ROUND 8
For a true champion
There's no place like home

HOME

Last night we had the pleasure of bringing our princess home.

She is happy to be home but she has no idea how happy we are to have her here!

We praise you God with our whole hearts!
Psalm 138:1

Allie has GREAT oxygenation levels, holding steady at 95%!!!

This is better than we could have hoped for!
For this I will praise you, O Lord
2 Samuel 22:50

Her lungs are getting stronger every day. There is a new load and higher pressures on her lungs. It will take a while for them to adjust and be in good working order. She has medications to help her with this. We are thankful for the advances in medicine that are helping her recover.
Let everything that has breath Praise The Lord!
Psalm 150:6

Her pain is still a bit rocky. We prefer to keep her off narcotics :)
Please pray for a continued response to good old Tylenol.
Heal me, O Lord, and I shall be healed,
Save me, and I shall be saved,
for You are my praise!
Jeremiah 17:14

We are thankful for the skilled hands of her surgeons,

and for the kindness of her medical team.

INOVA Fairfax has been wonderful to our family over the past 4 years!

We are forever in debt to the dedication, skill, and compassion
of her friend and cardiologist, Dr. Patrick Callahan of Child Cardiology Associates.
He has been her guardian angel here on earth. He diagnosed her, watched her grow, held her, listened to her and was the only one who knew the very beat of her heart,
he saved her for us and for that there are no words.

Thank you all for your words of encouragement and support.
Your care and thoughtfulness during our preparations,
the packages, cards, balloons, and projects we have received have
warmed our hearts and helped us feel connected to each of you.

We so appreciate the generous gift cards and

hand prepared meals that have been donated!

The service given to our family has been overwhelming.

Last but certainly not least, The Ronald McDonald House
has been a blessing to our family over these years!

We have the kindest regards for this charity and the provision they are to families.

If you do not know much about it please look into it
(link provided on the right)
and consider donating or volunteering in honor of Alysse.

They help keep families together by providing a place of
respite during these stressful times.

Thank you RMHC!

Please keep Allie on your hearts through recovery.
She is still controlling pain.
She will be receiving physical, occupational and speech therapies
for a while to help in making a full recovery.
But above all please take a moment to
 PRAISE GOD our loving Savior for all he has given,
for all His provision, mercy, love and LIFE!
God is with her always!

https://vimeo.com/49289251 

ROUND 7

Standing on my own two feet!

The champ is making big strides today! 
With all her tubes in tow she's still makin the scene!

 

Allie has decided to go toe to toe with her drainage tubes.

These chest tubes are the only thing tying us to the hospital.

It looks like this throw down will keep us ringside at minimum

through the end of the week.

We are delighted with the progress she has made this week!
We have no doubt that 
through our Savior, Christ Jesus,
ALL things are possible.

Thank you for continuing to keep her lifted in these obstacles:

*Elimination of chest drainage

*A desire to eat and drink

*Protection from infection and further complications

"Mama, It's a Nice Day."

ROUND 6

The champion is gaining strength over her opponent Recovery!

Allie has knocked out low oxygenation!
She gave pain an uppercut!
Put her kidney function in the ropes
and is jabbing at food and drink :)

However, it looks like slow chest tube drainage is gaining on her.
Slowly but surely we know she will overcame this obstacle too!

As soon as her drains clear out we will be working toward closing out this match :)

Allie is doing good. She is finally up and about on her own two feet. She is back to being chatty, painting, coloring, watching movies and blowing bubbles. Today I took her for a wagon ride outside. Allie said to me, "mama, it's a nice day." 
 Yes it is babydoll, yes it is!
                    What a champ!

ROUND 5

Allie has been kissing the canvas these past few days, it seemed the reigning champ was down and out and we thought she might throw in the towel but Allie has come out from her corner, feet dragging a bit, but it looks like this fighter is going the distance! 

Allie is still having large amounts of chest drainage, a bit unusual for 4 days post op. However, the drainage was tested and showed no indication of Chylothorax. This is HUGE blessing. However, the amount of drainage still needs to subside.

She has been off oxygen for 12 hours now and is holding a good pattern of oxygenation levels at 90%! This is a great improvement from the 70% rate she has lived on for 3 years. When this is all over she is going to feel great!

IV fluids have been discontinued :)
The hope is that this will make her thirsty and hungry!
Please keep that desire in prayer for her.

Kidney function is up with the help of some magical drugs.
She functioned on these medications for her first year of life.
We would just prefer minimal medications and natural function in her body
but we a grateful for the medications.

