Wednesday Update.

I woke up relatively relaxed.

Which in and of itself is miraculous

as I'm sure you can imagine.

Just knowing that there were a few improvements

last night. . . albeit small ones. . .

is HUGELY encouraging.

This morning his temperature is down. . .

WITHOUT THAT BLASTED COOLING PAD!!!

It's a complete battle against maternal instincts to see your

TINY BABY

all exposed in an air conditioned hospital room

while simultaneously lying on a refrigerated pad!!

I know it was vital to keep his core temperature down,

but his little extremities were LITERALLY like tiny purple ice cubes.

So grateful to Heavenly Father to have moved past that.

Hoping to stay away for good!

His blood pressure is also looking good this morning!

Last night, his white blood cell count was

down from 109,000 to 20,000!!

(though I haven't been updated today as to the current count)

. . . aaaaaaaaand he's peeing!!!

I never thought I'd be so excited about pee!!

This morning my magical mom said:

"prayer really is the wonder drug."

Boy is she right.

Thank you!!

I love you times a hundred gazillion!

Miracles miracles all around.

Prayin' for pee,

Nat

Miracle Number 1.

I was out in the hall when I got a call from the PICU doc

letting me know that Gavin's blood pressure was

dangerously low.

I quickly hurried in to discuss options.

SIDE NOTE:

when you've got a kid as sick as mine,

and your caller ID reads the number from the PICU,

your heart just about falls out from between your legs.

The Doctors felt it would be a wise decision

to attempt what would basically be considered an

experimental procedure in the treatment of Pertussis.

A plasma exchange.

Basically in a plasma exchange,

all your blood is removed from your body

and replaced with new blood.

There was ZERO guarantee this procedure would

be of ANY benefit to Gavin.

But given the severity of this condition,

the doctors felt that the potential benefit

(albeit completely unknown)

would outweigh the inherent risks associated

with the exchange.

I signed my john doe and we waited for the blood to arrive.

At this point I had a chance to let the Doctors and angels know

just how many people out there were praying for them. . .

and for my son.

It was a solemn moment for me.

When the blood arrived it was lying in bags on the table.

Richie prayed over it and blessed it to be

exactly what Gavin's body needed to stabilize itself

and work toward healing.

I looked at those bags of blood and

just felt so much peace.

I KNEW we had made the right decision.

The exchange took 2 hours.

And yes,

we watched.

It was absolutely amazing to watch them just suck out all that

nasty, poison blood and replace it with the new.

Everyone was a little excited.

NO ONE in the PICU had EVER done anything like this.

It was a first for all of us.

As soon as the exchange began,

his blood pressure began to improve!!

GREAT NEWS!

By the end of the exchange the improvement was significant.

It had gone over without a hitch!!

. . . well except for some trouble with the ventilator tube

which required them to bag Gavin

(basically pump air into his lungs by hand)

for the longest 5 minutes of my life.

Upon completion there was a HUGE bottle

of Gavin's old blood sitting on the table.

The mother bear in me wanted to grab it and

throw it through the window for making my boy so sick.

The hope and prayer from here is that this new blood

will help his body stabilize itself so that he

can work on healing.

As I left I asked the Doctor what we need to have happen next.

At this point our prayers are for

• his blood pressure to stay UP
• his urine output to increase SIGNIFICANTLY (or we're going to be facing another slew of dangerous possibilities)
• his heart to stay strong
• and them to be able to back off a bit from the ventilation.

I'm feeling confident.

Your prayers are giving me strength

and giving my son momentum.

I literally owe you both our lives,

because without him, I don't know how I could ever go on.

We're a VERY VERY long way from out of the woods,

but at this point if you've got any good news at all,

I'LL TAKE IT.

We've been feeling so great after this little blip of good news

that we've spent the evening telling

"yo momma" jokes.

but. . .

I have to say the highlight of the night was:

"Wait! I can't keep up! I have Pertussis!"

