Nicholas' Heart Surgery :(

I am introducing my dear friend Kristi to you today.  Kristi and I have gone to church together for a few years short of a decade- Over the course of those years I have seen first hand the incredible faith Kristi and her family display's as they face the medical issues their son Nicholas has had to endure.

Kristi- It is with a heavy heart that I post this blog tonight........I love you friend and will be faithfully praying as your family get's ready to head to Stanford for Nicholas 3rd heart surgery- May God Bless and keep you all-
SCROLL DOWN TO READ NICHOLAS' STORY..................

Nicholas

NICHOLAS' STORY AS TOLD BY HIS MOM KRISTI:
There is nothing more heart-wrenching than saying goodbye to your child as a medical team wheels him through those double doors to take him into surgery.  Waiting for 5 or 6 hours knowing that his heart is stopped and a machine is keeping him alive – horrible.  And there are no words for how a mom’s heart feels seeing her precious boy for the first time after surgery with tubes and wires attached to seemingly every part of his body, eyes closed, body limp, not able to breathe on his own.  Knowing the kind of pain that he will be in when he eventually wakes up.

Yet in the midst of the physical and emotional pain is peace and blessing.   God is so real you can almost feel Him.   Surrender…… at some point in our journey, we had to surrender.  That moment is forever etched on my heart.  My little guy was fast asleep and I was sitting by his bed watching him sleep.  Then, the tears started flowing and the prayers.  At that moment, I knew that every time I had ever said, “My children are yours Lord, I trust you,” there was a piece of me that didn’t completely mean it.  I trusted Him, but asked (begged) that He not let anything bad happen.  I wanted His will but I wanted some control, too. I knew He loved them but that had to mean He’d never let them suffer.  So, that night for the first time I started to mean that prayer, really mean it.  No matter the cost, God’s plan was the best.  When that plan was done, He would take my children home.  And, I had to be o.k. with that – I either trust Him or I don’t………..

I guess I should rewind so you can follow our family’s story from the beginning….

It’s a boy!! A perfect, healthy, beautiful baby boy – the words every expectant parent longs to hear when birth day arrives.  They were the words we heard when our son Nicholas was born almost 12 years ago.  Those words were the answer to our prayers of “It doesn’t matter what we have, as long as he or she is healthy.”  We never imagined what a crazy, amazing journey we were beginning after such a “normal” start to our son’s story.

When Nicholas was a year old, we were blown away to find out that he had actually had a heart murmur since birth but we were not told since “these things usually disappear on their own.”  And then imagine the shock when the cardiologist said he had a congenital (meaning present at birth) heart defect that would need surgery some day.  Much to our relief, his defect was fairly minor and in the vast majority of cases, completely fixed after surgery with no long-term problems.

Well, it hasn’t quite worked out that way.  His first open heart surgery occurred the day after his third birthday.  The defect was repaired but our surgeon told us it was not “normal.”  We’d have to give it some time to see what that would mean for Nicholas.  It didn’t take much time. Six months later, it was clear that something unexpected had happened in his heart.  Now his aortic valve didn’t work properly.  Six years later he went in for his 2^nd surgery with a badly leaking valve and an enlarged heart.  To our great relief, the surgeon was able to fix the valve that, as it turns out, had been damaged by his original problem.  Our world-renowned surgeon was highly confident the repair would last at least 5 years.

Today, Nicholas’ journey is still winding around turns that we don’t understand.  It’s only been two and a half years since his 2^nd surgery but on March 23^rd, he goes back in for #3.  His leak is bad again, his heart has enlarged further, and sometimes he feels winded or tired.  We get to choose between crummy choice A and crummy choice B.  A biological valve that will only last 5-10 years or a mechanical valve that requires daily blood thinning medication and monthly blood work.  And, in all likelihood as his heart grows, either valve will become too small.  He will almost definitely need a surgery #4.

To be honest, there are moments I feel as though I’ve been punched in the gut; I can’t breathe, and I just want to throw up.  But most of the time, I am so thankful for our journey.  I have watched God provide for our needs and bring amazing people into our lives.  I see how my son affects the medical staff he is around and how he touches their hearts.  I have a compassion for families in crisis that would not have existed before. I am thankful for the perspective change when I see the kids and their families in the hospital who are facing terminal illness, months in the hospital, and those precious little bald heads.  I have learned that my definition of perfect is not God’s definition and there are no mistakes. I would never choose this story for my son.  But it is the one God wrote for him. 

I asked Nicholas what he would say to people about his heart.  Here are his words: “I’m ok with having a heart condition.  I can’t do a lot of things that other kids can do with a normal heart.  But, with my heart condition I can tell people that they can get through anything.  God helps me to always look forward (to after recovery) and not focus on what’s about to happen (surgery).  Sometimes I pretend not to have a heart problem and that helps me.  If you know someone who is going to have a baby soon, don’t expect the baby is going to come perfect.  Bad things can happen to people close to you.  Nothing bad happens without a purpose.  God has a plan.”

Of course, we would appreciate prayers for his upcoming surgery and recovery, for financial and logistical issues, and making wise choices for Nicholas.  Thanks for reading our amazing & courageous son’s story.

Blessings,

Kristi

L to R: Lenny, Kailynn, Nicholas, Kristi, and Jacob