To start with, you must know that without JJ there would be no Josie.
We adopted our first daughter, JJ in December of 2008.
When we adopted JJ I was lucky enough to visit her orphanage – a brand new shiny one.
It was the last room we visited, the last bed at the end of the row. There was a very quiet baby lying still under white sheets in the cold winter light coming through the windows.
This baby was so still because he was dying. We had a quick conversation with the guide and nannies – and then I understood. His birth defect would kill him shortly. I also knew that in the US his was not usually a fatal condition.
There it was. This is the difference between knowing and KNOWING. Going to China I knew that we had the advantage of better medical care. After we came home I KNEW that children suffered and died because of where they were born and no other reason.
Once JJ was home a few months we asked our agency about adopting again – and were told we no longer qualified. In August 2010 I talked to Mr M again and asked him to put it in prayer.
That week, while I was disassembling a chicken for dinner, JJ walked up to me and said:
"I have a brother" . . . . .
"I have a sister, I have a sister"
Me: 'Really, where?"
JJ "Right here, at home"
JJ "In your heart"
As a side note – in the end we evaluated the files of one boy and two girls.
All of them are in my heart.
And so we looked again. One day I noticed the picture of a little girl on our original agencies waiting child page. She had just turned two. She had a serious unrepaired heart condition requiring surgery.
I didn't have much hope, but I decided they wouldn't shoot me for asking, so ask I did. And lo and behold, the agency now felt they could help.
I looked at her file, and the first thought in my head was "oh my - this girl needs a Mama".
I showed my husband the file (no photos for him until we accepted). His first thought was this was a child who deserved a chance – and we would try to give it to her.
Josie was diagnosed with DORV (double outlet right ventricle) and VSD (hole between the bottom chambers of the heart) . There was an indication of high blood pressure in the lungs (pulmonary hypertension), but the US doctors felt strongly her lungs were protected by a pulmonary stenosis – a narrowing of the artery to the lungs.
All her growth charts and other results showed she was growing and doing very well, although she had a language delay. It should be one surgery and then monitoring for her.
So we did the paperwork . During my prayers God told me her lungs were not OK. But I also had God’s assurance that Josie would be OK in the end.
When it came time to bring her home Josie was just over 3. She looked good!
We bonded in China and found Josie was a really nice little girl – and a very smart one at that.
Then we came home to meet up with Dad and Big sister. Two days later we went to see the Cardiologist and found out that China’s diagnosis was correct, but not complete. Josie also had transposition of the great arteries (TGA) and Interrupted Aortic Arch – and this meant her lungs had been badly affected. A cardiac cath confirmed the worst – her lung pressures were too high for her heart to be repaired.
The plan was to medicate and see if the lung pressure could be improved enough for a heart repair. So we did. And we started to pull together our new normal.
At the end of June we did a second cath. Her lung pressures improved a bit. But not enough. Our Children’s hospital deemed operating on her would be too risky. The plan was to medicate and hope she grew enough to survive a heart /lung transplant when it became necessary.
Inoperable is a scary word.
So with the advice and support of her cardiologist we got second opinions from major heart centers.
Eventually we got an “interim” plan that would not correct her major heart defects, but would take the stress off the lungs. Hopefully this would allow Josie to heal enough for the heart repair some day. So we scheduled a surgery on November 29, 2012 at Stanford/LPCH.
We made our plans and prayed. And on Thanksgiving, November 25, we got an e-mail that changed everything. The surgeon and cardiologist at LPCH were reviewing Josie’s records in preparation for surgery. And they came to the conclusion that they could do a full heart repair for her. In fact it would be less risky overall than the partial repair plan.
So we made a quick plan change, and I arranged for more time off work.
On November 29 Josie had a full heart repair. The surgeon found two other heart defects and fixed them while he was at it.
Recovery was rough because of Josie’s lungs. I won’t lie. Her heart stopped twice, and she had an episode of what is called “PH crisis”. She turned out to be sensitive to medication changes, so everything that needed to happen to get her up and home had to be done SLOWLY.
Despite all that – we drove home on December 17th and got to the business of finding yet another new normal.
We still have a way to go with the damaged lungs. That is likely something we deal with for another year or two.
But Josie – she feels good. We see her energy level improve every day.
And Josie must be one of the nicest and sweetest kids in this world.
And Josie now has a chance. She deserves that.
Was it easy? No. Was it worth it? Even if the outcome had been different SHE is worth it.
Our Josie is one in a million.
But here is the thing. She is also one of millions born needing help.