Amazing Advancements

The advancements made in the medical field always amaze me.  If I were born with Stephen's condition I would not be alive, but over the last 30 years they have developed and improved upon a series of three surgeries that has brought some adults into their late twenties...amazing...but not good enough.  Stephen has only one functioning ventricle and his 1/2 of a heart has to work extra hard.  "In the normal heart each ventricle does a separate job. The right ventricle pumps blood to the lungs, and the left ventricle pumps blood to the body.  In a single ventricle heart, there is only one ventricle large enough to do the normal job of pumping blood. This ultimately requires committing the single ventricle to doing the harder work of the heart, pumping blood to the body while the job of getting blood to the lungs must be done without a pump".  In Stephen's case his single ventricle pumps blood returning from the lungs to the body, and the blood returning from the body travels to the lungs by direct blood vessel connections without ever entering into his heart or a pumping chamber.

The 1st two surgeries began this configuration where all of the oxygenated poor blood from his upper body bypasses his heart and flows passively through the venous system into his lungs. The third surgery will finalize that flow by connecting the lower half of his body ultimately making all oxygenated poor blood flow into his lungs to be oxygenated and will then enter his heart to be pumped out to his body. 
Crazy...right?!  He looks completely normal on the outside...but his entire system is plumbed so differently on the inside.  

I am so grateful that they have made these advancements and have these 3 surgeries.  Without them he wouldn't have survived more than a week.   However these surgeries are only palliative..meaning they only prolong life but do not cure his condition.  They have found that this type of circulation works for about 20 years (if the heart continues to pump strongly and no major complication arise) but the single ventricle tires out and a heart transplant may be necessary.  

Here is where research becomes so exciting.  The advancements being made are incredible.  Here is a short video that describes how some amazing advancements will be put into a clinical trial of 10 patients undergoing the 2nd surgery using stem cels banked from the child's cord blood.  
Stem Cell Use in Congenital Heart Disease
The hope is that these stem cells strengthen the single ventricle to give it greater durability and power to pump blood throughout the body.  This can potentially be amazing as Stephen gets older.  My hope is that this will be able to delay any heart failure or need for transplant for a time...or buy time before they find some amazing "cure".  The key however is funding.  
Funding = Research = Advancements = Life
I am so excited to help support CHD Awareness and research because it will make a difference in the life of my son and of so many other children.  The research brings hope to families like our and patients like Stephen.  Hope that they will one day find a "cure" or better way to make their 1/2 a heart function like a whole one.  
So as part of CHD Awareness Week I would like to show you one place you can donate towards this life saving research.  
You can donate to the Mayo Clinic 's research Center for Regenerative Medicine..the amazing center making this stem cell research possible!  

Here is al little more about the Mayo Clinic

and Here is where you can donate!  Giving to Regenerative Medicine


And while I do hope Stephen will benefit from these advancements and that a better solution to his condition will be available in the future, my ultimate trust and hope comes in the Lord.  For whether Stephen lives 80 years or 10 years...it is my prayer that his death, or any of ours, will not be the end of life but the launching pad into the glory we were made for.  


Thank you for letting me spread awareness...one blog post at a time!!!!

* Quotations were taken from Cincinnati Children's Website

Heart Awareness Month

February is Heart Awareness Month with 

Congenital Heart Defect Awareness Week being February 7th-14th.  

So lets get the awareness going!

Here is some information taken from Children's Hospital of Philadelphia...one of the leading hospitals in the US for pediatric Cardiology and Heart Surgery.  

What are Congenital Heart Defects?

Congenital heart defects occur in the early stages of pregnancy, when the heart is forming. Congenital heart defects include abnormalities in the heart’s structure, electrical system and other abnormalities that affect the function of a baby’s heart.

What are the most complex types of congenital heart defects?

Single ventricle heart defects, (what Stephen has) are among the most complex and challenging forms of congenital heart defects to treat.

Are Heart defects in children more prevalent than cancer?

Yes. In fact, congenital heart defects are approximately 60 times more prevalent than childhood cancer.

"In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD".

Cancer SUCKS!!!!  But so do CHD's.  The fact is if I was born with Stephen's heart condition I would not be alive.  Research and funding are so important and they have made some amazing life-saving progress over the last 30 years.  

So this coming week, and this month I hope to spread some light on CHD's, the INCREDIBLE research taking place, how you can help, and of course on an adorable 22 month old (yes he is almost 2)!

What can you do?  Share this post and help spread awareness!!!!!

Happy Heart Month!!!

Cold & Flu Season

This is the worst time of year for me.  Any heart family or mama with an "at risk" child understands exactly what I mean while the rest of the world gets to be a little more "carefree".  You see I hear the word "flu" and want to board up my house and keep my kids far far from you.  The flu terrifies me.  It can knock down a healthy adult for days and will without a doubt land Stephen in the hospital.  Last year when Stephen had a fever he was sent to the ER to make sure it wasn't the dreaded flu...not the common protocol for most children.  I hated every minute of it.  He had to be held down screaming as they took blood, x-rays, urine, ect.  It broke my heart watching him go through it and I want to do everything within my power to keep him from having to go through it again.  And that was just when they thought he might have the flu...having it would be a whole other story.  While the flu can be serious even in people who are otherwise healthy, it can be especially dangerous for Stephen as he falls into the category that is at "high risk for serious flu complications".

So in an effort to protect our little guy and others like him I thought I would help educate readers   =0)
Here is a little information from the Center of Disease Control and Prevention...

How does the flu spread?

"People with flu can spread it to others up to about 6 feet away. Most experts think that flu viruses are spread mainly by droplets made when people with flu cough, sneeze or talk. These droplets can land in the mouths or noses of people who are nearby or possibly be inhaled into the lungs. Less often, a person might also get flu by touching a surface or object that has flu virus on it and then touching their own mouth or nose."
(I found it interesting that it can spread by just talking.  So many people think they are fine if they just don't cough on people and stand back...not true!)

How long can a sick person spread the virus to others?

"Most healthy adults may be able to infect other people beginning 1 day before symptoms develop and up to 5 to 7 days after becoming sick. Children may pass the virus for longer than 7 days.  Symptoms start 1 to 4 days after the virus enters the body. That means that you may be able to pass on the flu to someone else before you know you are sick, as well as while you are sick. Some people can be infected with the flu virus but have no symptoms. During this time, those persons may still spread the virus to others."

(Extra sucky...people are contagious for 7 days!  I mean it is hard to get people to stay home when they have a fever let alone once they "feel better")

By no means do I actually expect people to stay home for a week when they are sick (though it would help)...but I wanted to take the time to inform people of just how contagious the flu is and that there are people out there who are at a much higher risk of severe complications.  The standing doctor orders are for our entire family to not to be around anyone who is sick with the flu or even anyone who has been around someone who is sick with the flu as they can be carrying the virus and can be contagious before symptoms arise. While I would prefer to be a little more carefree I am happy to be a germaphobe if it keeps my little guy healthy.   

So please pray that we can avoid flu as they have already said it is going to be a rough season.  I know God is in control and I am grateful that I have my precious man to be protective of =0)  
And say a pray for Pastor Charlie.  We worked with him and his wife Elaine during our short year in Carlsbad.  He is in the ICU on a ventilator from H1N1...something I am sure they never expected.  The flu this year is no joke.  So please pray that Charlie makes a full recovery and pray for peace and strength for Elaine during such a scary time.

And this cold & flu season see what you can do to spread the love...not the germs!

Much Love,

Kim

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