Wednesday, February 12, 2014

Day 12 - Rini Olson


One year ago today, I was sitting in a waiting room at our children’s hospital while our daughter, Scarlett, underwent a sedated echocardiogram two months after her Glenn procedure.  She and her older brothers, Tristan and Bryce, were adopted from China and they, too, were born with congenital heart disease (you can read Tristan, Bryce, and Scarlett’s story here).  We had happily settled into life with our five children and once again, we felt our family was complete. But God had other plans for us! On that day, February 12, 2013, as I sat waiting I received a phone call from the Director of Holt International’s China program.  I had been working with her as an advocate for some time, and Holt had a child with complex, single ventricle CHD who had not yet found a family.  They had named her “Lainey”, and she asked if I would be interested in advocating for her? Absolutely!  (You can see “Lainey” as she appeared a year ago on the sidebar of this blog).


Two months later, despite over four dozen inquiries and file reviews, no family had stepped forth for her.  In the meantime, with the help of Little Hearts Medical Team, we had arranged for her to be transferred to Peace House in Beijing and to be evaluated by a Little Hearts cardiologist who would be traveling to Beijing in late April.  We hoped that this precious little child would be the recipient of a heart catheterization as the first step towards arranging for cardiac intervention while still in China, which we hoped would help her to find a family.  But five days prior to her appointment in Beijing, her orphanage withdrew their consent and would not permit her to travel to Beijing.  “Nothing you do will help this child. There is nothing that can be done for her,” were the words of the provincial cardiologist, and updates showed that her health was in decline.

I was distraught.  I was confused and at a loss as to why we had not been able to find a family for her.  My husband had to remind me that we, too, were once frightened of major medical needs and all of the unknowns.  Back in the day, we were looking for guarantees…guarantees of a smooth path and looking for insurance against heartbreak.  I had spent so many years avoiding risk, and it was our CHD children who taught us that in avoiding risk, we had also missed out on some of the greatest joys of our lives.  Embracing the unknown had not turned out to be scary.  Conversely, it had been liberating! 

As I was grieving for this child that I had grown attached to over the months of advocating for her, clear as the Spring day outside, these words popped into my head: Why not you? What possible reason do you have not to adopt this child?  The only reasons were the worldly and mundane ones:  Six kids?! More diapers?!  Where will the funds come from?!  Four children with ongoing medical needs?!  How would we manage?  Those were the same concerns that my husband and I had with each previous adoption and after each child came home, those reasons seemed pretty insignificant to us.  We always managed, we always figured it out.  By following God’s prompting, we had built a family beyond our wildest dreams! I firmly believe God spoke to me that day, nudging me forward, making me uncomfortable, forcing me to confront my excuses.  I knew there would be no peace unless I followed.  I also knew that it would be difficult and messy, but glorious and joyful at the same time.

So I told my husband my thoughts, the same man who had declared “Not even a hangnail!” the first time I had broached the topic of a medical needs adoption nearly nine years earlier.  He asked, “What do you want to do?”  I replied, “I want to adopt her.”  And my dear husband simply said, “Okay!”  It turns out that he had been waiting for me to tell him that I believed that we should adopt her, and he (along with many of our friends), knew we would end up adopting this little girl.  He told me later that he realized that I needed to figure that out for myself.

We officially applied to Holt International and submitted our LOI for “Lainey” on April 24, 2013.  On August 1, we received our Travel Approval.  We booked our tickets and were scheduled to arrive in China on August 15 and adopt our newest child on August 19.  But three days after we received TA, Holt called with the news that our daughter-to-be, who we would be naming Rini Ann Yongling, had spent most of June and July in the PICU at a Chinese hospital.  She was in severe heart failure, along with having pneumonia, kidney, and liver dysfunction.  The orphanage wanted to know whether we still wanted to adopt her.  Of course we did!  But it turned out that over the next couple of days, the orphanage along with the China Center for Child Welfare and Adoption, did not feel that Rini was adoptable any longer.  “She is dying,” we were told, and the CCCWA revoked the adoption.  Our agency fought back, and after Rini was discharged and taken back to her orphanage, the adoption was reinstated.  There were so many conversations over the next days leading up to our departure, so many people helping us to be able to bring her home.  We prepared before/after photo albums of our other CHD children, our cardiologists and surgeons wrote letters on our behalf, and we prepared for what might arise when we got to China.  On the day before our departure, Rini was at the orphanage, the adoption was on, and the next morning we got on our flight.  But as we were 37,000 feet above the Earth, Rini was readmitted to the PICU.

