Cardiology Check Up

Yesterday was Stephen's 6 month check up with the cardiologist.  The doctor said everything sounds wonderful and that he will see us in 6 months for a full evaluation including an echo.  This time around he only had to have a chest X-ray and EKG...no echo.  I am always a little nervous/anxious leading up to these appointments.  On one hand I expect to hear only good results because he doing so well but on the other I know a list of complications that can easily arise.  I am beyond grateful for the good report and pray that Stephen's heart continues to function well.

He is a charmer for sure and he is getting so big!  He is no longer a baby but somehow grew into a little boy.  His adorable squinty eyed smile melts my heart and he asserts his independence more and more each day.   He picks up his bowl and drinks the rest of the milk when he finishes his cereal and helps empty the dishwasher.  He loves building with legos and coloring with markers (I need to get more washable ones) at the table while his sibling do their school work.  He loves to sit in my lap and read the same book over and over and over and leans in to give me kisses any time I ask...well mostly =0)
Life is good and we are very blessed.

As for prayer requests...please continue to pray that Stephen's heart remains strong and healthy and that our family can avoid all these nasty bugs going around.  I go into a minor panic mode when I hear "flu" because I know full well what that word can mean for Stephen.
Thank You!
~Kim

Here are a few recent pictures and even a video of the little guy =0)

Riding the train with his proud Big Brother

                                   

2 Years Ago

Two Years ago today we found out about Stephen's heart condition.  It is one of those few moments in life where I can vividly playback the entire experience.  I can still hear the doctors words, feel the tears stream down my cheek and remember the thoughts that rushed through my head.  Two years ago I was broken, scared and felt hopeless.  I questioned God and blamed myself.   While I could hardly comprehend the road before us I cried in Joe's arms until I had no more tears and eventually that night came to rest on the foundation of our faith.  I remember promising God I would do my part to remain faithful to Him...and telling Him that if my son was going to suffer...good was going to come from it, and I wasn't going to stand in His way.
Looking back on these past two years I see God's abundant faithfulness.  God has used our journey and Stephen's heart to touch so many lives.  Recently we have been blessed by hearing how our faith has inspired a commitment to God and I can hardly begin to let you know how that makes me feel. Knowing that one more soul will be in heaven, that one more life has experienced God, that news gives purpose and meaning to our suffering.  I literally smiled and thanked God.  I thanked Him for His faithfulness.  I thanked Him for using something so painful to bring about something so beautiful.
As I mentioned last year, the Christmas season brings out a variety of emotions.  I love the songs, smells, colors and "cheer" that comes with it.  But for me this time of year also brings the reminder of our desperate need of a savior.  The song "Mary Did You Know" makes me full on ball.

"Mary did you know that your baby boy would some day walk on water?

Mary did you know that your baby boy would save our sons and daughters?

Did you know that your baby boy has come to make you new?

This child that you've delivered, will soon deliver you.

Mary did you know that your baby boy would give sight to a blind man?

Mary did you know that your baby boy would calm a storm with his hand?

Did you know that your baby boy has walked where angels trod?

And when your kiss your little baby, you have kissed the face of God.

Oh Mary did you know 

The blind will see, the deaf will hear, the dead will live again.

The lame will leap, the dumb will speak, the praises of the lamb 

Mary did you know that your baby boy is Lord of all creation?

Mary did you know that your baby boy would one day rule the nations?

Did you know that your baby boy is heaven's perfect Lamb?

This sleeping child you're holding is the great I am"

These words are beautiful to me.  Jesus's birth, death and resurrection are what kept me from despair.   He will save our sons and daughters and will make us new.  The blind will see, the deaf will hear and my son with half a heart will be made whole.  Christmas, my favorite time of the year, took on such a deeper meaning to me two years ago.   

Okay...I didn't mean to get all sentimental...but well I did!

On a much lighter note...

Stephen in doing incredible!  We go back in January for a 6 month check up (x-rays, EKG and cardiology apt) so please pray that his heart is still fabulous.  

Here are a few recent pictures...

LOVE that smile!!!!!

We wish you all a very Merry Christmas and pray that you have a blessed year!!!

Love

Joe, Kim, Michael, Lizzie, Audrey & Stephen

Fallbrook Froyo Fundraiser!

To all of our local friends...

We will be having a fundraiser at Froyo in Fallbrook on Saturday, September 21st ALL DAY!
20% of your purchase will be donated to the Heart Institute at Rady Children's Hospital!
Just print the flyer below or verbally mention this Team Heart Hero fundraiser and enjoy some yummy yogurt!  They will be open from 11am to 9pm so please mark your calendars and join us in raising support for a great cause!

To our friends who do not live locally...

You can still support our fundraising efforts by clicking on the link below and making a donation.

