Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon


The way is not in the sky. The way is in the heart.

-Buddha



Tuesday, February 12, 2013

Day 12: Meet Cam and Jon


 Day 12:  Meet Cam and Jon...two amazing warriors with amazing stories.  Cam and his family were also at CHOP at the same time as we were...get inspired by their stories!





 MEET CAM!!!

There are many ways to tell the story of our little son.  This time, we chose to tell it through the expressions of others during important parts of Cam’s life.
“This is going to be the biggest thing that has ever happened to you.  It’s going to change your lives completely.”  
Our high risk OB said these words at the end of an exhausting day begun with a routine ultrasound, moved to a high risk ultrasound, and ending with a visit from a pediatric cardiologist who diagnosed our son with a heart condition called “Hypoplastic Left Heart Syndrome.”  We tried to transition from excitement for our long-awaited second child to sober understanding of what was wrong.  The next few days were hard; there were so many who had prayed that God would bless us with another baby, and so many that would be hurt and confused by the news that not all was well.  Phone calls to our family were heart-rending; I could hear them pulling up videos and pictures on the computer while talking with us, trying desperately to understand HLHS.  There were many tears, much strengthening of faith, and even more fighting of despair.  We chose a family name for our son, Thomas Campbell, because Thomas- the disciple who needed visible proof of God’s power (“Until I see the wounds, I will not believe.”)- would be the pattern for our story, while Campbell- from our Scottish roots- reminded us that we come from a family that has fighting tenacity.  “Baby Cam” soon became as real a family member as if he were born already.
“You need to go to CHOP.”
Cam’s pre-natal diagnosis continued to worsen.  Cam had a “restricted atrial septum” that was closing rapidly.  In short, his lungs were not going to develop well, and his chances of survival of the three necessary surgeries were decreasing.  Dr. A simply looked at us and spoke these words.  Luke and I believe that choosing to go to CHOP was the best decision for Cam’s health that we have made, even though it was 9 hours from home and ended up with us living apart for months at a time.  Thankfully, my parents only lived 30 minutes from CHOP, so we had a second home base and built-in babysitters for our daughter Maggie.
“He’s got red hair, Evelyn!  He’s going to make it!”
Because of Cam’s condition, he was delivered by C-section in the SDU at CHOP and immediately taken to the cath. lab.  The anesthesiologist (Dr. M) who held Cam after delivery said these words- words of hope that I clung too, since I couldn’t cling to my baby, for the many dark hours coming ahead.
“He needs a stern talking to, but I’m telling you, he’s living up to his hair.”
Dr. M again, somewhat shakily spoken, after Cam’s cardiac arrest less than 24 hours later.  Cam returned to us thanks to an amazing intensivist and nursing staff (Luke calls them CHOP’s “Seal Team Six”).  He suffered some serious lung and brain damage, and ended up going through an alternative approach for his first surgery (“the Hybrid”) because he wouldn’t have survived the traditional “Norwood.”  
“You won’t believe what these kids can recover from.”
Dr. W’s words, as he hovered near Cam’s bed for the week.  We watched in disbelief as Cam slowly healed from damage to his brain, lungs, kidneys, intestines, and circulatory system.  We were encouraged by so many visitors- some friends even all the way from Charlotte.  We were discharged locally after a couple months at CHOP, and eventually even able to return home!
“I don’t know who you have praying for this little guy, but whatever you’re doing, don’t stop.  It’s working.”
Another ICU doctor’s words after an intense second go-round at CHOP.  Cam was life-flighted back for his long and intensive second surgery, the Comprehensive Stage II.  His recovery did not go well, due mainly to a fully clotted left lung from the main to branch arteries.  The details are complicated, but eventually a stent in his left pulmonary artery with some high-risk catheterizations allowed Cam to wean off the ventilator.  He still was so desperately sick, Luke was commuting for long weekends, and our family felt fractured through our sorrow for our struggling baby.  Those months seemed long indeed, but we were thankful to avoid a tracheotomy and return home with our “portable mini-ICU.”  
“We do not lose heart… We have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed;  always carrying in the body the death of Jesus, so that the life of Jesus may also be manifested in our bodies… For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison.”
The words of 2 Corinthians have been our constant support throughout our journey.  Despite a broken heart, a severe stroke, damaged lungs, a paralyzed vocal chord, and more, Cam’s body is working, and we are all healing together.  He is slowly learning to crawl, talk, and eat.  His silent belly laugh delights our hearts.  He is so excited about each day- always wanting to explore and snuggle.  At 20 months, he still has a long way to go, his third surgery date is uncertain and complex, but we have seen him fight and conquer.  We are so proud of our beautiful heart warrior!














MEET JON!!!







Our miracle baby was born 11/21/11 at 9:55pm, 6 lbs 9 oz. 20.5 inches - with Hypoplastic Left Heart Syndrome and a few other minor issues related to this condition. Basically he has half a heart. He has already had 3 open heart surgeries all before he was 4 months!  Jon's daddy, Shane is in the Army stationed at Fort Sill, Ok. We have two girls as well. Trinity, 11 years old and Destiny, 26 months old.

We found out about his condition at our 20 week ultrasound. The scariest news I've ever gotten in my life. Though we were blessed to find this out before he was born. Our facility would not have been equipped to give Jon the care he needed right after birth. 

We temporarily relocated to Dallas, Tx. Jon received treatment at Children's Medical Center Dallas. Most of the time I stayed in Dallas with Jon and Destiny. Shane maintained the home front in Oklahoma as he had to return to work and keep Trinity active in school. Shane tried to visit every weekend. This was our life for nearly 4 months. Jon's fragile stage between his second and third surgery required us to be close to the hospital. Once he received his third surgery, the Glenn we had a two week check up and our little man proved to be quite the warrior! He was doing great and we were given the ok to go home! 

Though I was a bundle if nerves having Jon home for the first time and being far from his hospital we adjusted well to our new normal. Jon is 14 months old now and doing awesome. He continues check ups in Dallas every 4 months. He will need at least one more surgery at 3-4 years of age and possible a heart transplant later on his life. 

I believe the hardest part of this journey is the unknown. I remind myself daily to enjoy each moment we have with our miracle boy. As we have become close to many in the heart baby community life is bittersweet. We face the harsh reality of being a heart mom as fellow heart babies struggle in their battle, and some sadly lose it. We also rejoice in the triumphs of fellow heart warriors thriving in their journey.  With the love and support of new and old friends and family we move forward with a bright future for our son in sight. It has been a long road already, but God has blessed us and Jon is doing awesome! 

Please visit Jon's Blog and Page where you can read his full journey and receive updates:
www.facebook.com/heartwarriorjon 



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