Gift from the Heart~ Joy to Love

Joy to Love 8~ Gift from the Heart...

this was an easy one too.

When we think of heart in our family,

there is one precious soul that shines bright!

ShayleeJoy!!!

This time last year tomorrow,

we received her file to review and fell in love with her at first sight!

This was the first time I had ever heard the term

Tetralogy of Fallot.

For the next couple of days,

we spoke with numerous doctors and prayed like crazy.

In the midst of it all,

God spoke to MY heart about HER heart~

Proverbs 17:22

"A Joyful Heart is good medicine."

I felt Him telling me He created her broken heart

and would heal it with His amazing love!

Just look at her now...

healthy and happy

even with a cath scheduled on February 15~

one day after Heart Day. :)

You may think WE gave her a gift from the heart

BUT

God actually gave her the gift of a 'repaired' heart

and gave us the gift of a forever daughter~

a gift from HIS heart.

A ShayleeJoyful Heart...

that we have all completely and forever fallen in love with!!!

So very thankful she is our precious heart baby gifted to us by God.

SO VERY THANKFUL!!!

AND

how cool is this???

Joy to Love~

(we were given ShayleeJOY to love forever!!!)

Good News!!!

You may remember SJ wore a Holter Monitor

for 24 hours last Thurs and Fri

(following an episode in the car)

and then we mailed it back to Dr. Lindsey for a reading

I waited all week to call hoping they would call me

and decided yesterday I couldn't go through the weekend

without knowing something.

I called Dr. Lindsey's office

and was able to speak with a very sweet nurse.

She told me Dr. Lindsey had indeed evaluated the monitor~

he saw NO more episodes or

NO irregular heart rhythms.

We were told he would discuss it more in detail

when we go for our appt on Thursday.

So for now...

our girl Jing is just fine...

and sweet Georgia got a great report too!!!

God is SO good!!!

A Scary Blessed Day

Jing had a cardiologist appointment today

and we left home around 8:30.

A little over half way,

Jing was really quiet one minute

and crying inconsolably the next~ very out of character for her...

she never cries except

when she wakes up at night looking for me.

I pulled over at the first exit

and got out to try and comfort her~

even got her outside for some fresh air.

I couldn't get her calmed down but knew we had to keep going

so we wouldn't be late for her appt.

We had just gotten back on the interstate

when I looked back and her head was leaning back,

face so pale, and mouth open...

scared me to death!

I yanked the car over to the side of the road

and jumped out to make sure she was breathing

and had a heartbeat~ mine pounding out of my chest.

She was not really responding to me

so I called Scott very scared and had him meet me at the dr.

Thank goodness~ Rosie was with me

and got in the back with her until we got to the dr's office.

She finally woke up and cried pretty much the whole way~

we did finally figure out she needed to potty.

The whole way the only thing I could think to do was pray.

I got behind every single slow car

and stopped by every red light

but I knew God was right there in control.

That's the only way I was able to keep it together.

Long story short~

Cardiologist thinks she needed to potty so bad

and preceded to hold it instead of wetting her pull up

making her short of breath

and thus passing out.

They did do an EKG and Echo~

both showing good reports of her heart.

Because of the episode she experienced on the way,

they gave us a Holter Monitor to wear for 24 hours.

It will record her heart activity

and IF she should have another spell,

I am to push the button so it will record what's going on.

I was also scheduled for a hair appt today

so the big girls helped me with the little ones

and I was able to come with no gray! :)

SO... why scary and blessed?

Scared that she had episode

but blessed Rosie was with me.

Scared that we were on the interstate

but blessed we were headed toward Scott

and he was able to meet us.

Scared that something bad was wrong

but blessed we were on the way to the cardiologist!

Scared that it will happen again

but blessed we have the monitor to record all activity.

Scared to go to sleep tonight

but blessed God loves her way more than me

and already knows the plan.

I pray He takes care of our sweet baby.

Here are some pics from the day...

Jeremiah 29:11 NIV

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

An Excellent Report

One week ago today Jing had open heart for a TOF repair

and we had our follow up appt @ Egleston today.

Scott and I wondered how she would react...

as soon as we got to registration,

she started the whimpering so I tried to divert her attention.

When we arrived upstairs for the echo

(and saw all the white coats)

she began full fledged crying.

I was finally able to quiet her down by singing all our songs~

her favorites being...

Twinkle, Twinkle

The Bear Went Over the Mountain

Eensy Weensy Spider

Jesus Loves Me.

We then moved to x-ray with the sweetest tech

and that went off without a hitch.

Next was our surgeon appt

and we had to wait just a little while.

We were finally called back and again~ the white coats.

I mentioned to them about her 'phobia'

and you know what every one of them did?

TOOK THEM OFF~ even the surgeon.

