Today has been a long day but it is good to be home =0)   I almost cried a handful of times.  As we left the hospital I couldn't help but reflect on this past month and all that we have been through.  The emotional are still very fresh and a thought can bring you right back to how you felt at a certain moment. It is so difficult to try to describe in words what we feel and have felt, how life has been and will be.  Sometimes it even feels like a blur and I wonder if it all really happened.  It has been such a different experience, unlike anything we have lived through before.  I am so grateful for the cardiac support group at Rady's.  When you think nobody else will understand what you are going through, or be able to grasp exactly what our life has been like, we have a group of other moms and dads who have lived through the same thing.  There is comfort in knowing others that can truly relate to you.  They have already given me good advice on dealing with the at home monitor...buy a bottle of wine =0)

Michael, Lizzie and Audrey greeted Stephen with huge smiles today.  They are so excited to have him at home.  It is so sweet to see their love for him.  They instantly tried to give him toys to play with and Lizzie even asked if he could walk.  Kids are too cute!

I of course came home and saw a million things that need to get done.  I am going to try to take it slow and give my kids the time they deserve, but man I have some major organization and unpacking to attend to!  This is going to be a very busy week.  My sister is getting married on Friday (so excited I get to go) and the Matron of Honor needs to get herself a dress =0)  This will not be an easy task but my mom Gretchen and I are making an attempt tomorrow.  We also have home care coming twice a week, the first appointment is tomorrow, a doctor appointment on Monday with his pediatrician, and a follow up with surgery Wednesday.  We may even be seeing the cardiologist...who knows.  They are watching him closely and I am just fine with that.

The best part of the day...our family is together again.  

Welcome Home Stephen =0)

We are Home!!!

The first time the little man left the room with us

3 very excited siblings welcoming their brother home!

All 3 kiddos took turns feeding their baby brother

First nap at home =0)

Guess Whats Happening Tomorrow...

After

37 Nights away from home

26 Days in the NICU

17 Days since his first open heart surgery

WE ARE GOING HOME!!!

I can't even begin to tell you how excited, and nervous, we are!!!  As long as nothing changes tonight we will be discharged sometime tomorrow =0)  To be a family of 6 for the first time in our own home will be the best Mother's Day gift EVER!  The people here have been like a family to us and it is bitter sweet to say goodbye.  We have promised to visit and they want to come see Stephen in a few months when he comes back for his next surgery.  The team here is INCREDIBLE!  Rady's NICU will forever hold a special place in our hearts.  Their expertise, dedication, and love for their job is evident and we thank God daily for the care he has received and for the people who gave it =0)
And thank you all for your prayers.  We know they made a difference and we thank you from the bottom of our hearts for lifting our family up.  Please continue to pray for this little guy as he still has away to go on this journey.  And Praise God that tomorrow he gets to see day light for the first time!

Such a sweet blanket...THANKS MICHELLE!!!

“Praise be to you, Lord,

    the God of our father Israel,

    from everlasting to everlasting.

¹¹ 

Yours, Lord, is the greatness and the power 

    and the glory and the majesty and the splendor,

    for everything in heaven and earth is yours. 

Yours, Lord, is the kingdom;

    you are exalted as head over all. 

¹² 

Wealth and honor come from you;

    you are the ruler of all things.

In your hands are strength and power

    to exalt and give strength to all.

¹³ 

Now, our God, we give you thanks,

    and praise your glorious name"

God is so good and we give him all the glory!!!

PS  He is wearing clothes for the first time today!  

I will have to get some pictures of it when he wakes up =0)

Warning...this post is a little random because my thoughts are not collected due to lack of sleep 

and minor exhaustion =0)