Allie is talking more, we've even seen a smile :)
Sometimes one little boost is all we need to see over the hurdles.

The Hurt & The Healer

ROUND 4
Where is the bell?!?!?
Tough, tough round today!
It is Friday morning 4am and our Thursday is just coming to a close :(
Long day...long,long night.

Our hope is that Allie will feel and know that her Savior loves her and is helping her even through this. We want her to know that The Healer will meet her hurt. 

Why?

The question that is never far away

The healing doesn’t come from the explained

Jesus please don’t let this go in vain

You’re all I have

All that remains

Breathe

Sometimes I feel it’s all that I can do

Pain so deep that I can hardly move

Just keep my eyes completely fixed on You

Lord take hold and pull me through

So here I am

What’s left of me

Where glory meets my suffering

It’s the moment when humanity

Is overcome by majesty

When grace is ushered in for good

And all our scars are understood

When mercy takes its rightful place

And all these questions fade away

When out of the weakness we must bow

And hear You say “It’s over now”

I’m alive

Even though a part of me has died

You take my heart and breathe it back to life

I’ve fallen into your arms open wide

When The hurt and the healer collide

Jesus come and break my fear

Awake my heart and take my tears

Find Your glory even here

When the hurt and the healer collide 

(Mercy Me - The Hurt and The Healer)

We are in praise and awe that our beauty is with us 
and standing strong as His champion!
We thank our Healer and Savior, Jesus Christ
for all the provisions that give us our blessing Allie.

TODAYS PRAYER REQUEST
Allie needs to be thirsty and hungry.
Her kidneys need to wake up!
Her lungs need to clear off fluid and open back up so that her self oxygenation levels will improve.
Her IV failed tonight, she had to get a new one. Her leg has swelling that needs to subside for her 
comfort.
We pray especially for clear chest tube drainage, clear X-ray and No No No to CHYLOTHORAX!

Round 3

Allie has decided to sit in her corner a little longer than is typically allowed.
She is taking her time now. She came out swinging and is now showing signs
of exhaustion.

I believe Allie has been resting in the Hands of her Savior and that is a hard place to leave :)
She simply wants to continue to sleep in the shadow of His wing.

Please take a quiet moment to be with Allie in peaceful prayer and encouragement
through this slide show 
https://vimeo.com/49289251 

PRAYER REQUEST

Please pray today for 

  full kidney function

  thirst and hunger

  submission of nausea

  a rise in self oxygenation

  energy and stamina 

  Isaiah 40:31

  I will run and not grow weary

  I will walk and not grow faint

LADIES AND GENTLEMEN, WELCOME TO THE MAIN EVENT

Yesterday our brawler entered her main event.
She went toe to toe in a bout with her own heart.
Round 1 with surgery was a KO.

Allie is entering Round 2 today and she is facing the giants!
Please keep cheering her on through prayer as she is really on the ropes here.
This recovery is her toughest fight yet.

It was a tough night and she is bobbing and weaving today. But she hasn't buckled!

She is off the respirators and breathing on her own but is struggling with fluid on her lungs, depleted oxygenation, poor kidney function and pain management.

We will be ring side 24 hours. Thank you for your support, it is an encouragement to us all.

PRAISE GOD with all that is within us! He has brought us good news! As always  our loving Savior exceeds all that we ask and she is His perfection!

Surgery began on time this morning at 7 am. The expectation was that she would be done and to the PICU by 2pm. It is now 12:30pm, she is in the PICU and we will see and be with her again within minutes :)  Allie's surgical nurse said the procedure went excellent. Her surgeon spoke with us and let us know that the surgery was textbook, the goretex graft fit well and her oxygen levels (that were at 70%) are hovering at 95%. It looks like we have a pink princess again :)

While she has overcome this first part please keep her lifted. She has a long road of recovery. And this will be the hardest part for our little princess. She will need to wake up, extubate and breathe on her own, hopefully today. Please keep her lifted for His strength and comfort.

James 4:8

Draw near unto God and He shall draw near unto you

Thank you, thank you all for keeping her name on His altar and in His sight throughout this surgical procedure.

More updates to come...

A Perfect Broken Heart

Having been born with half a heart the world claimed her broken.

We questioned God on this. Why would He create her broken? Why would He create affliction?

