Renewing Faith

Natalie Easter Egg Hunting in the snow

The changing of season brings about reflections for me.  I guess I'm getting old enough that I have enough memories to be reborn every year as I review previous years.  In January and February, I started to review Natalie's heart story on her Caring Bridge website.  I laughed at some of the things that happened, remembered the times when I just had that sinking feeling in my heart and re-lived the day that I was ready to give up and just let her go to Heaven.  I look back and realize that at Natalie's birth and the first several weeks into our journey with her failing heart, I really didn't acknowledge the severity of her ailing heart.  I heard the doctor's say, "You have a very sick baby"  and "We are going to be doing surgery so she can survive with the half of her heart that is still functioning."  It reached my mind, but didn't make it to my heart.  Maybe it was God sparing me from the heartache so I could make it through moment by moment.  Maybe it was denial on my part.  I don't know.  I do know that the peace that both Tim and I experienced was from the myriad of people we had praying for us.


I think my lowest point emotionally came the day before Valentine's Day 2008 when the doctors told me that it was time to consult with the Heart Transplant Team.  The arrhythmias that she had developed were life threatening to her little heart.  I couldn't imagine enduring any more time away from my family and enduring endless hours in the hospital.  Just the idea of all the waiting for a transplant and then all the follow-up flying back and forth to Seattle just seemed insurmountable.  She had already been through so much, I figured the Lord just wanted to take her home.  I was ready to give her up.


God had other plans for her.  Five days later, her arrhythmias were controlled and her heart and lung function were good enough that she was taken off of the ventilator.  As we met with her heart surgeon we were told that "Natalie's reaction to the Sotalol for her arrhythmias is unusual and surprising. He said that usually the arrhythmias are not totally controlled by this medication."   My response was, "I think he's forgetting to figure in the 'God factor'."   In further conversation with this doctor, we discussed the specifics of Natalie's heart and long-term prognosis.  I brought up the idea of her left ventricle growing since it still had blood flow going through it and it did have a little function.  His response was disappointing when he said that it wouldn't probably grow.  He'd never seen it happen.  It seemed that once your child was diagnosed with HLHS and only one functioning ventricle, it was a sentance.


Fast forward almost 4 years to the day, February 17, 2012.  I was going about my normal morning activities when I get a phone call from Dr. Lewin from Seattle Children's.  He had been doing some review of Natalie's last heart echocardiogram with Dr. Brauner as he was coming up every two weeks to fill in for Dr. B (who is retiring).  His next statement floored me.  "We've been looking at the echo and are thinking that Natalie's left ventricle may have grown to the point that it may be able to sustain function to her whole body."  He explained that as we are coming closer to the time when Natalie will be needing her Fontan surgery, he would like to explore "other options" instead of blindly going down the Fontan route.  


I asked him, "So how often does this happen when a diagnosed HLHS kid has their left ventricle grow."  

Dr. Lewin said, "Very rarely!"

Tim and I went and had a meeting with Dr. Lewin in March.  We still have many questions about the possibility of what might be done-reversal of her first surgery or something else.  I, with my critically thinking mind on pathophysiology, have racked my brian with all the possible combinations.  It's been hard not to dwell on the possibilities.  It's exciting and scary all at the same time.   When we talked about the longevity of a post-Fontan HLHS heart, Dr. L said typically a transplant is needed in 15-20 years.  Plus there is a myriad of other problems that can arise.  So if there is a possibility that Natalie could function with a 4 chamber heart, this would be of great benefit to her long-term prognosis.

All I could think about were all those prayers that we and others have offered up for our family and little girl.  When we were discouraged, God said, "Don't be afraid, for I am with you.  Don't be discouraged, for I am your God.  I will strengthen you and help you.  I will hold you up with my victorious right hand." (Isaiah 41:10 NLT)  


I think I had faith enough to say that our little girl would be with us, but this miracle that God's given us is by far more than I could have ever imagined.  There are times that I wonder "Why me?  Why Natalie?  Why do we deserve such goodness?"  We don't.  It just comes down to Natalie's middle name, "Grace."  We are experiencing grace-something we don't deserve and haven't earned.  It's God's gift to us.  "He gives power to the weak and strength to the powerless." (Isaiah 40:29NLT)  "The Lord is the everlasting God, the Creator of all the earth.  He never grows weak or weary.  No one can measure the depths of his understanding." (Isaiah 40:28 NLT)  While I still wrestle with the trials these little ones must go through, I can see that maybe, just maybe, God wants to show His power to the world through those who trust Him.


So now we are trusting the Creator of the Universe in His plan for our child.  We are trusting Him to give the doctors wisdom as they do an experimental heart cath the end of this month to see what her heart function really looks like and find the numbers that will guide them in what to do next.  I would love to hear again, "This is very unusual and surprising."  So I can say, "Don't forget the God factor!  He can do anything!"


Please join us in prayer for wisdom all around and praise to our Lord for what He has done!