We flew home the evening of day 10--Wednesday for us, arriving also on Wednesday evening as we gained a day. The flight alone might have given me PTSD. Lilah was great and slept about 9 hours. I hate China Southern airlines and told myself I would never fly them again, but had no choice as we needed a direct flight. CS is cramped and the flight crew are rude. And I'll leave it at that.
For my friends waiting to travel, or trying to decide on medical needs, etc:
We spent yesterday at Children's Hospital, cardiac wing. Lilah had several tests. What I know for sure is that she was born without a pulmonary artery. This did not come as a surprise to me. I have known from the beginning that she is a miracle.
Lilah's medical referral report was, in fact, pretty much spot on. There was a line that mentioned a "deformed pulmonary venae" followed by a question mark--the best they could do with the equipment available to abandoned children. She has a few other things going on in there (all of which were mentioned in the report from China), and grouped together she does have tetralogy of fallot. It is complicated by the absence of the pulmonary artery and Lilah's repair won't be the kind where she has surgery now and an adjustment through cath when she is a teenager and no limitations on the things she can do. She will have at least 3 open heart surgeries during her lifetime, as the tube they will use to act as the missing artery will need to be replaced as she grows or when it narrows. The doctor was otherwise very pleased with the anatomy of her heart. He was also pleased with her oxygen saturation--it measured 81!
Remember my earlier comment about the doctors in China listening to Lilah's heart and saying that they couldn't hear a heart murmur and so she couldn't possibly have heart disease? Well, the doctor yesterday couldn't hear one either and he was very surprised. So the concern in China was a valid one--but it really threw me.
As for limitations, she won't be able to do things like gymnastics--or any activity where she could have impact on her chest. (Though the doctor says she will be able to play soccer--which seems far more dangerous to me than gymnastics...) He says she probably won't run a marathon. My response was that she probably won't want to. I think he was worried that I wasn't worried and kept saying though things look good for a stellar repair, he couldn't promise anything. I told him it was actually out of his hands completely and that whenever I feel worry creeping in, I remember the One who sent me. So far, it has been that simple for me. I have a deep sense of peace where Lilah is concerned.
Lilah is a delight. She is a happy, busy toddler who is always laughing. Two behaviors that she picked up in the orphanage--throwing toys and hitting--are already beginning to fade. (I put the toys in time out when she throws them and this has been a very successful strategy and we remind her to use gentle touches and hitting has improved by at least 80%). She is helpful, caring and compassionate--if she thinks you're not eating enough, she will tap your plate or open your water bottle for you. She is SO smart and quick to figure things out. And this is only at 12 days together. I am so blessed x 3!! Which, by the way, the girls play, laugh and love each other already. Lilah looks to her older sisters for guidance and they adore each other.
I will post pictures tomorrow.
