahead of this morning.
And two tubes is two tubes.
Even with out the big one we were hoping for.
We are still moving forward. Onward and upward.
At Heavenly Father's pace. At Bronson's pace.
We just have to be patient enough to ride it out.
.
Yeah. That's my Matt.
My Rock.
I chose well.
I am the luckiest girl in the world.

Ready to extubate...

Another 4 am Spontaneous Breathing Test came and went perfectly

while Matt and I slept a few hallways away.

.

This morning the doctors feel confident that he is strong enough to handle extubation!

Wahoo!

.

Bronson can not WAIT to get that tube out!

Matt can not WAIT to get that tube out!

I can not WAIT to get that tube out!

It is the golden ticket that will land him back into my arms!

.

.

I can not WAIT to hold my sweet, beautiful, strong, amazing boy!.

.

They've just turned down the Precedex...

As soon as he wakes up...

Waking up...

This morning I woke with strong warm arms around me.

Strong warm arms that had wanted to go home and sleep in their own bed,

but stayed because I needed them.

.

It was a nice way to wake up.

For about two seconds.

Snuggled against my sweetheart.

And then I realized we were sharing a twin sized bed.

In a dark little sleeping cell.

Far away from home.

And the wave of remembrance washed over me like a wave.

Tangible. Heavy.

The familiar burn returned to my throat.

That lump came back.

.

Here we are.

This is where we live now.

.

I lay there letting it all soak in again.

Praying for another good day.

Thanking God again for all of the countless ways that this has been made easier.

The amazing things that are taking place.

The faith that is growing and chasing out the fear.

.

I sat up.

Wiped the tears from falling.

Took a breath.

Chose to be ready.

Bring it on!

Another chapter of our miracle.

It will be a good day. An amazing day.

.

I can feel it!