Finding Joy in the Journey/ stay #22

Lily was home for a total of 7 days this time!!!

WOO HOO!

We made it a whole WEEK!!!

But as nice as it was to be home it was a bit of a tough week...

Lily was hurting and EXHAUSTED

She would have spurts of energy 

but then collapse in exhaustion and pain.

Shes been sleeping 18-20 hours a day...

Mostly, when she is awake. she has just been laying in my arms or sitting on her chair...

She just doesn't have any energy.

Then she started not tolerating her feeds again.

She would curl up in a ball shaking and screaming.

I called the Dr and we tried desperately to manage it from home...

We took her off formula and tried pedialyte

but it only worked for a few hours

and  then her blood sugar dropped.

So we went to 1/2 strength formula

It worked for a little while but her blood sugar didn't like it

We tried 3/4 strength and it didn't work at all.

Finally Monday morning she wasn't even tolerating 1/2 strength

And her blood sugar was all over the place 

And her heart rate kept jumping up to the 230's...

even while she was fast asleep...

We went to the ER

Where they ruled out all the easy fix things

(its never an easy fix with her)

and then they admitted her.

Her blood sugars have been all over the place since we got here

but they seemed to have finally found an IV mixture that is keeping them stable.

Also, as soon as we  stopped the feeds her pain stopped.

She hasn't had anything fed to her for about 36 hours now

and she is soooo much happier.

She is still exhausted.

But she isn't hurting.

Now the big problem is figuring out what to do.

The Doctors are out of ideas.

All 8 of them flat out said

They had NO IDEA what to do next.

It scares me...

How will we feed my child?

I must admit it is really unnerving when experienced Doctors

look you in the eyes and say

"I don't ever say this but I have no clue what to do."

I honestly lately have been at a loss for words.

I spend much more time staring at the screen grasping for the words

to explain whats going on than I do actually typing.

I just lately don't possess words for how I feel...

I have noticed my posts have become much more technical and factual.

Its just that I don't even know how to express how I feel about any of it.

I am in a constant state of mixed emotions.

I am so so sorrowful at seeing Lily suffer

and so so so extremely happy that she is alive, that she is my child.

I find pure joy in the simplest things.

I still laugh often.

I smile daily.

And almost always the smiles are genuine.

But my stomach is in a constant knot.

I am constantly waiting for the next thing to go wrong.

I miss being able to make plans and feel like I will actually be able to carry them out.

I hate CONSTANTLY canceling.

We live in a constant state of upheaval.

However, 

through the help of The Lord,

it has forced me to live in the present.

Even sitting here in the hospital

watching her sleeping peacefully 

listening to my favorite Pandora station on headphones and 

blogging therapeutically,

I feel Joy.

 Pure Joy.

That can only come through the Lords mercy.

If I focus to much on the future

I am almost frozen with fear,

If I focus on the past

I become a blubbering buffoon.

So I live here and now.

And I search out the little blisses

that God sends my way.

The sweet rhythmic breathing of my baby girl,

the happy beats of my favorite song,

 The comfort I feel wrapping around me as I pray.

The smiles and encouraging words of our favorite PCT's

The simple feeling of breathing deeply,

and the realization that 

I actually have EVERYTHING I ever wanted.

ALL I ever wanted was to have a LOVING husband,

who would stand by me through good and bad,

 to be a mom,

to have love reflected in my child's eyes,

To have a roof over our heads,

To have friends who help and support us during times of trial.

To be Free to worship according to the dictates of my own heart and soul.

I Prayed and prayed and prayed for all of this,

so how can I complain at the bumps in the road that come with it?

I have been TRULY blessed.

And with a greater understanding of sorrow comes an even greater understanding of Happiness.

We cannot know one without the other.

So, even though things are difficult 

I am eternally grateful for the life I have been blessed with.

Everyone has trials.

I am not exempt, nor do I expect to be.

And in this moment

this very moment 

with the light fading light casting colors onto the floor,

with every beat of my heart matching the rise and fall of Lily's chest...

I must admit

I feel JOY.

And it is All because of the tender Mercy of my Lord and Savior Jesus Christ.

 

 

PCH Give-a-thon They LOVE Lily!!

This picture in on three different websites.

Its on 98.7 the peaks page, 

KTAR.com

And KTARs facebook page

Its all because of 

KTARs give-a-thon for Phoenix Children's hospital

This picture is all over as well!

