This post is long overdue...it has been a long week.  Stephen is back to himself during the days but the nights have been a whole different story.  His new pattern had been waking up every hour screaming.  It has been exhausting to say the least.  If it was any other child I am sure we would be frustrated with them but we pretty much just feel bad for him.  He had his post-op appointment with the surgery office on Monday and they said this behavior is normal and will eventually go away...lets hope so!  Other than getting no sleep he is doing so good.  He is smiling, cooing, blowing bubbles out his mouth and sticking his tongue out to rub it over his 2 new teeth...my personal favorite to watch =0)  He is a little more clingy, and prefers to be in my arms, but I figure he deserves the extra attention for all he has been through.  Our church has been blessing us with meals which has been amazing.  I don't think Stephen would let me put him down to prepare anything nor would I have the energy to cook.
After his post-op appointment they gave us the green light to start baths back up and let the steri strips come off.   I forgot how the fresh incisions look.  I was a little worried at the red ring around one of his chest tube areas and took him to the pediatricians office to double check that everything was normal.  Last time we were in the hospital for this part and I remember thinking the same thing, and the nurses assured me then too it was normal, but I went with the "better safe than sorry" motto.  It was a little irritated, but not infected, so they prescribed an antibiotic ointment which I have yet to use.  The next morning it looked much better so I think it is safe for now.
He has a follow-up with cardiology on September 10th and after that I have no clue how closely or not closely they follow him.  I get the feeling it may only be a few times a year until his next surgery if all goes well and he has no major illnesses.
As for prayers...
Please pray that he continues to heal well.  He has another month before the chest bone is fully healed.
That the incision sites do not get infected.
For sleep...we can all use it!
For his overall health.  We will be entering cold and flu season and we just pray that he will remain healthy and not have to fight off nasty bugs.
For his heart.  We are often reminded of how truly blessed we are that he is as strong as he is and we pray that God would continue to strengthen his heart as it works extra hard to support his body.
I hope to have some pictures up in a few days...but first I need some sleep =0)
Much Love
Kim

It is good to be home =0)  I am so thankful for how well things went.  It is not something we take for granted.  A little boy in the room next to us had the same surgery in the beginning of July and suffered a stroke from a blood clot to the brain.  While I know we would have to be okay with any outcome, we are so grateful that Stephen is as healthy as he is and that he has done so well during both surgeries.  God has protected him and we know he was surrounded by so many prayers...thank you.
We are still in an adjustment period around here.  It is strange coming home so quickly after such a major surgery.  Last time we were in the hospital for 17 days post op so he did a lot of the major healing under there care.  This time is much different.  He still has his steri-strips on the incision sites and cannot be bathed for another week.  He is still sore, or at least we think he is.  He gives out these sad little cries every now and then.  The chest bone and muscles will take about 6 weeks to fully heal so we have to be extra careful when picking him up and holding him.  He is also requiring quite a bit more attention, which he rightfully deserves and got his first 2 teeth in the midst of this.  But he is a fighter our little Stephen.  He has been through more in his 4 months of life than I have in 30 years.  And through all of this he has kept his charm and sweet disposition =0)
It is also a little strange coming back from such an emotional week and having to return to the every day tasks of life.  Our oldest starts kindergarten next week and tomorrow I have to take him for registration and school pictures.  Part of me feels like a need to a little more time to debrief.  I have almost been having one of those "wait a minute...did that just happen?" moments.  It is crazy how life just continues even if you are not ready for it to =0)
We will go back on Monday for a follow up appointment with the surgery team.  Please continue to pray for Stephen's healing and that no infection would develop around the incision sites.
This has been a crazy journey and we are so grateful for everyone who saw us through it.  Your prayers have no doubt played a role in our lives and we are so thankful for them.   Sometimes it was just the simple things that came at just the right times.  Your responses on the blog, facebook, emails and texts lifted our spirits.  The morning of this surgery I received a text from a friend I hadn't seen in a few years.  I can't tell you how perfect it was.  A simple text at that moment was just what I needed and it came at just the right time.   Joe and I were pacing the waiting area waiting for him to be taken back.   I was trying my best to keep my mind off of what was about to happen and when I looked down at my phone and read her sweet words I just smiled.  I was happy to hear from her, happy to know she was praying for us and happy to know that God had just given me exactly what I needed through her text...thanks Sarah =0)  A pie date a mini reunion is much needed (Sarah, Heidi, Erin, Julie and Lisa)
You see God has been so faithful to us.  He has given us strength when we were weak, encouragement when we were down and peace when we were fearful.  He has heard your prayers and used your words to lift us up.  Thank you.  Truly...thank you.  We know this journey is not over but we know God will be with each of us every step of the way.

