Update on Jiliang - Good News or Bad News?

I was able to follow Jiliang with the anesthesiologists to get her prepped for the procedures. As I stated previously, I think it would be easier to avoid the translator next time. Jiliang was so scared, and was a little overwhelmed with two of us talking at her. Only one parent was permitted to go, so it was a little odd having myself and the translator there.
The anesthesiologists towed Jiliang to the anesthesiology area in a wagon. I was able to hold her hand. They put the mask on her to put her out and boy did she fight going to sleep. She is so strong-willed. She cried. It was harder to see than I expected, but I didn't let on how sad it made me feel. They said that it often took longer to put out Tetralogy of Fallot children out. I had to leave when they got ready to intubate her. I gave her a kiss, knowing that she was already out by then.
The wait seemed endless. It took around 90 minutes to the the MRI and then they prepped her and sent her on to have the Catscan which was another 30 minutes. She remained intubated and anesthetized the entire time. Overall, we waited almost 4 hours, which seemed like forever. That was the first time that I have ever been away from her since I met her! I had separation anxiety too.
Once she woke up in recovery, they called us. When we arrived, she was so scared. She woke up without Mama or "Dad". She was crying a sad, low, and very hoarse cry. I scooped her up right away and rocked her. The nurse with her was really sweet. She told me that she tried to sing to Jiliang, but my girl ignored her singing attempts; she tried blowing bubbles for her - no luck; and she even tried to give her a popsicle (Bomb Pop) and water, to no avail. Her Oxygen sats were in the high 80s and they should have been around 92-95, at least.
Shortly after I took her in my arms, she calmed down, ate two Bomb Pops, drank water, and her Oxygen Saturations rose quickly to where they needed to be. Just when you feel like you have no control over anything, you suddenly feel victorious when you succeed in nurturing a child to a secure state.
The cardiologist came to see us. In my heart, I felt he was going to say that he found the left pulmonary artery, but found another obstacle. Sure enough, he said that they had some good news and some bad news. They found the left pulmonary artery. Hooray! It is narrow, but the narrowness actually served to protect the left lung from high blood pressures. Then came the bad news: The heart itself has developed a left to right shunt which could have potentially compromised the right lung and altered the pressures in the heart. That could interfere a surgical repair.
We discovered that she does NOT have Tetralogy of Fallot! She does have a large VSD, and she has a severe, complicated, uncommon heart anatomy, as her cardiologist had presumed. Every indication in her medical history pointed to Tetralogy of Fallot, which has reputable repair success. Had her heart been repaired in her infancy, the procedure could have spared us this news and a risky, open-heart procedure. Most children with her heart defect have it repaired right after birth. There is a chance that her heart has undergone irreparable damage. That startling news is not good.
Before we decide the prognosis - worst or best-case scenario - we need to undergo a catherization of her heart to determine whether or not heart can sustain a surgery. On Friday, we are doing the catherization. Scott and I are looking forward to having some concrete answers about her prognosis and treatment options.
I still believe that they could go in and find the best-case scenario. The heart is an amazing thing. Our hearts can accomodate our most vital needs, but in doing so, they can also change their directional flow, their pressures, and reconstitute their plumbing in the process.
Jiliang has made a remarkable improvement in her health in the last two weeks. The nurse in recovery stated that children with her particular condition do not usually look as healthy as her. They are usually much smaller and weaker. That is what I am clinging to. I have hope. I believe that they are going to find a Medical Miracle when they do the catheterization on Friday. She is doing things that are unexplainable. I can only hope that her heart has made the accomodations necessary for her survival in a way that is NOT irreversible to the pressures in her heart, AND has not compromised either of her lungs, resulting in permanent pulmonary hypertension. If the best-case scenario miraculously exists, she can undergo a repair that will provide her with a long, quality life.
I hesitate to give more exactness about her heart anatomy at this time, but will share more when we have more definitive answers. At this time, I am honestly a little overwhelmed. I am doing well, but it is a lot to absorb. I am focusing on one day at a time, and trying to spend all of my free time bonding and enjoying my children.
Last night, I made the mistake of looking at the worst-case scenarios online. It is amazing how negative thoughts can diminish your levels of hope. Statistically speaking, my daughter should not be here today. She is a walking miracle.
Another adoptive mother of a Heart children lifted me up recently, and pointed out how amazing it is to have a child with such a strong will to live. She added that Jiliang was abandoned at birth and survived a traumatic injury that is still a mystery; she grew up in an orphanage where she lived over 3 years without intervention for a severe heart defect, and without the love of a Mama, Dad or Big Brother to nuture her in the familial sense. Despite all of this, she took a leap of faith in trusting me - once a stranger called "Mama" - and flew half way around the world to a place called "Home". She has come this far, and she has a strong will to live, not only in the mortal sense, but in a spirited, hopeful, joyful, embracing-life sort of way. I would not be doing justice to my child's spirit if I didn't have a hopeful heart and be willing to fight the good fight right along side her. Therefore, I have to believe that God will give her a Miracle. I refuse to give up hope.
Please keep her in your thoughts and prayers on Friday as we hope to unravel the mysteries of our little girl's heart. Thanks again for all of your thoughts, prayers and loving support. I may not always be able to answer back, but trust that I read all of your comments and emails and I feel your prayers working in our lives daily.
With Love,
Jill :)