Yesterday the kids and I did a bunch of baking.  We made all sorts of goodies for the doctors and nurses in the NICU.  It was so much fun spending time in the kitchen with them but even more fun explaining why we were doing this.  After we had talked about it I had Michael and Lizzie make them some cards.  Michael's words were so sweet..."Thank you for helping babies".  

The left is him opening the door and waving "hi"  and the right is the sun setting =0)

Today I had my 6 week check-up at the Perinatal center so Joe, Stephen and I got to visit the NICU and drop off the goods =0)  It was perfect.  We actually got to see all of our favorite day nurses and 2 of the doctors.  They were all so amazed at how great Stephen is looking.  It was nice getting to share how life was going with them and get to bless them with some sugary goodness at the same time.  

 

Stephen is continuing to thrive at home.  On Tuesday he weighed in at 11lbs 4ozs!  Sometimes it is hard to remember how fragile his little life is because he looks so amazing.  Please continue to pray for his heart and that there would be no complications before his next surgery.  He still has such a long road ahead of him and we know your prayers will help carry him through.

THANK YOU!!!  

 

In an ideal world I would be a neat freak.  Call me crazy but I like things to be in there place.  Dirty clothes should be in the hamper not in the hallway and dirty diapers should be in the trashcan not on the living room floor.  With the addition of each child I had to give up a little more of the ideal and adopt more of the practical.  With four kids I am pretty sure all of the ideal is now gone and won't be making an appearance any time soon.  I tried fighting it.  I told my self I can do this one room at a time.  Each day I picked a room to clean and each day my efforts were undone.  I even mopped my floors twice only to find them covered in dirt, play-dough and spilled milk.  I tried fighting it because I love a clean house and I feel accomplished when I have a clean house.  Since I realize a clean house is out of the question I found myself setting new standards.  I now love a house that has been played in and feel accomplished by playing.  So if you stop by there may be dirty diapers on the floor, dishes on the counter and milk stains on the cupboards, but hopefully it is because we were too busy playing to notice =0)
Today Joe and I drove down to Rady's for a cardiology appointment.  We got to meet Dr. Davis, the cardiologist who will be following Stephen, and absolutely love him.  Stephen is still looking great and the shunt sounds good (whatever that means).  We will follow up with him again in June and then in July he will either have a cardiac catheterization or MRI (both require him being sedated and intubated) to get a close look before the second surgery.  We won't have an actual date for the surgery for quite some time but it may fall sometime between late August and early September.  Just the thought of it is no fun...so no more thinking for me =0)
Other good news...the results from his lumbar ultrasound came back normal!  Since it had been a week and we hadn't heard anything I was figuring no news was good news and it was.  Praise God!  The lump on his spine has now resolved itself and any concerns from the birthmark were put to rest.
Stephen is growing and developing as he should.  He is getting so strong and has been picking his head up to look around.  Michael cheers him on as he does it...it is adorable.  He is more alert and awake in the day time so we are finding fun ways to play.  Today Lizzie and Audrey read him some books and colored pictures for him.
Since I cant take Stephen out too much I am trying to find fun things to do at home.  Joe and I have also been talking about how to give back and serve.  We have so many great ideas for the youth group but also a few that I want to do with our kiddos.  Next week we are going to bake some goodies to bring down to the NICU staff.  I think I want to make it an every other week thing where we bake something and bless someone with it.  We also want to make little goodie bags for families at the Ronald McDonald house and maybe even some get well cards for children in the PICU.  I wish I new how to crochet...never quite picked that up, but maybe eventually make some simple fleece blankets.  This won't be an all at once venture, but I am hoping teaching my kids to serve will be a lifelong lesson.
We also wanted to update the prayer requests.  Please Pray for no complications before the next surgery and no illnesses for him or our family.  We pray that God would continue to protect his little life and strengthen his body.  And pray that God would continue to use his story to make a lasting impact on others.  Thank You!
And now some pictures to enjoy =0)