"For this God is our God for ever and ever; he will be our guide even to the end"

Psalm 48:14

He loves to snuggle his "moo moo"
A little cow his siblings bought him when he was born

Waking up from a nap...that smile hardly leaves his face =0)

His joy amazes me...he is just as smiley as before =0)

Going Home!!!

Stephen was just unhooked form the monitors and we are awaiting discharge instruction...we are going home soon!!!!  Oh happy day =0)  Thank you all for your prayers...we know how much they help.  Hope to have some more pictures up tonight.

God answered our prayers!!!  Stephen has been eating through the night!!!  They just drew some labs and wheeled him off for a chest ex-ray, but I would assume we will be going home today!  Praise God!  JOe was even able to sleep in the room with us last night and we got some rest...who would have thought =0)  It was such a great night and I am just so thankful for your prayers and God's provision...hopefully we will have some "going home" pics later!!!!

Well we are here for at least one more night.  Stephen seemed to have completely lost his appetite which is unusual for this little chunker.  They want to continue watching him through the night to see if he does any better.  Please pray that he begins to eat and that there isn't some other underlying reason other than the surgery recovery causing it.  The doctors don't seem to be concerned but it is a little disheartening to not be able to get him to eat anything.
On a brighter side his siblings came to visit him today.

We look forward to being home soon!  Please continue to pray for no infections and sleep also!
Much Love
The Russells

Please pray that Stephen will eat.  The plan was to go home today, but we don't know why he has completely lost his appetite, so plans may change =0/   He is still a happy little guy...but we want him home.   I am hoping it is just the two teeth poking through but who knows.

Last night went as I expected...no sleep for me.  Hopefully I will get a nap in today.  Collectively I may have slept for an hour or two.

Thanks for your prayers!!!

Stephen is doing AWESOME!!!  Each day we have noticed him becoming more and more like himself and this morning was the best yet.  He has been smiling at us and even starting to babble a little more.  They just removed the pace maker wires and will be taking out the last central line in a few minutes.  Today they will be adjusting some of his medications and making sure he eats but it shouldn't be long before we will get to go home!
He has basically decided he wants nothing to do with a bottle so I will be spending the night in his room from now on.  I am expecting no sleep since we are in a shared room but at least the little guy won't be hungry =0)
All of that drool he has had for the past few weeks finally paid off...his first tooth started to poke through.  All of our kids were early teethers so he is just keeping up with his siblings =0)
Please continue to pray that no infection sets in.  After his last surgery he spiked a fever after they pulled a central line, so lets just pray that doesn't happen this time so we don't end up here on antibiotics again.

We are continually amazed at his recovery and God's protection over him.  Our hearts are full of gratitude and our lips full of praise.

"Give praise to the LORD, proclaim his name; make known among the nations what he has done.  

Sing to him, sing praise to him; tell of all his wonderful acts.  

Glory in his holy name; let the hearts of those who seek the LORD rejoice.  

Look to the LORD and his strength; seek his face always"

1 Chronicles 16:8-11

Stephen has never been a fan of the nasal canula.  Back in the NICU he was infamous for taking it off...and well nothing has changed.  Yesterday they put his arms in splints to keep him from pulling it out, but today he broke free and was found doing this...

Notice it on to of the nose...not in the nose =0)

He would literally take it out immediately after we put it back in.  Finally the nurse decided to try him off oxygen and he has been canula free ever since!

Much better!!!

And the best part of the day...

Having my baby back in my arms!!!

This is one happy mamma =0)

We have now been moved out of the ICU and into a step down unit.  Unfortunately we are in a shared room, but we are so grateful for his progress that we will try to ignore that fact and focus on the positives.  He is doing AMAZING!!!  

