The Heart of Life In Griffinland

I didn't ask to be the mother of a medically complex child, nor was I expecting it in the slightest.  But I am.  So I decided to own that role and be intentional about it. I started writing to survive and process my son's extensive and traumatic hospital stays.  Now I write about my thoughts, experiences, and lessons learned in this life thus far.  I started Life In Griffinland as an outlet and way to update our family and friends on what was going on in our life and hearts, and now I'm on a mission to give others a taste of what goes on in my mind as a special needs mom, the advantage of lessons I have already learned the hard way in caring for a medically complex and fragile child, some good laughs, and a space to come and know they are not alone.

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   The Story

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On the morning of March 14th, 2021 we welcomed Griffin Zayne into our lives, officially, and we were instantly and irrevocably in love.  He was absolutely perfect.  Little did we know, though, that he would immediately go into heart failure upon his birth and the wildest, scariest, most profound ride of our life would begin.

So began our journey with Congenital Heart Disease, Williams Syndrome, and life with a medically complex child.

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Griffin's medical history is pretty extensive and complex at this point, so I find bullet points to be helpful to keep his timeline and journey straight:

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• 2 days old - Griffin had his first open-heart surgery after being life flighted to Seattle Children's Hospital.  They patched his ASD, closed his VSD, and did an end-to-end anastomosis on his aortic arch where the most severe stenosis was.  There were still issues with his pulmonary arteries and left coronary as they were stenosed as well, but not severely enough to be addressed at this time.  He had no complications and spent only 16 days in the hospital before he was discharged home.  In the midst of his first open-heart surgery and recovery, they tested Griffin for Williams Syndrome as an effort to explain the constellation of heart defects that they had found, and he tested positive.  That was a lot to absorb - in the blink of an eye the entire future before us that we thought we would have changed.  But he was still here and there were so many unknowns. 

• Unfortunately by the two week mark when we followed up with his cardiologist at home, the echo showed that Griffin's aortic arch had re-stenosed and would need another surgery.  It was at this point that we were directed to Dr. Collins at Stanford Children's who explained the complexities around repairing a WS heart, and that the prior surgery would have never worked for a child like him.  To say we were crest-fallen will always be one of the greatest understatements of my life.  

• 2 months old - The infamous Mother's Day life flight and second open-heart surgery.  On May 8th Griffin went into a major cardio/respiratory event at home requiring an emergency ride to the hospital via ambulance.  We had hoped that we would be able to tie him over long enough at our local children's hospital to get insurance to authorize us taking him to Stanford, but by the next day we were told that his heart was too fragile to wait and if we lost him here they would not have the ability to get him back and support him on a flight to Stanford for surgery.  We made the decision to life flight him to Primary Children's Hospital in Salt Lake where he underwent an almost 12 hour second open-heart surgery.  His surgeon called me half way through and explained that Griffin's heart tissue was falling apart as he was trying to repair it with donor tissue, and that his bleeding was not stopping but he would keep working as long as he could.  I will never forget that call, the fear I heard in his voice, or the despair I felt at what he was saying to me.  But Griffin, like the mighty heart warrior he is, pulled through despite the odds.  We spent the next 9 weeks in the hospital - the first 5 days on ECMO (we were literally down to the last hours he could have been on it and been able to have hope he would ever be able to come off of it and live), he had a massive pulmonary hemorrhage of his right lung on day 6 post surgery which again left us wondering if he would survive, 37 days total he was intubated and weeks of BiPap, CPAP, and high-flow after that, an urgent heart cath which required three stents to be placed in his heart when he stenosed again in his aorta and pulmonary artery, and the worst withdrawals you've ever seen after the amount of sedative drugs it took to get him through all of that.  He was then discharged home where we made it three days before he had a hypoxic event and we had to call the ambulance.  5 more weeks in our local children's hospital put him on the mend and we were finally discharged home for "good".  He was 6 months old at that time and had spent less than a month at home in his short life thus far.  

• We were then blessed with 8 glorious, wonderful, beautiful months at home of healing and growth before Griffin needed any other interventions or hospitalizations.  We had a ton of appointments and therapies and all the stress of life with feeding tubes, oxygen, medications and all that comes with - but he also grew, thrived, held strong, and we had so many wonderful times in that space.  We were even blessed to get all the holidays in the fall/winter months at home that year AND celebrated his first birthday at home (which he was NOT a fan of). 

• Over the next year there were various hospitalizations for viruses and bugs, several heart caths to check on his heart, and a surgery for his g-tube to be placed and hernias repaired; but all-in-all he remained stable and defied the odds of a life expectancy of maybe 1 year, and he gave us nothing but hope that he would keep leaving us all wondering. 

• Then, on Thanksgiving 2022 we rushed him to the hospital once again for increased work of breathing and we were told his Mitral Valve was no longer working and he would need to go for emergency surgery in Salt Lake again.  We dodged that bullet and managed to come out of it with only a  heart cath and two new stents, but were told too that we were quickly hitting a wall where there would be nothing else they could do to save him.  So, not for the first time, we reached out to Stanford and started the appeal process for him to go where needed to this time.   

• We won that battle, but not before Griffin suffered cardiac arrest and the OG Coronavirus which delayed any possible surgery.  They got him back quickly and urgently life flighted him to Lucile Packard Children's Hospital/Stanford Children's where he was stabilized.  I would love to tell you it's been smooth sailing from there, but if you've read this far you've probably figured out that that is not often how this road looks with Griffin.  He's had a second virus and suffered a massive stroke which required emergency surgery to remove as much of the bleed as possible, and because of all of this has been sitting here for almost 3 months waiting for surgery.  But he has grown in that time, gained weight, regained so much use of the right side of his body (which he lost entirely after his stroke initially), and we are finally in the window to have his surgery done.  It's going to be a long, high-risk, not great odds surgery - Griffin seems to always like it that way, and he always comes out the other side leaving us all in awe and so so much gratitude. 

So here we sit, trying to wait patiently and prayerfully, no idea where the road ahead leads or how it will look, trying to be brave like Griffin and defiantly choose joy and hope; and we want to share our journey and story with others traveling a similar road, as well as anyone who would like to come along for the ride.

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Welcome to Life in Griffinland!