Friday, February 13, 2015

Waiting, Trusting, and Taking the Next Step

Wait for the Lord;
    be strong and take heart
    and wait for the Lord.
Psalm 27:14
It all comes down to waiting and patience and trust.  Unfortunately, those are not easy things and most definitely not second nature.  We wait on doctors.  We wait on appointments.  Most of all, we wait on God.  We try to have patience.  We really do.  It is easier to be patient when we know what is coming, but while we are waiting on God to lead us to the next step, patience does not always come naturally.  Finally, there is trust.  Trusting God is not a one time deal.  Trusting is an active process.  It is a day by day, hour by hour, minute by minute decision to hand over our worries, concerns and problems to the One who has never for a minute lost control of the situation. 

We walked into our appointment on Wednesday full of hope and anticipation of what the panel of experts was going to say.  We walked out deflated and disappointed with their response of, "there is nothing we can do."  We thought we had waited long enough.  We though we had been patient with the process.  We trusted that these doctors would have the answers.  Suddenly, those things came crashing down.  We were reminded in that moment that there is only One whom we can trust completely.  One who holds us while we wait.  One who has ALL the answers.  The response of these experts did not come as a surprise to Him.  That door was being closed and our prayers for a clear direction had been answered.  Time to take the next step forward.  (Insert a short period of crying, trying to take in the shock, asking why, praying for direction...just being honest) Okay, moving on. 

Deep breath. 



Be patient. 

We were ready to wait patiently for the next step, but God showed us he was ready to move now.  Thursday morning, Kris contacted a hospital which had an Adult Congenital Heart Defect Clinic.  They specialize in working with adults who were born with heart defects and, praise God, survived.  The call was made at 8:30 am and at 2:50 pm we were sitting in the doctors office.  For the first time in his adult life, my husband sat with a doctor who did not look at his medical history and tests and say, "humm...that's strange."  He sat with a doctor who listened to his symptoms and said, "that makes sense" and "I've seen this before".  Kris' numbers and symptoms didn't surprise this doctor because this was his area of expertise. It was like a breath of fresh air.  Our kids were in the room with us and at one point, after the doctor left, our son said, "I think that appointment was very helpful.  It's like the doctor actually listened to us." (He's a pretty insightful 9 year old.) 

Now, we wait for the doctor to review all the imaging Kris has had done over the past 2 months to make sure that there is nothing the doctors missed and to make sure the anatomy of his aorta will support having a stent put in.  Once those things are confirmed, we will move forward with scheduling the procedure to repair his re-coarctation. 

Our waiting isn't over and we still trust that God is going to continue to move and work in our lives.  No matter the situation, God's plan is always the best.  His strength is always perfect.  We can always put our complete trust in him. 


Celebrating a good doctors appointment!

Tuesday, February 10, 2015

Putting A Broken Heart Back Together

The Lord is near to the brokenhearted
    and saves the crushed in spirit.
Psalm 34:18 
Wearing red for our favorite heart "child"
We all have those moments that we will always remember.  I'm not talking about the national level "you know exactly where you were when X happened" moments.  I'm talking about the personal moments.  The moments that make your life pause for a second or two.  The moments that don't just blend into the next moment.  One of those moments for me was in 1997.  Kris and I had been dating for a few months and there was a group of college students hanging out at Steak-n-Shake (it was probably in the middle of the night when we should have been studying).  I don't remember what the conversation was about, but I do remember Kris saying (very casually, of course), "I had open heart surgery when I was five years old."  WHAT?  How did I not know that?  I remember my mind being flooded with questions.  What was the problem?  Was he okay now?  Was he going to have problems in the future?  Yes, I tend to be a worrier.

Fast forward eight years to another memorable moment.  I was sitting in my OB's office.  Kris and I were excited about becoming first-time parents.  This was my first visit and the nurse was asking me a slew of questions.  I felt pretty good answering "no" to the questions like do you smoke, do you drink, do you eat tuna?  I was in a rhythm when the nurse asked, "Was anyone in your immediate family born with congenital heart disease or other birth defects?"  I was about to answer "no" like all the other questions when suddenly, I flashed back to that night in Steak n Shake.  "Yes," I said.  "My husband was born with an aortic coarctation."  It had never dawned on me that this could be hereditary and that my baby could have a problem with his or her heart, too.

I admit that I was very uneducated when it came to congenital heart disease (CHD) or heart health in general when I sat in the doctors office that day.  Even though I was married to a "heart child", I didn't really know what that meant.  The facts, however, are staggering. One out of every 100 children is born with a congenital heart defect which means about 40,000 babies are born every year with CHD in the USA.  It is the #1 cause of infant deaths in the United States.  Even though technology has come a long way in the 30+ years since Kris' open heart surgery, CHD research is still very underfunded.
Kris was just a few months old when he started having problems keeping down his formula and then his lips started turning blue.  After some tests, the doctors discovered that he had an aortic coarctation.  This is when the aorta is crimped making it harder for his heart to pump blood.  At the time, infant surgery was not as common, and the doctors decided to hold off as long as possible to give Kris the best chance of survival.  Kris remembers how it felt before his surgery.  He wasn't able to run or jump and had very little energy.  His legs and feet were always tired and cold (caused by the lack of oxygen getting to his body).  When he was five years old, he had open heart surgery to open up the aorta and put a patch on it.  They also discovered that he had a bicuspid valve.  Kris' mom shared with me many years later that during his surgery, she prayed the prayer of Hannah from the Old Testament (1 Samuel 1:11). If God would save her son, she would give him back to the Lord for His service. 

I can only imagine what it was like to be Kris' mom.  There were no Facebook support groups or awareness weeks back then.  She was an amazing woman who put her faith in the greatest Supporter, Comforter, and Healer.  When I had my 20 week ultrasound with our firstborn, I remember holding my breath as the tech took all the heart measurements, counted out 1, 2, 3, 4 chambers of the heart, and made sure everything looked just right.  Thankfully, I was able let out a deep sigh of relief. 

Kris has a big heart (literally and figuratively)
This week is CHD Awareness week and we are more aware than ever that this disease can last into adulthood.  This week Kris has at least three doctors appointments for more tests and a meeting with a panel of experts who will be reviewing his case.  We are blessed beyond measure that Kris is one of the almost 1.8 million people LIVING with CHD.  Heart babies can grow up and get married and have families (and play softball and climb mountains and change the world)!  My husband is living proof of that.  We want even more of these precious babies to have the same chance. 

If you'd like more information on CHD and want to know of ways you can help, please visit my friends' sites below.