Each day we are one step closer to going home.  Today they did Stephen's hearing test and he passed with flying colors.  Tomorrow should be a busy day.  He will have his carseat test at some point.  They literally make him sit in it for the length of our drive home, so one hour, to make sure his oxygen levels can remain in his normal range.  We are also having his monitor that we will be going home with delivered and sometime tomorrow will be trained on how to use it.  In the morning he will be having another chest ex-ray and some labs done, praying they all come back normal, and we will be setting up some future appointments, coordinating home care, etc.  We know the end is near.  If things remain the same we should be home very soon...praise God!!!
In preparation I have begun writing all of my thank you notes for each of his surgeons, doctors, nurses, etc.  So far I have written 31 cards!  This place is full of so many wonderful people who probably don't get thanked enough for what they do.  Joe and I truly appreciate everyone of them =0)
I just have to say Stephen is not your average "cardiac baby".  The doctors almost don't know what to make of him.  Almost all cardiac babies have feeding issues in which Stephen has had none.  Last night they randomly wrote for his milk to be fortified because they assumed he would need the extra calories.  Considering this kids weight gain I questioned it.  He was born at 8lbs, 2 ounces and by April 22nd was only 7lbs 5 ounces.  He was able to eat before his surgery on the 26th and then was food-less until the 29th.  He is now 9lbs 11 ounce!!!  He gained over 2 pounds in 19 days!  That is more than most "mornal" babies.  The doctor was so shocked that he wasn't convinced it was "good weight" and was worried he was just swelling or had too much edema. Turns out he is just a chunker munker and one heck of an eater...his milk will not be getting fortified =0)
Today marks 2 weeks since his surgery.  It is amazing to think how far he has come in such a short amount of time.  God has been so good and so faithful.  We are already seeing him use Stephen's life to bless so many others.  Some stories that have been shard with us bring me to tears.  My prayer is that more people except Christ as a result of his special heart.  Sometimes it takes suffering for us to realize our need for Christ.  This verse is my prayer for Stephen.  I pray that God will bless him and use his life to make his love known.

‎"May God be gracious to us and bless us and make his face shine on us-

so that your ways may be known on earth, 

your salvation among all nations" 

Psalm 67:1-2

Check out the cheeks!!!

Play time in his crib

More PIctures!

This little guy is so loved by so many!  Thank you for your prayers and sweet messages.  We love telling all of the staff about how many people have been praying for this little guy...he sure is a miracle baby!!!  Here are some fun pictures from today =0)

All of Me

Matt Hammitt, the lead singer of the Christian group Sanctus Real, had a son born with a very similar heart defect as Stephen’s.  This video (see link below) is the introduction of his song “All of Me”.  The words bring me to tears every time.  These words describe how we feel so beautifully.  I don’t only cry watching this video, I weep.   Joe and I have chosen to love Stephen recklessly with our whole hearts.  The words "I'm so close to what I can't control" bring me right back to the moment I watched him be wheeled away to the OR.  I love this child so much, more than words can describe, and yet his life is not in my hands...none of ours are.  I am so grateful for the surgeons, doctors and nurses who have cared for Stephen, but I find my peace in knowing that his care does not stop in mans hands alone.  God is the ultimate healer and he has held Stephen in his hands, even before he was born.   God has given us this precious little life to care for and Stephen will know our love, all of it.    

"I won't let sadness steal you from my arms.  I won't let pain keep you from my heart.  

Trade the fear of all that I could lose, for every moment I share with you"     

http://www.godtube.com/watch/?v=FFF1FJNU

All of Me

Afraid to love, something that could break,
Could I move on, if you were torn away?
I'm so close to what I can't control
I can't give you half my heart, and pray it makes you whole

You're gunna have all of me, you're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing every fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start.

I won't let sadness steal you from my arms
I won't let pain keep you from my heart
Trade the fear of all that I could lose, for every moment I share with you
[ Lyrics from: _of_me.html ]
You're gunna have all of me, you're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing any fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start.

Heaven broke into this moment, it's too wonderful to speak
You're worth all of me, you're worth all of me
So let me recklessly love you, even if I bleed
You're worth all of me, you're worth all of me

You're gunna have all of me, you're gunna have all of me,
Cuz you're worth every fallen tear, you're worth facing any fear
You're gunna know all my love, even if it's not enough
Enough to mend our broken hearts, giving you all of me is where I'll start

Here are a few photos from today =0)

"Praise the Lord, my soul; 

    all my inmost being, praise his holy name. 

² 

Praise the Lord, my soul,

    and forget not all his benefits—

³ 

who forgives all your sins 

    and heals all your diseases,

⁴ 

who redeems your life from the pit

    and crowns you with love and compassion, 

⁵ 

who satisfies your desires with good things

    so that your youth is renewed like the eagle’s"

Psalm 103:1-5

AMEN!!!