1 Month!

Today our little Stephen Joseph is a month old...and what a crazy month it has been!   I went back through all of my old posts and reflected on this little guys life.  He truly is extraordinary and God has blessed us all immensely =0)
This week has been packed full of appointments.  He has been seen by a nurse or doctor every day since we have been home.  On Wednesday we wen't back to children's hospital and when we pulled up it felt like home.  As we walked to his appointment we saw so many familiar faces...faces that we have missed.  At first I didn't understand why I felt such a deep connection to a hospital, or to people who I hardly knew, but a friend put it best.  We went through a crisis there and these people lived through it with us.  The doctor, nureses, technicians, janitors, etc...they were with us in room 3214.  I know that feeling will fade but I think it also reflects on what an amazing team cared for us at Rady Children's Hospital.  One special lady was Manuela.  Every night she brought me joy.  I always looked forward to her smile and she faithfully asked how Stephen was doing.  The night before we left we gave her a gift.  It was so sweet.  We hugged and she cried.  To most people Manuela cleaned their room.  She emptied the trashcans and mopped the floors.  To us she was more and it such a special moment to people able to thank her for being apart of our life, even for a brief moment.
This has not been an easy road.  Stephen's scars have served as a daily reminder of what we have all been through, but they are also a reminder of God's grace.  God has held us all through this past month.  I am so thankful for a heavenly father who is bigger than us all and can see us through anything.  My heart goes out to all who don't know him.  Joe and I prayed for each little baby in the NICU.  We watched so many be brought to and from surgery and we prayed for each of them and their families.  I truly don't know how one could cope without faith yet so many are without it.  I wanted to share these lyrics to  "Holding You"  by Matt Hammitt

Mother in a waiting room

Wondering if she'll hold him soon

In the darkness searching for some light

People say, "It'll be alright"

People tell you to hold on tight

But what do you have to hold onto tonight?

Where will you find peace when you cry?
In these hard times it's not in what you hold on to
It's in the one who's holding you tonight

It's like staring down a wishing well

The voice inside cries out for help

But you've never felt so helpless in your life

And time becomes the enemy

'Cause you just got to wait and see

While all the world is simply passing by

Where will you find peace when you cry?

In these hard times it's not in what you hold on to

It's in the one who's holding you tonight

You are safe in the arms of the Father
You are safe in the arms of the Father
You are safe in the arms of the Father

You are safe in the arms of the Father
You are safe in the arms of the Father
You are safe in the arms of the Father

Where will you find peace when you cry?

In these hard times it's not in what you hold on to

It's in the one who's holding you tonight

Where will you find peace when you cry?

In these hard times it's not in what you hold on to

It's in the one who's holding you tonight

We found our peace in God.  We have been hugely supported by family and friends and have covered by prayer literally throughout the world.  We started this blog so the people we love could be updated on our life and would know how to pray for our son.  It has become so much more.  To receive notes and cards that this little guy is an inspiration brings tears to this mamas eyes.  God has given us sweet glimpses of how he is using our sons life for his kingdom.  

We never woud have thought we could make it through something like this but God is bigger than our greatest fears and if you put your trust in Him he gives you the grace and strength to make it through.  

Thank you for being a part of this journey =0  

Here are some pictures from the past few days.

His first bath

Such a handsome little guy!

Not the best picture...but he has started to smile =0)

Just wanted to let you know that we are all settling in well.  Joe and I are exhausted...but that is expected.  Stephen is doing so well.  He is continuing to put on weight and is looking cuter than ever!  Tomorrow we have some follow up appointments at Rady's.  I am actually excited to go back...I kinda miss it there.  It will be nice to see some of the people again. =0)

The hardest part about being home is not being able to share this little guy with everyone.  He is so stinking adorable and we would love for everyone to see him, hold him and love on him. etc.  But unfortunately it is not what is best for him.  So instead I am going to have to dress him up and take tons of pictures.!

My 3 boys!

Such a little peanut

Sporting the "Joe-Hawk"

Does it get cuter than this?

Love that face!

Thank you all for your continued pray and support.  This little guy is such a miracle =0)
Please continue to pray for his little heart and that he would be protected from illness...especially mine.   I have been getting sick which is a bummer and don't want to pass it on to this little guy.
Much Love to you all!
The Russells

Happy Mother's Day!!!

Well we survived our first night home!  We basically got no sleep...but that was expected.  Stephen slept well but his monitor went off every 20 minutes.  When the doctor called this morning she said he doesn't need it through the night unless we want it for a peace of mind.      Part of me likes the idea of knowing he is hooked up to something, but the other part knows I need sleep and can't live like that.  So tonight we will attempt to unhook him and see how it goes.  
Today we had his first home care visit.  It seemed pretty silly.  They listened to his heartbeat and weighed him and will then charge my insurance company $500.  He is continuing to do so well.  He is now 9lbs 15 ounces!  That means in under a month he has gained almost 2 pounds form his original birth weight despite 1 1/2 pound weight loss from the whole not being able to eat and having heart surgery thing.  This kid is seriously a champ in that department!  Please continue to pray that this keeps up. I guess eating can still become more tiring on his heart so they will continue to monitor his weight gain to see if he will need to be supplemented. 
It was so perfect that today happened to be Mother's Day. 

This morning I woke up, from the little sleep that I did get, to my kiddos bringing me breakfast in bed.  They made me M&M pancakes, sliced apples and juice.  Last night Michael asked me if I could stay in bed after they all got up so they can make me a surprise.  I love how excited they are about giving and doing something special for people.  They had such joy on their faces when they each carried their item into me.  I hope we can continue to instill the joy of giving in their little hearts.  I feel so very blessed and loved by them =0)

 Becoming a mother opens your heart to love in ways you ever thought possible.  I am so grateful for each day with these little blessings.  

Everyone asks who Stephen looks like...you tell me?

Michael

Elizabeth

Audrey

Stephen

Have a lovely night!

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