The nurse practitioners came in

and took out the stitches and pulled off the steri strips.

The incision looks GREAT!

Jing didn't make a peep.

Our cardiologist and surgeon came in to check her

and she didn't make a peep.

Echo and x-ray looked perfect~

except for a watch they have on her pulmonary arteries.

Dr. Kanter actually said,

"Let that girl do whatever she wants except drive a car."

We couldn't have asked for a better report!!!

You can see from the pics below...

Jing was happy when we were back downstairs

and on the way home.

Once home, the girls were off to play...

the piano,

and watch a little tv...

When I tried to take a pic~ this is what Jing copied EK doing.

They finally gave me a little grin.

We also came home to a big surprise

by our outside door...

a cookie bouquet from my sweet friend Ashley!!!

Jing LOVED the packing once again. :)

Can't wait to try one of those cookies with my coffee.

I think coming home today really was a happy day for Jing!

SO THANKFUL!!!

First Cardiologist Appt

For the past 24 hours,

Jing has had some chest pain on the left side.

She would clutch herself and look at me with a hurting face.

You can well imagine all the things I feared

and called Sibley Heart Group to talk with a cardiologist.

Dr. Lindsey called me right back

and spent a long time with me on the phone last night

and again this morning.

Finally he said he thought it would be good

if she came in for a check up.

I couldn't agree more!!!

After an EKG and Echo cardiogram,

he confirmed what he suspected:

reduce meds, maybe a little dehydrated,

and post surgery pain.

I just needed to hear it in person I guess to feel at ease.

There is one other issue we may have to visit

in the coming weeks

so we will be seeing him every week for a while.

SO thankful for Dr. Lindsey!!!

We stopped at Chick-fil-a on the way home

and grabbed lunch~

this is the happy girl eating her chicken nuggets.

One of the other things Dr. L recommended

was keeping the pain meds steady through the weekend.

Not a fun task but when all is said and done,

we are off to play outside...

and the jeep was the first toy they run to!

Needed to stop for a little hydrating break.

Looking forward to a wonderful homecoming weekend~

both high school and our family.

We will all be together

and hopefully get our first family pic made!!!

ALL the chicks will be in the nest tonight!!!!!!!!!!!!!!!

Home!

We finally got word around 11am that we were going home!

I gave Jing a sponge bath while waiting for our release.

Clean and patiently waiting...

Dressed the girls in matching dresses

and they were so happy to be alike once again!

Jing may be a stuffed animal fanatic just like her big sis.

She was given several from special visitors~

thank you all!!!

I wheeled Jing down to the car~

she wasn't thrilled about it at all...

would rather be in my arms.

Can you tell I was happy to be getting out of there?

We stopped on the way home for Happy Meals.

EK and Jing ate their whole meal

and then made themselves hats.

Silly girls!

Once home, Jing seemed a little weak

and had me hold and carry her for a long while.

But once she was down,

she and EK had a ball.

EK even said Jing was her best friend!

That was the sweetest thing ever!!!

Scott made dinner and Jing worked patiently on stickers!

We can't even describe how GOOD it feels to be home!

Thank you all for every

call,

text,

comment,

email,

visit,

and most of all prayers!!!

Phil 1:3

I thank my God every time I remember you.

We are going HOME!!!

This face says it all...

I am better and going HOME!!!

One of the fun games we played yesterday and today

was looking for daddy out the window.

Today when he walked in,

she pointed to the window and said,

"Baba out." :)

He and Ella went right down

to play peekaboo. :)

Now when I say cheese~ she flashes me a smile. :)

SEE YOU AT HOME!!!

Prayers answered!!!

A Really Good Day

Today has been a great day!

I gave Jing a bath and changed her pjs.

We spread a big blanket on the floor,

covered it in toys, and played.

She also did a little standing as well.

This is what she does now when

a doctor or nurse or anyone other than us

comes into the room.

She's hilarious!!!

She wanted to stand on the bench

and look out the window.

Scott went downstairs and outside to look up at us...

Jing laughed out loud when she saw him. :)

At one point there was a knock on our door

and when dad said come in...

look who appeared?

Jing didn't move a muscle and EK just stared.

What fun!!!

We have also taken a couple of walks to the first floor today

to a huge interactive wall featuring the ocean.

Jing and I were sitting on a bench watching

while EK pushed the buttons

when Jing scooted down and wanted to walk over too.

At one point she looked at me with this puzzling look

as if to say she couldn't believe she was walking.

She's still a little weak but doing oh so great.

She has eaten so well today, drank lots, and pooped~

all key for discharge tomorrow!!!

AND they switched her meds to tablet form

so today at lunch, I sandwiched one tablet

between two smarties and she took them~

not even noticing it was there.

They worked like a charm in China

and working in the hospital too!!!