And then we watch her grow, we see her bless those around her,
we listen to laugh, we hold her as she cries, we are witness to her compassion,
her strength and when we look into her eyes we see Him.
Gods creation, His works, His plan and we know that she is not broken, she is perfect.

God gave her the perfect heart to live in this broken world.

He created her perfect to His will. Half a heart is not her affliction. It is her calling.
And from her calling He is teaching us of what true brokenness is.
Broken:
To change direction abruptly
From the moment of her diagnosis we were the broken ones.
Every focus of our life turned a 180 and here we are on this journey of broken hearts learning everyday that all things are
"not by might, not by power, but by My Spirit says the Lord." Zechariah 4:6

Today is another day of brokenness. We are broken to His will for her as she will be broken through surgery. They will quite literally be breaking her perfect heart to live in this broken world.

Alysse will be undergoing her 5th heart surgery today. While this is not her first rodeo, we sure hope it will be the last for many years! The Fontan procedure will reroute how the blood flow from the lower half of her body returns to her heart and lungs. This surgery and recovery will be her most challenging yet.

Please join us in prayer today as we trustingly place Allie's name on His altar, that she will be lifted in His sight, that He will carry her through this in His merciful and loving hands. We pray comfort, peace and rest upon her today.

Psalm 57
Be merciful to me, O God, be merciful to me!
For my soul trusts in You;
And in the shadow of Your wings I will make my refuge,
Until these calamities have passed by.

 I will cry out to God Most High,
To God who performs all things for me.
He shall send from heaven and save me;
.....

 Be exalted, O God, above the heavens;
Let Your glory be above all the earth.

 ^.....

My heart is steadfast, O God, my heart is steadfast;
I will sing and give praise.
Awake, my glory!
Awake, lute and harp!
I will awaken the dawn.

 I will praise You, O Lord, among the peoples;
I will sing to You among the nations.
 For Your mercy reaches unto the heavens,
And Your truth unto the clouds.

Be exalted, O God, above the heavens;
Let Your glory be above all the earth.

MVP

TEAM ALLIE'S star player entered the pre-op court today with high spirits!

She dribbled past the paperwork...

Ran a pick and roll past the EKG...

The champ went on to hit a jump and hook over the blood work...

and then she drove it on down the lane for  a WHAM BAM X-RAY SLAM!

Allie did great today :)

Surgery is tomorrow 7am. 

But for tonight we will enjoy this little victory with our MVP!

Today is pre-op day!

Allie will be seeing her cardiologist, surgeons and medical team for prep evaluations and testing today. Blood work, x-rays, EKG, echo cardiograms. It would be a long day for most 3 year olds but our princess is a champ! She will breeze through it...with the help of Mickey Mouse Clubhouse :)


WALKING IN THE SHADOW

We have prayed, prepared and planned for months. We have done all we can. And now we surrender it all to our Lord and ask for His mercy, comfort and love as we walk through this in the shadow of His wing. Today we will look up from all we have done to praise God for all He has given.

God has provided a medical team that are not only highly skilled but are kind and compassionate. These providers have watched Allie grow since before birth. They have saved her life through these surgeries and through the unknowns of shunt failure, wound infections and heart failure.  We have not a doubt that God has placed Allie in the hands He has trained for her.

We have been blessed by a community of support that God has placed in our lives. Friends, family and many strangers have sent words of encouragement, prayer and support. We have been receiving care packages, gift cards and donations. We cannot tell you how much every gesture blesses us. We know that during these times we are often distracted but please know that each of you are appreciated and a blessing to us!

And above all we thank our gracious God for His merciful love. He has blessed us with 3 most wonderful years this far with His angel. She is a joy and our delight! We thank Him for trusting us with His princess and for allowing us the opportunity to love her, support her, encourage her and nurture her through the challenges she faces. It is our honor and our pleasure.

Psalm 138

I will praise You with my whole heart;
Before the gods I will sing praises to You.
I will worship toward Your holy temple,
And praise Your name
For Your lovingkindness and Your truth;
For You have magnified Your word above all Your name.
In the day when I cried out, You answered me,
And made me bold with strength in my soul.

 All the kings of the earth shall praise You, O Lord,
When they hear the words of Your mouth.
Yes, they shall sing of the ways of the Lord,
For great is the glory of the Lord.
...

Though I walk in the midst of trouble, You will revive me;
You will stretch out Your hand
Against the wrath of my enemies,
And Your right hand will save me.
The Lord will perfect that which concerns me;
Your mercy, O Lord, endures forever;
Do not forsake the works of Your hands.