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

Mother's Day

This Mother's day was the year anniversary of bringing Stephen home!  I remember how strange it felt to hold him in our arms without multiple wires.  It was the best!   The first night we hardly slept...let's be real the first year we hardly slept...but God has faithfully seen us through it all. I am one blessed Mommy =0)
Here is my attempt at a Mother's Day photo with my kiddos...

This Mother's Day was special.  Our family went to see Sanctus Real (and JJ Heller).  Matt Hammitt, the lead singer, is the one who wrote the amazing song "All of Me" that I have posted on here previously.  Well, we got to meet Matt yesterday and he held Stephen =0)  I teared up for sure.  2 fellow heart families were there as well and we even got a picture of Matt with our 3 little heros.  It was simple but special.  His words in that song are very dear to me and to have the chance to tell him that was special.

The day after Stephen's 1st birthday I had the opportunity to speak at our local MOPS group.  I was nervous...like remember to breathe before you go up nervous...but God helped give me the words as I shared Stephen's story and our journey for 40 minutes.  It was way out of my comfort zone, I am a behind the scenes person, but so perfect.  I loved the opportunity to share what God has done in each of our lives. I want Stephen's story to be told.  I want people to be encouraged by God's strength and provision.  I want them to know the hope that comes in knowing Christ.  The night we found out about Stephen's heart we were devastated and we prayed that God would either take it away or use it for His glory.  Being able to share all of this with other moms gave me a little glimpse of how God can and will use our pain for good.  I am so grateful for that.
At the end of the talk I showed this slideshow.  It was updated to include photos throughout his first year...and was to Matt's beautiful, touching, always makes me cry, song.

Enjoy!

Happy Belated Mother's Day to all you amazing mothers out there!  

A year ago today...

A year ago today Joe and I woke up and didn't say a word.  Before we left our room at 5:51 in the morning I typed the shortest post ever on this blog "I have no words...please pray".  We hardly slept the night before and wanted to be in Stephen's room extra early.

A year ago today we held Stephen as close as possible.  Joe and I took our turns with him in our arms.  We held him, kissed him and spent time just looking at him trying to soak up every detail from his fingers to his toes.

A year ago today doctors and anesthesiologist came by our little room and explained to us the surgical procedures and all of the potential risks associated with it.  Though we had heard them before, the reality of them sunk in as we signed paper after paper.

A year ago today we got the call from the OR...it was time.  We quietly followed behind our son as the nurses wheeled him through halls and down elevators.

A year ago today Joe and I had kiss our baby goodbye not knowing if he would return.

A year ago today we handed over our child.  We had to put our confidence in the surgeon and his team and our hope and trust in God.

A year ago today I had to wait.  I cried and prayed for hours.  I prayed for every person in that operating room and that God's spirit would fill it completely.   I cried at the thought of Stephen lying there still and unaware of what was going on.  I prayed that God would guide the hands of the surgeon and that He would work through him to help our son.  I cried at the thought of what was being done to him and prayed for angels to surround him.  I prayed and cried until I fell asleep in Joe's arms and then I prayed and cried some more.  I prayed that we wouldn't get a call too early...that nothing would go wrong.  I cried at the thought of losing Stephen and prayed to God for his life.

A year ago today the wait was over.  We received the call that he was out of surgery and that the surgeon would be meeting with us shortly.  We smiled, hugged and anxiously went to the waiting room.

A year ago today I looked into the eyes of the man that saved my sons life.  The surgery went smoothly and Stephen came out of the OR with his chest closed...almost unheard of.  I was so grateful. He said we weren't in the clear yet and that the next 24 hours would be telling...but that so far everything looked good.

A year ago today I braced myself as I walked into my sons room not fully knowing what to expect.  On our way in the doctors and nurses said he looked great..."great" looked near death to me.

A year ago today our son went from this...

                          to this...

A year ago today we felt relief.  We praised God that he was out of surgery and already doing so well. We were physically and emotionally drained.  We felt relieved to be back with him and that the worst was now over.

A year ago today I relied on God in ways I never had to before.  I  understood what it meant that He was my refuge, my fortress and my rock.  I poured my heart out to him and he heard my cries.

A year ago today was the hardest day of my life.

It is a hard day to reflect upon because it was so painful.  But today I sit here in a hotel room so grateful and amazed at what a difference a year has made.  A year ago today Stephen was sedated with so many wires, tubes and lines coming out of him...and today...Today he is this bright eyed handsome little boy who is so full of joy and has a smile that lights up a room.

We want to thank you all for the prayers that have covered our son on this journey.  God has blessed us through them...thank you!  We are so appreciative of all of you!!!

God Bless!!!

Happy Birthday Buddy!!!

Dear Stephen,
Words cannot express how much I love you.  Your life has changed me for the better and has taught me to love deeper than I ever knew was possible.  You are the happiest kid!  Your smile is contagious and you fill our days with laughter.  God has given you something extra special that just shines from you.  Everyone who meets you sees it  =0)  You are the strongest little boy I have ever know and I am honored that God chose me to be your mommy.

Happy Birthday Buddy!!!  I love you!!!

Love,

Mommy

1 is around the corner!

In 12 days Stephen will be 1!!!   We have been blessed beyond measure with his life and we are looking forward to celebrating all God has done this past year.  We couldn't think of a more perfect place to celebrate Stephen's birthday than right back where it all began.  On April 17th we will be going down to the Ronald McDonald House to make and serve dinner there and at the NICU.   My mom and I are hopefully sewing some soft little cuddle blankets for the babies in hospital this weekend and we are hoping to bring some gifts down to the Ronald McDonald house too!  When we checked into our room on Stephen's birthday they gave each of our children a stuffed animal.  It is hard to describe how much that meant to Joe and I.  Seeing our other 3 children full of joy helped ease the difficult situation we had just entered.  I know I have said what a special place the Ronald McDonald House is before...but that is because I mean it.  They go above and beyond to make families that are hurting feel loved and cared for.
On Stephen's birthday we would love to shower them with gifts for families like ours.  If you would like to join in our efforts in buying new stuffed animals, coloring books & crayons, or toys that kids could use in a hotel style environment we will be taking all donations down with us on April 17th.  If you are in the Orange County area gifts can be given to my family members and they will bring them down to us on the 13th and of course if you are in the Fallbrook area you can drop them off with Joe or myself.  We feel so blessed and would love to be able to bless others on such a joyous day!  If you have any questions feel free to email me at kdrussell04@aol.com

As for a little Stephen update...he is doing great!  His personality has been coming out more and more. He is a crack up.  He loves to smile with all his teeth and has the best giggle.  He plays peek-a-boo, climbs up and down stairs, points to his nose and says mama all day long.  He adores his siblings and they think he is pretty great too!  Here are a few pictures of the almost 1 year old =0)

Stephen loving on his cousin Dominic...so cute!!!