Proverbs 15:13 NIV

A happy heart makes the face cheerful.

She's Back!!!

We had a great night...

went to sleep around 9ish until around 4 off and on.

The lab tech was the first to visit

and then we were off to x-ray.

We returned to the room and I offered Jing

some puffs and gatorade~

then raisins and goldfish.

I also ordered breakfast and she ate a whole plate of eggs.

Waiting on the dr~ nurse practitioner came by

and said labs and x-ray both looked good this morning.

Taking her off the IV and switching all meds to oral.

They did offer her a med tablet today

and I put it in a bite of eggs~ Yay~ gone!

If both x-ray and echo look good in the morning,

we are homeward bound!!!

Hoping and praying for Jing!

She was so happy and interacting with me again.

I picked up my camera and this is the smile she gave me.

Isn't she lovely???

When Scott came in I said~ She's back! :)

And so... our auction blog comes full circle...

her heart is truly JOYFUL now

and SO IS MINE!!!

Proverbs 17:22 NIV

A joyful heart is good medicine.

Medicine

Jing does not like taking medicine at all.

Bad thing about that is...

several of her meds are changing

from IV to oral and she isn't happy.

Our sweet nurse Sue called in

the Child Life Specialist today to see if she could help.

They tried showing Jing how her baby

took the medicine like a big girl.

Jing did NOT fall for that one...

she still fought it with all her sweet might.

Hoping she will take it better from me once we are home.

Any suggestions?

We have tried using a syringe, cup, and spoon,

putting it in a sippy cup with juice,

putting it in applesauce...

what else to try???

She's one smart little cookie. :)

PS... not coming home until at least Wednesday.

First Wagon Ride

Jing has pretty much slept for the last 24 hours~

since they pulled the chest tubes.

I think I dozed off and on until...

we were off to x-ray @ 3:30am this morning.

Jing even took her

first ride in the wagon.

X-ray still not clear so we are not going home today.

Maybe tomorrow.

When we got back, Jing was thirsty so I offered a juice box~

some came back up but some stayed down!!!

Hoping she will drink more today

and maybe even take a bite or two.

Waiting for the dr to come by

and let us know what he thinks.

We LOVE our nurse today~ had her yesterday too!!!

So if we have to stay~

we have the best care ever!!! PTL!

Zephaniah 3:8 NIV

Therefore wait for me," declares the LORD

Visitors

Today was a fun day because the girls

came out for a visit.

Josh came with them too.

I also had a couple of surprise visitors~

Beth, Pam, and Roger all stopped by to check on us.

Beth was the giver of gifts for everyone!

EK LOVED her little doll...

My four 'bigs' looking over Jing's crib...

they could hardly stand that she didn't wake up

the whole time they were here.

Actually once the chest tubes were out,

she pretty much slept the day away...

Wonder what that means for the night???

Whatever it means...

I am more than happy to oblige.

A Little Trip

Two things have to happen for us to be ready for discharge~

X-ray is clear

and good echo cardiogram.

Sue our nurse thought she would load Jing

into a wagon to take her down.

Let me tell you...

she was having no part of riding in a wagon.

Is she just the sweetest?

I ended up scooping her in my arms

and carrying her to radiation.

Dr came by and said she had a little fluid

but nothing to worry about.

Rough Night

11:00 Update!

Chest tubes and heart wires are out, oral meds down,

and she is resting comfortably~ completely worn out.

Dr just came by to say they will do x-ray today

and echo early tomorrow morning...

and IF that all looks good,

we will go home late tomorrow!!!

PTL for He is the Great Physician!!!

I hope this is the only negative thing I will say

and I feel guilty for saying it but...

Step Down is not all it's cracked up to be.

Just keeping it real!!!

Beeping monitors that beep for 10-15 minutes,

lots of meds by mouth and she HATES it,

pain and vomiting,

people in and out turning on the lights,

and no full time nurse.

Now for the positive side~

I am able to be with her ALL the time now

and sleep in the room too.

I am able to help with her care

and know everything going on with her.

I hold her when she's hurting,

am by her side when they take blood,

hold her head when she is vomiting after meds and liquids,

and constantly sing and rock her to sleep.

We had a pretty rough night

but nothing that was unexpected.

She was moved from ICU just 24 hours post surgery

so she is bound to be in pain and sick.

It's a catch 22...

Pain meds make her sick but she needs them

and they are giving her something for nausea.

She's still having trouble urinating...

they have a diaper on her and she will NOT go in it

because she is potty trained~

hard to sit on potty with all the tubes still in.

Doctor made rounds and we have had a shift change.

They all say she is doing well~

chest tubes and heart wires will come out today

and she will have a echo and x-ray as well.

God is good all the time!

1 Samuel 1:27 NIV

I prayed for this child, and the LORD has granted me what I asked of Him.