They spoke about Lily on the air.

The spoke about how she named her bear 

"E-E" and that she was so sweet with her bear!

They take more and more pictures every time they see her...

And she is on the video on KTARS page

I cant post it here but here is the link

http://ktar.com/59/1574914/KTARs-GiveAThon-for-Phoenix-Childrens-Hospital-Teddy-Bear-Express

As neat as it is to have Lily receiving so much attention.

Its also a bit heartbreaking.

I am glad that we are able to help raise money for our hospital...

But I just wish we were at home listening,

and thinking 

"I can't imagine what I would do if my kid was ever there"

Just like I used to think before Lily was born...

I  never in my wildest dreams thought 

My child's face would be part of a Children's hospital fundraiser...

But since we are here

We might as well make the most of it!

Plus Lily got an adorable bear that she LOVES

And having an event like this going on sure breaks up the monotony of 

they typical everyday of hospital life!

Plus, It NEVER gets old hearing how cute your kid is! :)

Undesirable Popularity (stay #21)

This is the Third LARGEST Children's hospital in the country.

There are 10 functioning paitent floors PACKED with paitents.

We have been admitted at least once ON 

EVERY SINGLE FLOOR.

Some floors 

(Like GI or Hem/Onc)

we have been on many many times.

Security guards know us

and Never ask to see our badges or wristbands.

They Open the arm to the main parking garage at sight of our car.

They never stop to ask why we are here like they do to  most of the other cars.

They know us.

Lily's name is known throughout the entire hospital.

When we get a new Dr that hasn't had her before,

(which is exceedingly rare now)

They always say they have been hearing all about her for months.

They have heard all about her cuteness, her headbands, her smiles, and how well she speaks,

They all know she has Mito, 

and that she is here A LOT.

Transport techs, cafeteria workers, and housekeeping all know us and we chat

as if we were just friends passing each other in the halls at church.

Nurses, Child Life specialists, and PCT's have become good friends and

are essential to keeping my sanity.

When word gets out that 

"LILY'S BACK!"

We have nurses and PCTs coming from all over to say hi

and to get their 

"Lily fix"

They write "Welcome Back"

On the board in our room

instead of just "welcome".

I dont have to explain what kind of things she likes to play with.

They just bring toys that they KNOW Lily LOVES

without me even asking now...

In just about anywhwere else that I could imagine being with Lily,

I would rather enjoy this kind of "popularity"  

But not here...

it just breaks my heart.

This is NOT what I would have wanted for my child.

Being known so well at a childrens hospital is NEVER good.

Dont get me wrong I am so greatful for the amazing people I have met,

and I am HUMBLED by how many many many people

love and care for my baby

(and for Me and Shaun for that matter)

but its all because she is sick.

She is seriously sick.

No she doesn't look it

(most of the time)

and yes there are kids who are sicker.

But she is seriously sick, nonetheless.

This all brings me to why we are here for our 21st hospital stay.

Gosh, I hate that sentence...

21 hospital admissions for my 19 month old daughter.

It seems unreal...

 

So, she hasn't been the same since the

trauma caused by placing the GJ.

 

She has nightmares.

She has flashbacks.

 I can't take her out in public without her crying the whole time.

Not to the store, not anywhere.

And she has been in pain.

 

Sunday the pain got much worse.

She was curled up in a ball, with her fists clenched,

shaking and crying.

But then she would fall asleep and wake up feeling better.

A few hours would go by and she would get fussy again.

She refused to stand up straight.

Mostly she just wanted to lay in my arms,

and hug her elmo.

 Pretty soon even tylenol wasn't easing her pain,

when she was sleeping her oxigen levels were too low.

I would give her a breathing treatment and they would rise for a couple hours,

but then drop again.

 so we took her to the ER.

 

They assessed her and immediately said they would be admitting her.

Within an hour of turning off her feeds,

she was much calmer.

Within 2 hours she was smiling.

within 3 she was laughing,

within 4 she was standing up straight.

 

If only feeding her WASN'T essential.

I am mad at Mito for making

such a natural and typically pleasurable thing such as eating ,

so hard and unpleasant and painful for my child.

I am more than just mad at Mito.

I am LIVID.

I wish it would just leave my baby alone.

Anyways.

The plan is to let Lilys bowels rest for 24 hours then slowly introduce feeds again.

 

Hopefully it will work...

 

I will update more as things progress...