Our agency was not informed of this until the morning that we were scheduled to meet and adopt her.  We received the call as my husband and I, along with two of our children that were with us, were excitedly getting ready in our hotel room.  We were told she was back in the PICU, and told we could come to see her.  We learned later that the expectation was that we would decide not to proceed with her adoption once we saw for ourselves how sick she was, and apparently a “replacement child” had already been selected for us.  We arrived at the hospital and they brought Rini in.  I will admit, we were scared.  We were terrified that she would die in our care before we could get her home. But we came for her, and she was to be our daughter.  We wanted her, come what may.  And really, what other choice was there?  Leave her there and live the rest of our lives knowing she died there? No. If she was going to die, she would die with a mother, father, brothers, sisters, grandparents, aunts, uncles, and friends.  As a friend once told me in regard to her own choice to adopt critically ill children, “Doesn’t everyone deserve to be grieved?”  We held her and looked at everyone in the room and told them that nothing had changed.  We came for her, and her only. I could feel God’s strength and his warmth surrounding me as I held her tiny, sickly body. Frightened as I was, there was also peace.


That night, we received a call from our agency that the Civil Affairs Bureau had blocked her adoption.  We could not have her.  For the next three days, our agency moved mountains, and on August 21st, we were finally permitted to adopt our daughter.  We went to her orphanage where she had been brought from the hospital, and there were plenty of tears and photos taken by the orphanage staff as her adoption was completed.  Later that morning at the Civil Affairs Bureau, the Director at last put his chop to her papers and she was officially our daughter.


One week later, we were on a flight home with a severely malnourished 22 month old in end stage cardiac disease, who could neither swallow nor suck. We kept her hydrated as best we could with a 5mL syringe that we used to drip fluid under her tongue.  We landed, got into our car, and my husband pulled up to the Emergency Department of our children’s hospital.  I got out with Rini, grabbed our suitcase, and walked through the doors where our cardiology team was waiting for us.


During the next two weeks in the PICU, we learned that Rini’s heart disease was more complicated than originally thought.  While we had hoped that after re-feeding she would be a candidate for a BT shunt, Glenn, and Fontan, it was discovered that she would need multiple surgeries before getting to the point of a shunt.  But because of how damaged her heart muscle already was and the severe dysfunction of all of her valves, she had been rendered inoperable.  Her left lung was extremely hypoplastic and crushed under her massively enlarged heart, and her right lung was damaged. A heart transplant, or possibly heart/lungs, would be her only option. After much consideration, we decided to take Rini home.  We wanted to give her the love and comfort of our entire family while deciding how to proceed.

Nine days later, Rini went into respiratory failure and was readmitted to the hospital.  Our team consulted with transplant centers, and none would agree to evaluate her due to her level of malnourishment.  They also went on to say that if she did survive long enough for her nutritional level to improve to where evaluation was an option, her anatomy might preclude her from cardiac transplant. For the next few weeks, we worked with our hospital’s palliative care and hospice team as we prepared to bring Rini home to die while simultaneously hoping that another option would present itself.  It was a heartbreaking time, but also a life-affirming one.  We enjoyed each and every day with her, and through it all, we were steadfast in our belief that we were right where we were supposed to be with our treasured daughter.


On October 16, the heart failure and transplant teams at Seattle Children’s Hospital agreed to evaluate Rini for cardiac transplant and that afternoon, Rini and I were transported from Portland, Oregon via Life Flight.  The next week was emotionally taxing as she was evaluated.  The team explained that she was a 50/50 candidate, that she was “high risk” and that because of the critical shortage of donor hearts, they might very well deem her to be too big of a threat to a precious donor heart.
          