. . . at least I laughed at myself.

no one else seemed to think I was very funny.

God is good!!!

I'm absolutely certain that this is the first of

MANY

miracles in store for my son.

Thank you for your faith. . .

again.

and again.

and a million more agains.

go Gavin go!!!!!!!!!!!!!

Living on a Prayer.

Ok boys and girls.

Here's where we are in our fight for our son.

.

• For Gavin to live, it will LITERALLY require a medical miracle.
• We have been informed by doctors that he is BY FAR the most critical patient in the Pediatric Intensive Care Unit.
• They are researching medical reports and looking into performing some experimental procedures (because unfortunatly his condition is SO RARE there have not been studies performed to solidify the validity of what they're HOPING will work for him). In fact, as I write this post, they are trying an expermental plasmatic exchange that we're crossing our fingers will offer some kind of MEDICAL progress (beyond the progress we are praying for as a simple result of the hope and faith we have in God ).
  .

I have COMPLETE faith that God has that ace up his sleeve.
.
I have total faith that my son will leave this hospital
a healthy, vibrant little rascal just like his big brothers.
.
I also feel deeply inspired that one of the requirements for this miracle
is that we as a family are to solicit the faith and prayrs of others to
heal our son.
.
Please continue to pray.
.
I know the audacity of this request but PLEASE spread the word.
. . . in ANY way you can.
.
Blog posts.
Twitter updates.
Group emails.
Texts.
Facebook.
.
Thank you God for the power of social media!!!
.
I love you all so deeply.
My mother heart is touched and absolutely buoyed up by your
faith and compassion.
.
THANK YOU.
from the depth of my being.

Pee.

I just had a nice discussion of faith with a man of science.

.

and I liked it.

and he respected it,

and he respected me.

.

Doc needed to hear the run down from momma bear.

Because if my baby's going to live,

and I KNOW he is

because the spirit has told me so with irrefutable clarity,

I need to know what EXACTLY we're all to be praying for

and investing our faith in.

.

Rather than going in to a discussion of

ph levels,

c02 content,

leaky veins,

edema

and on

and on

and on

and onnnnnnnnnnnnn

.

I'll just tell you that we need healthy veins and a whole lota pee.

Doc says that once he's drainin that little dinger

faster than we can keep up with him,

I'll know my baby's getting better.

.

and folks,

I'm ready to know my baby's getting better.

.

ps. are you allowed to say dinger on a blog?

.

.

Oh, and for the love of pete!

IMMUNIZE YOUR KIDS.

and parents, check into getting the Pertussis Booster.

Tuesday.

Last night was rocky.

.

After dinner, I came in to use the lactation room (aaaagain)

and check in before I went to the hotel to try to grab a few hours.

.

I hate walking down the halls of the PICU.

All the angels (nurses) just look at me with these pathetic eyes,

and those I don't know personally avoid eye contact all together.

.

I got to his room and long story short

he was in a really ruogh spot.

.

I was near delirum already,

desperate for even 5 min of restful sleep.

.

The doc gave his report

and after the initial urge to vomit on his feet subsided,

I decided it was probably a good idea for me to stick around through the night.

.

The doctor concured

(which really says something about his condition because the

Drs and Angels are CONSTANTLY trying to get mothers to leave and get rest).

.

That's when I petitioned your prayers.

That's when I became FULL of hope.

FULL OF HOPE.

full.

of.

hope.

.

thank you for that.

.

I was literally FILLED with

COMPLETE and TOTAL

confirmation that my son was going to survive.

.

The spirit in that room was so thick I could taste it.

It became a part of me unitl I could literally feel it coursing through my veins.

.

I got right up in his face,

in a room full of people who were looking at my baby as if he were dead already,

and his momma told him what's what.

.

"You keep working son.

You do NOT quit.

You are strong enough to do this.

You are brave enough to do this.

I KNOW it's scary. I KNOW it's difficult.