Thank you your constant prayers and encouraging messages.  We are so appreciative of the support.

1 Thessalonians 5:16-18 

Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus.

He is smiling again!!!!  What a great face to be greeted with this morning!

Stephen is doing awesome!  When we came in this morning he was awake and gave us a few smiles...it was the best!  They just removed his last chest tube and it looks like he will get moved out of the Intensive Care Unit some time today.  Thank you for our continued prayers!  He is resting right now but hopefully when he wakes up we will get to hold him...I can't wait!!!!
Much Love
Kim

After trying a variety of things Stephen's blood pressure is back in the normal range (around 90/50).  When he was hypertensive he was getting up to 140/70 and sometimes even sightly higher.  He has also opened his eyes a few times for 5-10 minutes.  The first 2 times he was agitated and then fell back asleep.  A few minutes ago he just contently looked at Joe and I and then drifted back off to sleep.  I am still looking forward to seeing a smile from him soon!
This afternoon they removed 1 of his chest tubes, changed the dressing on his incision site and began bottle feeding him.  If all goes well they will remove the second chest tube and his arterial line tomorrow leaving him with only a central line, peripheral line, pace maker wires and the canula left...so hopefully we will get to hold him!!!
This road has not been an easy one but we daily see the provisions of the Lord and are so humbled by his love for us.

"When I consider your heaves, the work of your fingers, the mon and the stars, which you have set in place, what is mankind that you are mindful of them, human beings that you care for them? You have made them a little lower than the angels and crowned them with glory and honor" Psalm 8:3-5

God's love for mankind amazes me.  =0) 

"I will give thanks to you , LORD, with all my heart;  I will tell of all your wonderful deeds.  I will rejoice in you;  I will sing the praises of your name, O Most High"  Psalm 9:1-3

Please continue to pray for his recovery.  We pray that his pain and blood pressure will remain under control and that he will steer clear of any infections.

Thank You!!!!

Stephen is hypertensive right now so please pray for his blood pressure to go down to a normal range today.  They have been giving him different medications to try to relieve the pain and pressure but as of now his numbers are still remaining high.  I don't think it is a cause for concern yet, he did get out of surgery only 17 hours ago, but it is something they will be watching.  He hasn't opened his eyes much but we have seen him wiggle around.  He is still a cutie =0)

We just got back from seeing him and are about to go to bed.  The breathing tube is out, which is great, but the little guy is in alot of pain.  It was so hard to see him like that.  He was clearly agitated and "crying" (he has no voice right now).  Tonight will mainly be focusing on pain management as his body tries to adjust.  Please pray that he will get some rest and some good meds =0)
Good Night =0)

I just want to first Praise God for Stephen and the amazing little guy he is!  We are so blessed to have him in our lives and I was elated to hear that the surgery went well.
Sorry it took so long to get back to a computer but that is just how it goes =0)  Stephen is doing great.  I was actually surprised at how well he looked after the surgery...it was a lot less scary looking this time around.  Right now they are working on extubating him.  They have him doing most or all the breathes but will keep the ventilator in for another 30 minutes, draw a blood as, and if everything looks good they will be removing the tube in a little while.  He is finally starting to wiggle around and move which can actually be hard to look at.  His little body just convulses as he tries to gain control of muscles again.  But he seemed to respond to our voices and tried opening his eyes and even gripped my finger.  God is soooo good!    Please continue to pray for his healing.  As he wakes up he will begin to feel more and more pressure in his head which will be quite painful.  It will take his body a few days to adjust to its new circulation but hopefully the headaches will resolve themselves before we go home.  Please also pray for no infections and that he would just sail through recovery.  I just love this little guy so much and can't wait to have him back in my arms!!!

The Lord is my strength and my shield;

    my heart trusts in him, and he helps me.

My heart leaps for joy, 

    and with my song I praise him

Psalm 28:7

Just heard he is out of surgery...on our way to wait for the surgeon.  He will be in the PICU in about an hour.  Don't know anymore than that but PRAISE GOD!!!!!!!!

