We just wanted to give a little update on Stephen.  He is doing AWESOME!!!  He is staring to sit up on his own (he sits tripod style with his hands) and is even scooting forward on his belly.  2 Surgeries sure didn't phase his development...he is right on track!   He is laughing and cooing and cracks us all up when he flails his arms in excitement.  He amazes me.  He is so strong and wonderful and has the best chubby cheeks to kiss.
Tonight I teared up as I held him and prayed.  He is such a miracle.  His life has taught me so much and I am so blessed to be his mom.  Joe and I took the family to Legoland today...it was Stephen's first trip from outside my belly =0)  We bought passes 2 days after we found out about Stephen's condition.  At the time it was just what we needed...a fun distraction from a scary reality.   We easily went a dozen times before he was born and had a blast watching the kids faces light up each time.  Today we got to share that with Stephen...I smile just thinking about it.  Our family of six got to be there together.  It may seem so simple but to me that is a huge deal.  Being able to create memories together with ALL OF US at Legoland...we have come so far.   6 weeks ago he was in the hospital undergoing his second heart surgery and today he got to stroll around a fun theme park with his 3 best buddies and go on his first rides!!!  A cute little train ride on my lap and a boat ride on dad's.  God is so good.  I wish I brought my camera so I could share his smiles with you.
Our family is blessed beyond words for so many reasons and today was great reminder of that.  I remember feeling so broken 9 months ago when the doctor delivered the news about my sons heart.  It crushed me hearing that part of his heart hadn't developed correctly and that he would have to undergo multiple surgeries to live.  I can still replay that day vividly in my head, and looking back, I would have never believed my life would be filled with as much joy as it today.  I am happy, joyful, grateful and blessed beyond measure.  I have grown so much, learned a ton and look forward to seeing how God will use his story/our story in the future.
Here are a few recent photos of the big guy...next time we go to Legoland I am bringing my camera =0)

One last thing...we have 1 more week before the big Shamu & You Family Walk.  Our family will be walking with team HEART HERO and all money raised by our family, and our team, will be benefiting the cardiology department at Rady Children's Hospital.  I first want to thank everybody who has already contributed or has joined our team and will be walking with us...your donations and support mean so much to us.  Every time I get an email saying a donation has been made I jump for joy.  We feel so honored and blessed to have your support.  THANK YOU!!!
If you haven't yet had a chance to do so, please consider making a donation in honor of this sweet heart hero.  It only takes a moment and will make a difference!  Just click on the link below...it is easy peasy!!!  And if you are looking for something to do next Saturday...sign up and walk with us!!!
Either way we appreciate your support and hope to raise some more money during this last week!
http://shamuandyouwalk.org/stephenrussell
THANK YOU!!!
With Much Love
Kim

We just had Stephen's follow up with his cardiologist yesterday and everything is looking great!!!!  

He doesn't have another appointment scheduled until December 21st...that means a 3 1/2 month break!  He will go in at 6:30 that morning for a sedated echo and EKG and then if all is still well he will only be followed by the cardiologist every 6 months.  I can't begin to tell you how odd that will be.   The crazy amount of doctor visits began in pregnancy when I had to drive down to San Diego twice a week for fetal ultrasounds and non stress tests.  There were some weeks when I had to make the drive 3 times.  Then a month hospital stay, 2 months of twice a week nurse visits, monthly cardiology appointments, X-Rays, a Cath Procedure, and another surgery...this break will be sooooo nice!!! 

It is hard to believe all this little guy has been through, but through it all he has been so blessed.  We are so grateful for all of those appointments, as crazy as it has been, because we were blessed with amazing care by some truly great people.  

Stephen is thriving now.  He nows weights 15 1/2 pounds and is LOVING solid foods.  I think he is our only child who scarfed down peas =0)  Sleep has not come yet...we were up 5 or 6 times last night, but he is happy and "healthy" and we are just so glad we have him.    

I need to figure out how to put a video on here because he is a crack up.  He is loud and fun and loves to laugh.  Yesterday he just looked up at his doctor and babbled babbled babbled.  He was a crack up and made the whole office fall in love with him again.  God has given him such a sweet personality.   He is so joyful and smiley and I am just one blessed mommy =0)

Thank you for your continued prayers.

We pray that God would continue to strengthen Stephen's heart and use his story for His glory!

1st Cold

Stephen seems to have got his first cold this week.  He is pretty congested and has a little cough.  We took him to the pediatrician right away...it felt kind of weird doing so.  I would not have taken any of my other 3 in with his symtoms, but with Stephen we have to be cautious.  The pediatrician decided to put him on a 10 day antibiotic to be safe.  He even said the same thing...he wouldn't have prescribed anything if it was any other child.  So once again Stephen is a special case =0)  I am thankful they are so careful with him and that they wouldn't wait until it got worse to treat him.
Please pray that the drugs take care of this and that it doesn't develop into anything else.  He was already having a hard time sleeping at night and this has made things so much worse.  Last night Joe and I were up from 2am-5am with him...not fun.  I almost grabbed the camera to take a picture of his big smiles but I was too tired to search for it.  I look forward to him sleeping well again.  He was almost sleeping through the night before this last surgery and now things are just a little crazy.  Even just 2 or 3 hours of straight sleep would be a dream =0)  I used to be able to sleep in but now that I have kids in school I have to be up by 7 too...yuck.  This morning I was a little crabby but I have since been able to chill out and be extremely grateful for what I have.  I got to spend the morning with a good friend over a cup if coffee.  It was just what I needed.  
Thanks for your prayers friends!  We see the cardiologist on Monday and will let you know how he is doing =0)

The sleeping is getting a little better, he is waking up every 2-3 hours instead of every hour, and he doesn't always let out a blood curdling scream... so that is nice =0)  I decided to introduce rice cereal to see if it would help the sleeping situation any.  He was way into it the first 2 days but has been a little hesitant since.  I did however capture some cute pictures...

I can't get enough of those big blue eyes!  Well things are hopefully slowing down on this blog.  We have a appointment with his cardiologist on the 10th (I will post an update on it) but it will hopefully be quite for awhile after that.  He does have one more planned heart surgery (around the age of 3-5) and after that who knows.  There is not a whole lot of research since he surgeries are relatively new (30ish years).  We have been told he will most likely need a heart transplant in his 20's or 30's, but with God's grace we will take it one day at a time.  I can't thank you all enough for being a part of this journey with us.  Thank you so much for your prayers...we watched God work miracles through them.
I will periodically post updates on here as Stephen hits some milestones to keep this blog as a journal of his life but in the meantime I have also started a new blog to capture our crazy/fun life at the Russell house.  If you would like to check it out go to  www.russellpartyofsix.blogspot.com 
We have a lot going on here these days....My oldest starts Kindergarten tomorrow and our second child starts preschool on Thursday!  I look forward to capturing some of our life and sharing it with you =0)
Once again THANK YOU for your love and support.  I recently went back to the beginning of this blog and read my way through this journey.  God has been so faithful and we have grown so much as individuals, a couple, and a family.   I am humbled by our saviors love for us and grateful for his mercies.
As crazy as this road has been it is only the beginning of what we pray is a beautiful life.  He has so much joy inside him and I can't wait to see what God has in store for Stephen and his special heart.

Thank you Lord for this life, may you be honored and glorified through it.

"Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen".

Ephesians 3:20-21

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.