Open Heart Surgery this Tuesday

I can't believe it! Tuesday, Jiliang has her open-heart surgery. I am so scared and yet, I know that this is her best chance for a normal life - if that is possible. I am not sure what time it will be, because everything is happening so fast, so I will not find out the exact surgery time until Monday. As soon as I know, I will let you all know, so that you can keep her in your prayers.
Dr. Ohye is doing the surgery. He is the surgeon that I picked one night to review her file. I emailed him and he got back to me within hours, offering to review her file at no charge. Somehow I knew that we would meet again.
I had originally planned to have her heart repaired for Tetralogy of Fallot by the time I was supposed to return to work: April 26th. Due to the misdiagnosis of her heart condition, based on the limited information in her medical file from China, we had to undergo various procedures to learn what her condition and options were. Only a mere week ago, we were dealing with the fact that our daughter was most likely inoperable. Wednesday, we discovered that she was an open heart surgery candidate, and today we scheduled her surgery for Tuesday, April 20th.
Let's just say that things didn't exactly operate on my timetable. However, things always have a way of working out. I told the cardiology department today that I was scheduled to return to work on April 26th, so her surgery would have to be next week, which I believed was close to impossible. This would allow me to extend my FMLA from the current 9 weeks, to a total of 12 weeks, returning to work on May 17th. Otherwise, we would have to wait until mid-June, which her cardiologist felt could be detrimental to her lungs. Behold, they had one opening next week: Tuesday, April 20th!

I am so scared for my baby. She has been through so much trauma and I really hope that this will make her quality of life richer and longer. When we were at the Pediatrician's office today getting her second round of immunizations, she was so scared. Who wouldn't be, for that?
We had a translator, even though I didn't request one. She was wonderful!! Her name was Jialin (I think I mispelled it, but it was so similar to my girl's name). She noted how sharp and observant that Jiliang was. She also noted her separation anxiety, and the felt the burden of emotional pain and physical trauma that no child should have to carry.
The translator was able to tell Jiliang many things that I have been wanting to tell her. When she told her in Mandarin, "Your Mama is never going to leave you. She is going to stay with you forever." Jiliang started to cry, hugged me tightly, and tears fell down her face. It almost brought the translator to tears.
She was also able to tell Jiliang:
. Your mom is bringing you to the doctor's so that she can fix your heart and your head. She is going to keep you safe.
. Your mom is sorry that you have to get shots. You get shots so that you won't get sick.
. Your mom showed you pictures of your orphanage, your nanny (prounced I-eee), and your best friend named Gao Ji Fang; because they want to say hello to you; and they want you to be happy with your new family.
. She also told her that her best friend is getting a new mom and dad too.

Jiliang did not acknowledge or respond to any of her words, but it was obvious that she heard her and understood. That is typical of my girl, especially in a clinical setting, when she fears that someone will take her from her Mama.

While we were there, I was able to see the CTs of her skull. The pediatrician had never see anything so bad. It makes me realize that my little girl beats the odds as an infant. As a baby, she only had a 20% chance of surviving her heart defect. Add a skull defect, a burn, and we can go on and on. She is alive and thriving today, and happy in her new family. To me, she is a Miracle.
Each and every day with Jiliang is a gift, and every day she teaches me more about perseverance, strength, joy and unconditional love. Please keep Jiliang in your prayers for a successful surgery and recovery, so that she may finally have her fairytale ending and endless love of a real family. She is so precious to us, as she blesses our lives each day by her mere presence.

Thanks!
Jill