Stephen was taken back around noon so we don't expect to hear anything until 5 or 6 tonight.  I have been doing surprisingly well today and give all the credit where it is do.  God is so good and so faithful.  This morning I started to cry at the thought of this surgery but something clicked and I was abe to hold some of my thoughts captive.  You see I tend to be over dramatic...just a little, and can allow my mind to take me places that it honestly just doesn't need to go.  I like to think of my self as an optimistic pessimist...I prepare for the worst but hope and pray for the best, but today I decided to try something different.  I am going to trust that all will be ok, irregardless of the outcome.  The words from Job came to my mind "Naked I came from my mother's womb, and naked I will depart.  The LORD gave and the LORD has taken away, may the name of the LORD be praised"
Today I am doing my best to trust in God and all I know to be true.  I am not going to think of the worst and what could go wrong...it would break me.  "Now faith is confidence in what we hope for and assurance about what we do not see"  I have been and will continue to prayerfully go through today knowing that God is the creator and ruler of all things and that he is holding our precious Stephen in His mighty hands.  God if the giver of life and the ultimate healer and in Him I will put my faith.
I know God is with him and is with us and somehow he is working all these things out for His glory.  
Please continue to pray.  We will give a quick update when we here from then

"O most loving Father, who willest us to give thanks for all things, to dread nothing, but the loss of thee, and to cast all our care on thee, who carest for us; Preserve us from faithless fears and worldly anxieties, and grant that no clouds of this mortal life may hide from us the light of that love which is immortal  and which thou hast manifested unto us in thy Son, Jesus Christ our LORD.  Amen".

Please be praying friends.  Around 11:30am Stephen be wheeled away from us again...it brings me tears just thinking of it.  I can't begin to to put into words what it feels like to leave his side knowing what he is about to go through.  I wan't to hold him close and never let go.  He is my baby and I couldn't love him more...but somebody does and that is where I find my hope, my comfort and my peace.  I know that when we can't be with him...God can.  He has never and will never leave Stephen's side, or ours, and we know we can put our faith and trust in Him.  But it hurts...deeply hurts.

So many people have asked how they can help us and right now 2 things come to mind.

1.  Prayer.  Please pray fervently for him today.  Pray that the surgery is a success with no complications.  Pray that his body tolerates being on bypass once again.  Pray that God would guide the surgeon and team and pray that his recovery would be quick and "uneventful" and that his body will easily adjust to it's new circulation.  

2.  Please consider making a donation in honor of our little Heart Hero.  It doesn't take long and your gift will go directly to the Heart Institute at Rady Children's Hospital and will support the life-saving efforts of children like our little Stephen.  We feel honored to be able to give back in this way and would love your support in doing so.  I can't think of a better day to hit or surpass our families fundraising goal.  You can find the information on the website below

http://shamuandyouwalk.org/stephenrussell

Thank You all for supporting us through this journey.  We serve a mighty God.

Last picture before we left

Jeremiah 29:11-12 
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.  Then you will call upon me and come and pray to me, and I will listen to you. 

Pre-op went well today and we are all set for tomorrow.  After spending a little over 4 hours at the hospital were blessed to spend some much needed "distraction time" with our kiddos at a hotel.  We were hoping to stay at the residence in off Scripps/Poway again, because we just loved it there, but when I checked online they only had a 2 bedroom suite for $319/night...a little over our price range =0)  So I made reservations for another Marriott by the hospital and was planning on checking in there today.  During the pre-op I got a call from my amazing friend Jenni who put in a call to the Manager (she used to work for him) and told me she got us 2 nights there...we were stoked!  I called the other hotel and canceled and told my mom where to meet us.  That alone was a blessing...but wait...there's more.  Are rooms were comped...que tears.  This hotel is run by the most amazing people who have shown so much love to our family.  This was such an unexpected blessing.  But it doesn't stop there.  We went swimming with the kids, and had a BLAST, and when we got back to our room we found these...

 With this note...