Russell Family Fundraising Page

Thank you for your support!!!!
~The Russells

Stem Cells

I realized I failed to mention something important in the previos post about the amazing stem cell research being done. The stem cells bring used to improve ventricular function come from banked cord blood or they are harvested from bone marrow taken from the patients hip.  Thankfully we did bank Stephen's cord blood =0)  You can read another article on it here
Our fundraising efforts are well under way!  A BIG thanks to all of you who have already generously donated...it truly means so much to us.  If you would like to join in and make a donation in honor of our little hero just click on the link here
Much Love
Kim

Team Heart Hero

Well folks it is that time of year again...the Shamu and You Family Walk benefiting Rady Children's Hospital is coming up in just over a month and our family will be raising money for team Heart Hero to support the Cardiology department.  

We feel very proud and blessed to be able to raise money for a cause so dear to our family.

So...WHY DONATE?

Do you know what the #1 Birth Defect in America is?

Answer: Congenital Heart Defects

Congenital Heart Defects (CHD's) are the most common type of birth defect and are the leading cause of all infant deaths in the United States.   Nearly one of every 100 babies is born with a CHD.  Crazy right?  Single ventricle defects, such as Stephen's, are among the most complex and challenging forms of congenital heart defects to treat.  His specific defect is rare, occurring in just 5 out of every 100,000 live births.  

Research is critical.  It is amazing to read how far treatment and care has come for children like Stephen.  30 years ago most babies died and now with multiple heart surgeries these Heart Heroes are reaching adulthood.  Amazing.  I want to help.  I want to give.  I want to spread awareness and pray that others join in too.  Last year our family was able to raise over $2,000, and our team around $13,000, to support the Heart Institute at Rady Children's Hospital.  I want to keep that up because it matters.  Research matters.  It changes lives and offers hope.  The advancements that are being made are incredible and I pray that 30 years from now they will be doing even more amazing things for these little warriors and their families.  
This article on Cardiopoietic 'Smart' Stem Cells , shows some of the incredible advances that are currently being made.  The possibilities bring me to tears.

Donations make a difference.  Generous donations have and are bringing exciting changes to Rady Children's Hospital in San Diego where Stephen receives his care.  This summer a new Cardiovascular Intensive care Unit (CVICU) opened at Rady Children's, and because of generous donations, pediatric heart transplants will soon be a reality...amazing!!!!  Last month our family was able to help create the artwork that will be displayed in the unit...SO COOL!!!!!!

Our family will be walking again this year at the Shamu and You Walk and all donations made on our fundraising page will support the continued efforts of the Heart Institute at Rady's where Stephen receives his AMZING care! 

So... please consider making a donation in honor of our little Heart Hero.  Its simple... just click this link http://ShamuAndYouWalk.kintera.org/stephenrussell

In Him,

The Russell Family

A Heartfelt Ramble

I have done a lot thinking since we found out about Stephen's condition.  As a Christian I struggled with idea that God created my son with only half a heart.  I understood that we live in a fallen world and that pain and death exist because of sin but still I didn't know what to do with that knowledge when reading Psalm 139.  How could God, the God of love and compassion, knit my son together imperfectly.  He designed the heart.  He knows exactly how it should be and yet he "knit" it in such a way that it wouldn't be compatible with life...how can that be?  It goes on to say... 

"My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body" 

I am sure you can see where I struggled with this passage.  I never believed that God designed Stephen with half a heart, I knew He allowed it, but he didn't choose this for Stephen or for us as his parents.  Yet other believers in hopes of comforting us said things like "God choose you" or  "God gave this to you because he knew you could handle it".  I mean thank you for thinking so highly of us...but really?  I have thought about those words for over a year and finally had the "aha" moment a few months back when I realized...no He didn't!  God didn't look down upon Joe and I and will for this to happen.  He didn't begin to knit Stephen together and think "maybe I'll give him half a heart for my glory and heck Joe and Kim are strong enough to take it"  Rather Stephen's heart is a result of a fallen world.  I had many conversations with Joe and my brothers about God's design, sin, the fall and all of the consequences that have resulted.  If you only knew how much I have pondered the moment sin entered the world.  I have questioned what it was like and how did it all start to unravel.  How did our genes begin to alter, or tornados begin to exist.  What made the lion all the sudden want to eat the lamb and spiders...why spiders?  
All of these crazy thoughts stemmed from me wanting to know that my God didn't choose this for my son.  I am okay with him allowing for nature to take its course but it never sat well with me think that he chose this for us or anyone for that matter.  That didn't line up with who I knew God to be.  
So funny that I stubbled upon this article tonight.  It very much so reflects some of my thoughts and beliefs on this subject and closely resembles a conversation I had with my older brother...read it Mark...you will smile.

Are Birth Defects Really Part of God's Plan?

