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