Yes I cried.  Their generosity and thoughtfulness was touching and brightened my day.  Thank you dear friends for putting smiles on our faces!  You have gone above and beyond what I could have ever dreamed of and have blessed our family tremendously.  I can only try to explain how great it feels to be loved and supported by so many different people from different places and walks of life.  Your kindness encourages us and gives us memories to look back and smile upon =0)
It was hard saying goodbye to Michael, Lizzie and Audrey.  Lizzie was hurting.  She is worried about Stephen and afraid for him to have this surgery.  She literally kept talking about them "cutting his belly"  She is so sweet and so loving.  I did my best to put her worries at ease and let her know that the doctors are helping Stephen to be stronger and will take the best care of him but that more importantly God loves him and will be watching over him.  That and a cartoon on the car ride home seemed to do the trick =0)
Please pray for the surgery tomorrow.  During pre-op we had to hear so many possible outcomes (things that can go wrong) that it can be a little disheartening.  They will be operating near certain nerves that can becomes damaged, his diaphragm can collapse, he can bleed too much or form a blood clot that ends up in his brain or lungs, etc.  Please pray that NONE of those things happen!  Pray that the surgery goes smoothly and that he recovers well with no adverse side effects.
And pray for our hearts.  I know how difficult tomorrow and the next week will be.
The scheduled start time is 11:30...but since he is the second case of the day it could get pushed up or back.  The surgery will take somewhere between 4-6 hours so I don't anticipate being able to see him until after dinner.  I will try to post a quick update when I can and will give more info after we have been with him.

Thanks for your prayers...we know how powerful they are. 

With Much Love and Gratitude

The Russell Family

Well it is almost here.  I  am doing my best to hold it together, whatever that means, but really I am just a ticking time bombs of emotions.    The past two days I have felt ill just thinking about it.  My stomach is in knots and I am trying my best to hold back the floods of tears I know are building up.  Now just isn't the time.  I want to fully enjoy today with my 4 beautiful children.  I want to be joyful, truly joyful, in this moment.  I am so grateful for each of them.  There will be a time for tears...lots of tears, but I want this last day together to be about what we have, not what we could lose.  Honestly I just praise God that one day there will be no pain, no heart break, and no tears.  As hard as this journey is...this earth is the only "hell" we will know.  One day it will be wiped clean and these "momentary troubles" will be gone FOREVER!
Joe and I need to be at the hospital at 8:15 tomorrow morning for a 4 hour pre-op.  We are opting to stay at a hotel tomorrow night to avoid a longer drive in the car with a baby that is not allowed to eat as well as to avoid the sweet but heart-wrenching goodbyes from his 3 siblings.  They ask so many great questions and shower him with so much love, but I don't think we could handle giving answers Friday morning...I honestly doubt I will be able to speak.  We are hoping to have them down for dinner tomorrow night and let them give him big hugs and kisses then.

Please continue to pray for our brave little hero.  He is so strong and amazing.  Pray that all goes well with pre-op in the morning.  I know it will be a lot for him... tests, lab work, etc.
 
We will try to give an update sometime tomorrow night.

With Much Love,
Kim

2 Corinthians 4:16-18 
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal. 

Please pray for Stephen's health.  So far so good but he has had a clear runny nose off and on (which is most likely due to teething) so I called the surgeons office yesterday (per their instructions).  They want me to call back on Monday to make sure it doesn't turn into anything.  The surgery is only a week away...yikes!  We want our little guy to be strong and healthy and able to go through with it.  Worse case it gets postponed but in a sense we are ready to just get it over with and prolonging it would be a slight bummer.
So please pray that he is A OK!

This morning, like many other mornings, I just smiled and laughed at this little guy.  He cracks me up!  He is cooing so much and gives the biggest most adorable grins.   I find my self constantly giving him big squeeze hugs and kisses all over =0)  He is such a blessing and I am lucky to be his mommy.
Thanks for your prayers!
Much Love
Kim

I wanted to share some recent photos of the little guy.  He is a drooling machine!  It looks like he is ahead of schedule with teething...for whatever reason my kiddos start around 4 months and have them all before their first birthday.  He is constantly putting toys, teething rings, fingers or his entire fist in his mouth.  I think I may have also forgot to mention that he has been rolling over which is so awesome!  So far he is developmentally right on track and we just pray that it stays that way =0)

The Teether

The Fingers

The Fist

The Drool

Stopping long enough for a smile =0)