We're going to take a drive up the coast this afternoon, play in the sand, and then come home and have a BBQ.
I received the call from the hospital that we've been waiting for. Lilah's open heart surgery is scheduled for July 25th. We are grateful!
Lilah's MRI went very well. I spoke with the cardiologist afterward and was very impressed with her. She was far more thorough than the doctor I saw in the office last week. She got out a "heart notebook" and showed me pictures of Lilah's needs. She was very happy with what she saw during the MRI and when I asked her if this was a common repair, she said yes. She explained things to me so I had a clear understanding of what is going on with my daughter. So far, every doctor has been positive. I am very grateful for this. The diagnosis is the same--Tetralogy of Fallot, complicated by the absence of Lilah's pulmonary artery and valve--but the doctors got great images and will, hopefully, have no surprises during surgery.
My older two and Nana came to the hospital to support Lilah. The day was LONG--got up at 6 am, checked in at 8:30 and checked out at 4 pm. My girls were great. Nana was wonderful, too:)
No pictures today--sorry--but this Mama is sick. I started getting sick in China (the last 3 days were brutal) and just when I was beginning to feel pretty good, I came down with a sinus infection.
Lilah's cardiac MRI is scheduled for tomorrow. She will be intubated for the procedure and under general anesthesia. I don't like it, but it's necessary. Being intubated is no fun and I was hoping she'd only have to go through that once-when she had the open heart surgery. Waking up from anesthesia is no fun, either. I think I might have one not-feeling-so-good babe on my hands tomorrow. But she will be one step closer to repair.
Lilah is like a little tornado--always busy, on the go, and she eats as much as 3 babes (it takes a lot of calories to keep her heart working under its current condition). So from midnight on, she will be pretty miserable. No food or milk after midnight and only clear fluids up until 7 am. Right now, as we're battling time zones and adjusting to all the new, Lilah wakes up between 10:30 pm and 3 am for a midnight snack. Tonight, that will have to be chicken broth and jello. (So, if you hear the battle cries, you know where they're coming from :))
I headed to China with very few expectations. I thought Lilah might be tired, weak (Not A Chance). I wondered if she would have trouble adjusting (NOPE!). I hoped for the best, but knew it could be worstcase scenario (as far as her heart goes, it's neither). I'm going to write more on this later, as I know a lot of APs have concerns about this. Yes, we are facing more than we had hoped but I would do this all again in a heartbeat. My girl is perfect.
We're heading off for a swim now. It will be Lilah's first. She loves watching, but when we were washing the car yesterday, she definitely did not like getting wet. So I wonder how this afternoon's activity is going to go.
The first few days home have been busy. We spent Thursday at Children's hospital. Friday was Ava's graduation party from kindergarten. Yesterday, we had to restock the kitchen, so a run to Costco and Wal-Mart. Today, all 3 girls need summer shoes. Of course, there has been lots of play time and the girls are loving it. Jet-lag is beginning to fade. Lilah is a good sleeper, though she has woken up once nightly for a snack (she didn't wake during the night in-country, but we are still working through the time zones...).
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.
We took the subway to a book store. The book store was great, with a floor dedicated to kids. I picked up a few things I think all the girls will like.
This morning we toured a memorial site on our way to the clinic to have the kids' TB tests read. Lilah's was negative (Thank You, Lord!). But then I was told there was a problem with the paperwork and Lilah would need to see the doctor again. Yes, stressful. We saw the same doctor we saw on Saturday, and then 3 more doctors, all of whom listened to Lilah's heart. While they all agreed that she is cynaotic, they also feel that she does not have heart disease. HUH?