Yesterday was a special day as we were able to bring Stephen to our church.  Riverview has been such a support to our family.  They have been providing meals, taking care of our yard, writing encouraging notes, praying non stop and even set up a medical fund to help with the hospital bills which are now beginning to flow in.   Even though he shouldn't be around large crowds we wanted to briefly give the congregation a little glimpse of this miracle that they were a part of.  The power of prayer is so powerful and it felt so great to get to show him off to some of those who have faithfully been lifting him up to our heavenly Father.  It worked out perfectly.  I snuck up on stage with him as Joe did announcements and then hid out in a locked office during and in between services.  The isolation isn't ideal but necessary.  I wish I could have carried him proudly around the patio and let people shower him with kisses and hugs but that will have to wait.  I also wish I coud have hugged everyone and thanked them personally for their support and encouragement but that day will too come.  This time of sheltering will fly by as life always does and before you know it he will be right behind his daddy pushing the coffee cart =0)
Stephen is continuing to put on weight.  Today when the nurse weighed him he was 10 lbs 10 ounces!!!  Seriously this kid is A-Mazing.  That means in 5 weeks he has gained 2 1/2 pounds form his birth weight...not too shabby!  We are still waiting to hear results form an ultrasound last week.   I am hoping no news is good news =0)  He will see the pediatrician again Wednesday, Cardiologist Thursday and Homecare again on Friday.  He is being well taking care of!

Check out the cheeks...and his smile!

"Rookie of the Year"

Today Joe got a special phone call.  Upon our discharge we gave every nurse a thank you card, and filled some with special gifts, and were able to give each doctor who cared for him a nice bottle of wine.  But we wanted to do something extra special for his surgeon.  He had mentioned the day of Stephen's surgery how he drinks a cup of coffee each morning so we designed a special ceramic mug for him.

It is simple and sweet as says "Heart Hero".  We paired it with some nice coffee and a bottle of wine...we didn't want him to be left out.  Today He called Joe to thank us for the gift.  =0)  How sweet is that?  When Joe shared his words I smiled ear to ear.  He said he has put them all to good use but that he especially loved the mug because he knew a lot of thought had been put into it. He was even using it as he called =0)  It was so neat that he took the time out of his busy schedule to make that call.  I had hoped the gift would show how truly appreciative we are for what he does, not only for Stephen, but for so many other families.  Dr. P is a hero in our books!

Yesterday my little sister got married.  It was such a sweet day.  She looked absolutely stunning and I was so grateful that I was able to stand beside her as she said her vows.  I feared missing that day since we found out about Stephen's condition.  I love weddings and love my sister.  It was truly a blessing we got to be a part of the celebration.
Gretchen's upcoming wedding got me thinking alot about my family.  One of the reasons I wanted to have a large family was because of the relationship I have with my siblings.   The four of us are so close and I love them each dearly.   This journey has all the more showed me how blessed I am to have them in my life.  We truly do share life's joys and sorrows.  The love and concern they had for me this past month is touching.  In my darkest time they cried and hurt too.   I haven't been very talkative lately...shocking I know.  This blog has been a great way to communicate because verbally relaying Stephen's condition or thoughts, feeling, enmotions, etc was impossible.  No part of me wanted to talk on the phone and for awhile I didn't even want to see people.  It was too hard and too painful.  It was muh easier to just live in the moment rather than talk about it or try to explain it.  But they let me go through it the best I knew how.  When I needed space they gave it I when I needed them there they came.  I have never felt more loved by them.
It also amazed me at how well my parents know me.  I makes sense I guess...they have known me my whole life.  =0)  I didn't have to say how I was doing or what I needed...they just knew.  They know my roller coaster of emotions.  My highs are high and my lows are low.  The best part about my family is that they are willing to ride that roller coaster with me.  This past month had it share of highs and lows but my family comforted and prayed us through those lows and rejoiced with us in the highs.
Yesterday was simply beautiful.  We came together again and shared in the marriage of Gretchen and Matt.  And the best part is we gained another brother into our family.  =0)  I look forward to sharing life with them.  I want to be there for their ups, which I hope are many, and their downs, which I pray are few.
Thank you...I love you all so much and am so grateful for the love of family =0)

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

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!!!