Saturday, February 14, 2015

Day 14 - Rini, Bryce, Scarlett & Tristan Olson

Last year, I composed my post for this blog from the Cardiac ICU of Seattle Children’s Hospital where our youngest daughter, Rini, was recovering from her heart transplant after being adopted at end stage cardiac disease five months earlier  (2014 28 Days of Heart post).  One month later, almost six months to the day that we adopted her in China, my husband carried her through the door of our home!

            The next five months were challenging, with several re-hospitalizations and an around-the-clock medication regimen that had our heads spinning.  But little by little, she gained strength and we saw her vibrant spirit begin to emerge!

            By the end of the summer, she was beginning to walk, talk, play, and enjoy the life that we had hoped so much would be hers through the gift of organ donation.

Her 27 medications have fallen away to just five, her blood draws have gone from once or twice per week to once per month, and her twice weekly transplant clinic appointments now occur once every other month.  Her latest heart biopsy showed a heart continuing to improve in its function, with no discernible rejection.

Rini is doing beautifully, beyond anything we had imagined!  We are so grateful for God’s blessings and the strength He bestowed upon our family during what was a tumultuous, yet miraculous year.  As we enjoy these days, months, and hopefully years of stability and good health for our daughter, Rini’s donor and his/her family are never far from our minds.  Our daughter has the heart of an angel beating inside of her.

            Tristan and Bryce are both doing well, with Tristan’s Pulmonary Hypertension well managed and his tricuspid regurgitation holding steady.  Post-Nikaidoh, Bryce’s heart is showing a few minor yet expected issues, which will continue to be monitored.  We are hoping that both boys will not need their valve repairs/replacements for another decade or so. They are good friends and partners in crime, and add so much to our lives!

            Scarlett began a decline early in the summer, with her 02 saturation falling from the mid-80s to the mid-70s at rest and mid-50s upon exertion.  We were concerned when the two hospitals that conferenced on her case disagreed on her eligibility for the Fontan.  For a third opinion, we reached out to Children’s Hospital of Boston, and I will be flying there with Scarlett on February 17th for imaging and an intervention via heart catheterization which will be the determining factor in her Fontan eligibility.  If she is believed to be a candidate, her surgery will take place on February 23rd. We want so much for her to benefit from the Fontan and have many years of happiness in front of her.  We pray for wisdom, strength, and fortitude as we enter this next phase with her.

            Scarlett received a diagnosis of mild to moderate mental impairment after two years of various therapies, genetic testing, and more recently, extensive testing through a Neuro-Developmental and Developmental Pediatric team. In the absence of any birth parent history, which might explain her delays, and the fact that genetic testing came back negative, the consensus is that she suffered neurological damage from chronic, severe hypoxia (she came home at 26 months of age with 02 saturations ranging from the mid-20s to mid-50s) coupled with malnutrition/malabsorption.  Her diagnosis was bittersweet.  The bitter stems from our sadness that she suffered, that she was hurt by the lack of access to early medical intervention.  But it certainly does not stem from any feelings that she is less than perfect exactly as she is! It is a fine and complicated line.  Of course we would never wish for our child to be injured.  But we also do not wish for her to be anything other than she is right now…beautiful in spirit, tenderhearted, full of joy, and possessing the ability to make those who come in contact with her fall head over heels in love. That is the sweetness.
This uncertainty, this foggy path in front of us, we are becoming accustomed to navigating it.  Focusing on one step at a time, one decision at a time, prayerfully, thoughtfully, and always with gratitude for what we have right now in this moment….that is one of the greatest gifts from God that we have been given as we’ve traveled this road.

As I reflect on the past year, I am brought to tears by God’s grace.  I am so grateful to be mother to my children, to be someone who gets to walk with them through their joys and trials, and to have a front row seat to the fortitude and courage of my own, and all, the heart warriors. 

Andrea Olson serves as Executive Director of Little Hearts Medical, an organization dedicated to serving impoverished and orphaned children in China born with congenital heart disease through the sharing of knowledge between U.S. and Chinese cardiologists and surgeons.


LisaE. said...

Love your story and hearing more about Scarlett!!!! Praying for you on the next steps in her journey.

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