Meanwhile, her heart failure worsened, her kidneys began failing, and her liver function was declining.  A week after she arrived in Seattle, she was on the precipice of cardiac arrest and she was intubated. We knew that unless she received a new heart, that would be the last day we saw her eyes open or heard her voice.   That night, we were notified that the team had decided to allow her to be listed for transplant, and two days later, she was officially listed with UNOS at Status 1A, the most critical status.  Eight days later, Rini suffered her first cardiac arrest.  Her heart function was able to be brought back, but weakly.  Another arrest was not an “if”, but a “when”.  That “when” came less than 48 hours later, when I woke to the sounds of her alarms going off and two dozen people flooding into her room.  Less than half an hour later, Rini was on ECMO life support.  The national average wait for a pediatric heart at 1A was 3-5 months, and a child cannot be on ECMO for more than a few weeks.  We knew the odds were against Rini receiving a heart in time. Over the next week, we watched as she formed clot after clot, and her barely functioning heart began experiencing severe arrhythmias.  On Monday, November 11, a large clot was discovered in her right superior vena cava.  We were devastated.
 
Those were the hardest days, as we waited for Rini to die while at the same time trying to hold onto the hope that she would have a chance at a longer life here with us.  But it is an extremely emotionally complex position to be in when your child’s life depends on another family’s child’s death. I prayed a lot and pondered much. 

And then in the early afternoon of Tuesday, November 12, a transplant surgeon came into Rini’s room and told me that there was a donor heart available for Rini.  The heart was a good match except for one important thing: it was located very far away, and the ischemic time of the donor heart would be significantly outside of the range that transplant centers usually accept.  The longer the donor heart is outside of the donor’s body, the higher the morbidity and mortality of the recipient.  We chose to accept the heart. And on that same day, somewhere far away, a grieving family had made a choice that would give our daughter a chance at life.


Ten hours later, my husband and I watched from a window as the ambulance carrying Rini’s hero’s heart arrived at the hospital.  Her surgery lasted twelve hours, and she came out of the operating room on ECMO as the donor heart was not functioning.  But it began beating, and several days later she was removed from ECMO.  We were told later by one of her nurses that her little heart had kept beating all the way to the operating room, and as they transitioned her from ECMO to cardio-pulmonary bypass and her chest was opened, they saw that her birth heart was completely still.  Her heart had made it all the way, as long as it possibly could, and its timing was perfect.


Rini’s hugely diseased heart (left) and her new heart (right) inside of her chest.

Her recovery has been difficult, and included another cardiac arrest, two more intubation/extubation cycles, and experienced a grade 2 rejection of the donor heart.  She spent almost three months in the CICU after transplant, and was finally discharged from the hospital on February 5th.  Unfortunately, she was readmitted on the 7th and as of this writing, she is asleep in her hospital crib. The results of her second biopsy were negative, so now we are waiting to see what has caused this latest decline in her health.

My husband says that our CHD children saved him, and I feel the same way about their impact on my life.  Life with six children is busier, but I am more relaxed and at peace.  I used to be easily upset, but now it takes a great deal to rattle me.  I feel grateful for every breath, for the sun, rain, and the sound of the leaves rattling in a breeze. I am forever indebted to our children for liberating me from the little worries in life.  Their struggles have changed the way I see everything in this world.  And through Rini, once again it has been reiterated to me that the best, most fulfilling path is often the one that looks unkempt, rocky, twisting and turning, and laborious.  We wouldn’t have it any other way.









3 comments:

Linda Kramer said...

I loved reading the whole story all over again. It is an amazing testament to a family's dedication and love and God's hand directing and guiding each step of her precious life. Prayers for Rini and the entire Olson family!

asian~treasures said...

I love that Rini's story is being shared...love that from the moment her family found her, she was loved. Her medical condition, while a factor, wasn't a deal breaker.
Rini's journey to her forever family has captured me.... My faith has grown & I know it's true for others who have followed the journey of faith this family has for those precious children with failing hearts.
Our continued love & prayers!!!

Lori said...

What a beautiful miracle Rini is and what a joy to follow along! I will never forget the day Rini got her new heart... I woke up in China on Abby's Gotcha Day and sat at my computer sobbing with gratefulness that her second chance had come! Everyone ran into the room to find out what was going on... I could hardly speak for the tears of joy! Now look at her! One miracle after another! I pray that my Rachel will have her second chance too, but like you, I trust God's perfect plan and wouldn't change it for the world! My husband and I agree.... Rachel has rocked our world and changed it for the better! Oh, what we would have missed if we had allowed fear to stand in the way of the beautiful miracles God had in store! May He bless Rini with many, many miracles in the days ahead!

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