.

But Son, here's the deal.

.

The Savior suffered this pain too so that he could be here for you now.

He is here with you.

And so am I.

And people all over the world are praying for you right this very second.

.

SO YOU CAN DO THIS.

.

You will be healed.

You WILL be made whole.

.

We need you.

We are a family, and we need you just as much as you need us.

Don't be afraid.

I am here."

.

And bam!

He started to improve.

Not immediately, but little by little over the night,

that tiny body fought.

and fought.

and fought.

.

And he had a win.

And at this point, any win is a significant one.

.

I had an epiphany in the middle of all this.

I learned a little about the effect our faith has on others.

When I spoke to my son in front of those angels with so much confidence,

their care for him changed.

Their shoulders squared and they rolled up their sleeves.

The entire feeling in the room changed from one dripping with despair

to one saturated with hope.

.

Things aren't so hot this morning.

We're talking another blood transfusion (or exchange rather).

Another heart echo.

and all kinds of other stuff that I decided I'd tune out at the moment for sanity's sake.

.

Right now we need to pray our souls out that his heart STAYS STRONG.

That's really all he's got going for him right now.

Which is HUGE.

We need that heart to stay strong and effective.

.

Thank you for staying with us through the long haul.

.

and guess what?

.

Richie lands in an hour.

:)

Monday.

"Mortality from Percussis is most common when you've got

elevated white blood cells or pneumonia and Gavin has both."

He spit that at me just completely matter of fact.

. . . and my knees shook and I felt as though MY lungs were going to collapse.

"He has PNEUMONIA?"

Apparently the angels

(which is what I've decided to call all the AMAZING specialists who are saving my son)

had neglected to mention that to me during routine rounds.

I mean, I'd known it was likely, but still,

the news felt a little like being banged in the face with a baseball bat.

twice.

Then there was a bunch of talk about white blood cells.

Sludgy blood.

Elevated heart rates.

Wet lungs.

Irregular heart beats.

Heart Echo.

and somewhere in there we were discussing transfusions

and blood replacement.

I was a little dizzy but shockingly alert and coherent.

I finished the discussion and then when the angels were distracted

with charts and monitors, I slipped quietly into the bathroom.

Then I started to lose it.

I'd had it.

I felt like I had NOTHING left.

I had a good hard cry.

Reminded God what was in my heart,

squared my shoulders

and headed out.

I decided to leave crazy in the bathroom.

Crazy doesn't do you ANY good in the PICU.

I left that bathroom full of peace.

It's shocking when peace and terror coexist.

It's disorienting.

When I returned to the room I spoke with the Hematologist.

Angel number 4 million and 3.

When he introduced himself to me,

he put his arm around my shoulder and gave me a squeeze.

I knew I liked him.

Our discussion was really encouraging.

The heart echo (Echocardiogram) looked good!

First good news in a week.

I swear to you.

Because of that the Hematologist feels

a transfusion would be premature.

Apparently it's not uncommon for white blood cells to go up up UP

and then peak and start to lower.

THAT'S WHAT WE NEED!!!

Lower white cells!!!

Elevated white cell counts make the blood thick and sludgy

which makes it harder for the heart to pump the blood through the body.

So that's the prayer for today.

That cell count needs to go down.

If the cell count has dropped tomorrow

morning then the transfusion will be taken off the table.

For now.

Which is good.

His body doesn't need any other invasive procedures.

He just needs to be able to rest so he can heal.

THANK YOU!

For the outpouring of love.

Thank you for the prayers.

Thank you for the faith and strength and friendship.

I LOVE YOU.

We can do this!

GO GAVIN!!!!!

Update.

As many of you know, our 8 week old Gavin was admitted to Primary Children's Hospital late Tuedsay night (29th of Dec). After a few days of struggling pretty intensily with what we were told was a case of RSV, Gavin was just not responding to treatment or stabilization efforts. Thanks to the courage of one very attentive nurse, Gavin was rushed successfully to the Pediatric Intensive Care Unit about 4 days ago (I really have ZERO concept of time anymore. I truly don't even know what day it is).

