The Diagnosis

Per her limited Chinese translated to English medical records, "Most parts of the heart locate in the right chest, the apex cordis points to the right side. The location of atrium is correct with one set of AV valves, single ventricle and the small residual chamber locates at the left front position.  The AO and PA both originate from major chamber. The AO is not widened, which locates in front to right side.  It is PAS which locates at back to mild left side.  The foramen premium of IAS is absent. It is the aortic arch in left position. "  In summary, she has dextrocardia (her heart is on the right not the left), as single ventricle (supposed to have 2)  with both main arteries ( the aorta and pulmonary artery) arising from the one and only ventricle. She also has an ASD (a hole between the top chambers of her heart) and pulmonary artery stenosis (or narrowing).  Summarizing things even more, for our medical friends, she likely has heterotaxy syndrome with double outlet right ventricle.  We don't know if she has situs inversus of her abdominal organs but she reportedly has recovered well from the typical childhood colds so we hope that she has at least one functioning spleen. 
Thankfully, since I work at the Children's Hospital of Wisconsin, which has one of the top 10 pediatric cardiac centers in the nation, I sent her file to my cardiac specialist friends and asked their honest opinions on what Emma will need surgically and how she would do post-operatively and long term.  Can I just say how wonderfully supportive everyone was? They were genuinely bending over backwards to develop the best plan they could for her care.  We will forever be thankful...
We were told that there was good news and bad news.  The good news first was that yes, she would need surgery, actually 2, to repair her heart and that most kids with similar heart defects do well.  They have a normal neurological future and developmentally are just like their peers.  :)  The bad news was pretty bad though.  Usually the surgeries are done by 12 -18 months of age.  If the surgeries are delayed, the risk for pulmonary hypertension (irreversible lung damage) is too high.  Emma was already 21 months old.  She likely has already developed some degree of pulmonary hypertension.  If we don't get her home soon and her pulmonary hypertension worsens, she would not be a candidate for surgery at all, her condition would be untreatable and she would only be offered palliative care.  Her life span would only be to 5-15 years of age.  Our hearts sank and the tears flowed.  How could this be? We were back on that roller coaster again.  We had finally gotten a chance to see her file after thinking we had lost her once already.  We finally had a chance to make her our very own but now we were at risk of losing her again - this time for real.  Now we knew why all the other families ahead of us on her waiting list turned her down.  But for some reason, the thought of declining her file never entered our mind.  Like all parents who are given bad news about the health of their children, we were devastated, scared and wished we could take her pain away.  But we never thought of leaving her.  She was ours.  She was already part of our family.  She already belonged to us and we to her.  We were going to get through this together, as a family - for better or for worse.  She needed us more now than ever and to be honest, we needed her just as much.  We told Madelyn and Luke about Emma's heart condition because we felt it was important to include them in the entire adoption process.  M and L were worried for Em but they wanted to bring her home, too.  I was so proud of my brave little ones.  So we submitted our Letter of Intent (LOI) to our agency and they sent it to China Center of Adoption Affairs in Beijing and we received our preapproval (PA) on July 6, 2011.  She was now formally reserved for us and we could now officially call her "Emma" which is the name that we all unanimously agreed on - amazing!  But now our paper chase to complete all the required documents was on.  Knowing that we were racing against time brought out the Mama Bear in me.  It was not pretty but it definitely brought me to my knees.  Thankfully, He is always in control...