I too find comfort that one day Stephen's heart, and all of our imperfections, will be made perfect.  I hold tight to the promises of God and while pain and suffering suck...really really suck...I know that through our pain we are drawn closer to him.  

"Consider it pure joy, my brothers and sisters,whenever you face trials of many kinds,  because you know that the testing of your faith produces perseverance.  Let perseverance finish its work so that you may be mature and complete, not lacking anything" James 1:2-4

While I don't find joy in Stephen's condition, I find joy in God's promise.  I find joy that through my suffering and trials I am being made complete.  I don't believe that God chose this for Stephen but I do believe He will use it for His glory and make us stronger and more complete in Him because of it.  And lastly our sufferings are never in vein when we look to the cross.  Christ himself humbled himself and suffered on our behalf.  It is his suffering and death that gives us true hope.  Hope in what is to come.  We will all suffer, face trails of many kinds and know more pain on this earth than we sometimes think we can bare.  We suffer because of sin and sin alone.  When sin entered the world nature was effected and death became reality.  What amazes me is God's love for us.  That no matter how many times we blow him off, choose idols, money and people over him, he never gave up on us.  He sent His son to pay the ultimate price that we may receive what we don't deserve.  Is that amazing grace or what!  

I know this post is a bit of a ramble.  I read the article and just had to write.  This may not be articulate or very well thought out but I felt the need to share anyway.  While I have wrestled through many thoughts, emotions and feelings I am always amazed at God's love and provision.  He has seen use through every step of the way and given me peace through raging storms.  Reflecting on my own journey I often wonder how one gets through these hard times without God.  I have met so many others who suffer without the hope that we have in Christ and it breaks my heart.   I don't know where this post might find some of you...but he won't give up on you...never.  He didn't will for you to go through this pain or for your child to, but he will see you through it.  He loves you more than you could ever know and He sent His only son to die that you may have eternal life in Him.  There is hope in suffering...you just have to accept it.  Your life won't be perfect but it will have purpose.

‘“The Lord bless you

    and keep you;

25 

the Lord make his face shine on you

    and be gracious to you;

26 

the Lord turn his face toward you

    and give you peace.”’ 

In Him,

Kim

Check Up

This morning Stephen went in for his first sedated echo.  Sixth months ago when he last had one they were not able to sedate him because he had a little wheezing in his lungs.  Luckily we had done our job and made him so tired he just slept through the whole thing.
Today was our first experience with  Chloral Hydrate, the medicine they used to sedate him.  They kind of freak you out with all the warnings like wake them up every 20 minutes, don't let them go into a deep sleep and call 911 immediately if you notice any irregular breathing problems...great.  Stephen wasn't allowed to eat any solids or drink milk for 6 hours prior to the procedure and had to stop clear liquids 2 hours before so I thought he would gladly drink whatever they put in front of him...wrong.  The poor guy cried it all down.  Apparently it can take some kids up to 30 minutes to fall asleep, Stephen fell asleep in 5.  He was out.  Since I had hardly any sleep the night before I myself almost fell asleep during the 30 minute procedure with the lights down low =0)
Once the echo and EKG were done it was time for him to wake up.  This seemed even more cruel.  We kept him up late last night and woke him p early this morning so he would be really tired for them.  We then drug him to fell asleep  give him a 30 minute nap and then wake him up...a little unfair but necessary.  He was a crack up.  The medicine makes him all loopy and well "drunk" looking.  He couldn't control his head or eyes at first but you could tell he wanted to.  We gave him some watered down gatorade and heading over to his cardiologist.  He was way crankier than normal...but what could we expect.  We were supposed to weight 30 minutes before giving him food but we just felt bad for him and caved in earlier.  While waiting in our room he desperately wanted down but he couldn't sit himself up so we went back and forth between the floor and our arms and then eventually fell asleep while we were talking to the doctor in the funniest position.  He was in my arms facing me and then pushed back as to look at the ceiling, so as I cupped my hand beneath his head he just fell asleep in an instant.  It was pretty cute =0)
Onto the best part...Stephen is doing AMAZING!!!  The doctor said he couldn't be doing better.  It felt so great to hear those words.  Such a relief and a praise.  He said he has 2 great things going for him, a strong ventricle and a greta family.  I love our doctor.  But really ventricle and us aside...we all know the greatest thing he has going for him.  I know his story could have gone so many different ways, but God has seen him through it all and has blessed him every step of the way.
He did send Stephen home with a 24 hour holter again for some extra monitoring because of the heart block he experienced during his cardiac catheterization before his second open heart surgery.  Stephen has 7 giant leads taped onto his chest and surprisingly has only pulled one off!  Assuming all is well he won't be seen again until January and he won't need another echo for a year!  It can hardly imagine that...I almost want him to have another one just for my own peace of mind =0) 
Needless to say today was a answer to many prayers...so thank you for your continued support!  We appreciate you all!
Much Love
The Russells