Upon arrival at the PICU a gamut of tests were performed and one came back positive. Pertussis.

On top of the RSV.

As luck would have it, it's at the 8 week well baby apointment that the first Pertussis vacine is administered.

Don't even get me started on my newfound commitment to vaccinations. Another day, another post.

At this point we're touch and go. He's got tubes and wires coming from every inch of his tiny body. Fluid drips are causing him to appear more like a marshmellow than a baby. He's so pale he's almost transparent. He's being kept alive by a ventilation device and a million well trained specialists that I truly owe my life and love as deeply as I know how.

How am I? There are prayers coming at Gavin and I (and our family) from every corner of the Earth. I've been showered with love and support from fellow bloggers and twitter friends. Friends (of the physical and virtual variety) have been requesing prayers from their networks (and on and on down the line).

I want you to know that I feel these prayers.

.

I feel them to my core.

.

As I travel back and forth from the lactation room to his little room in the PICU (and then back and forth again and again and again. . .and again). I feel your strength.

.

As I struggle to understand all the medical jargon that's being thrown around like it's all elementary, I feel my mind being enlightened and my understanding hightened.

.

When I'm rolling out of bed in the wee hours of the morning, after what feels like only moments of rest, I feel as though I'm being carried on the wings of angels.

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And every now and then when I do inadvertently succum to my terror and tears, I can feel the arms of so many mothers and fathers, brothers and sisters, angels from on high (one in particular) and friends around the world comforting me and helping me to go on.

.

so yes.

I feel your prayers.

and they are creating miracles for my son and I.

.

God is real. God is good. God is truly holding my hand as I walk through the valley of the shadow of death (literally. . . though I have to admit sheepishly that everytime I hear that line I think of that rap song from the 90's).

.

THANK YOU for your love and support.

Please keep those prayers and happy healing vibes a comin'.

This is Christmas.

We'll be blessing my little Gavin David Bruce Norton tonight. Makes me feel intimately connected to another mother. . . loving her beautiful baby boy . . . on a sacred night long long ago. :)

Hers was born to be a king, and his very life offers each and every heart, no matter the pain and struggle of mortality, reason to rejoice.

Because of Jesus Christ, I will walk with my brother again. Because of Jesus Christ we can weather- WITH JOY - the trials of this mortal life and live with God in peace once again.

So celebrate with me the day of His birth,
for THIS is Christmas.
And to you and yours, Merry Christmas.
May your hearts be filled with, hope, joy and so much love!

xoxo,

Natalie

for the grandparents.

Happy Thanksgiving.

Above photos by me.

above by Richie! Click to enlarge!
and ps. the one on the let just might be my favorite of all time.

Sleepng Like a Baby.

"Sleeping like a baby" as in what?
Squirming and grunting and squeeling all night?

Just wondering.

Love you anyway. :)

Dear Ones,

I'm sorry I'm such a cracker jack blogger lately. Babies and stuff, y'know?

click to enlarge, you've gotta get a look at those plump lips and squishy cheeks. . . oh!

FOR THE RECORD: all of you who said to me "Natalie, after 3 it doesn't matter how many kids you have! 3 is the hardest! bla bla bla" you are all grounded for a week, because that is a tub of poo! 4 is WAY more than 3. End.of.story. Rach, you get a gold star for being the only one to offer any kind of warning.

All joking aside, I am happier than I've ever been in.my.entire.life. Being a mother is such a treasured gift. The joy this little Gavin has brought into our home is so far beyond the realm of description it's unbelievable. Seeing the circle of life come to fruition is breathtaking. It's miraculous. Most of all it's humbling.

So thank you for being patient while I take some time to enjoy these precious days with my family.

Love ya lots!

N

Gavin.