We drove to CHOP on Wednesday, and Lily had her appointment Thursday morning. We were able to get a last minute room at the Ronald McDonald House - what a fantastic facility, and wonderful organization, they took such good care of us.
We were at the hospital at 7:20am, first they took her for an echo, without sedation - not fun. She wanted nothing to do with it and screamed the entire time - I'm not sure if they got anything useful from it, but they said it was fine. Amazingly she was very cooperative for her EKG, she was also completely cooperative for her blood pressure checks - I think for the first time ever. Then we waited, and waited to meet with the cardiologist. Finally at 11am we met first with the nurse practitioner(Katie) and then the cardiologist. I had been corresponding with Katie via phone and email for a few weeks now, so it was great to finally meet her - she took a lot of time to explain things to us - she was great and you could tell she really cares. The cardiologist was also great - and spoke very frankly to us - which we appreciated - even if it wasn't all we wanted to hear.
So this is where things stand as of now: Lily's heart condition is very serious, and this is very much complicated by her pulmonary hypertension. In his opinion the odds of her ever getting the surgery she needs are not in her favor, but not impossible. Without surgery she may only live into her teens. His goal right now - optimize the medication she is on for the next 9-12 months giving it every opportunity to decrease her pulmonary hypertension and then do another cardiac cath and see how things look. He was very pleased with how she looks right now, and so we will continue on the medicine, go back up to CHOP in the fall for a check up and then probably recath next spring. So for now that is our goal - thinking to much about the what ifs is to hard, right now we are focusing on the next year, not the next ten years.
Nothing we heard was a surprise, but there is always a little part of you that is hoping to hear something amazing. We left feeling a little shaken - not because anything had changed, but just because every time a doctor tells you your daughter may only live into her teens it's a sobering feeling, and the reality of what she is facing is once again right there in front of you. Most days we don't focus on the future, but are looking at now, focusing on the daily miracles, enjoying the smiles and laughter, her quirky personality, and her many developmental accomplishments. Our home is just like everyone else. We are busy living life - faced with the continual challenge of keeping a home functioning amongst the craziness of life while trying to maintain a balance - making sure we experience all that life has to offer and not just let it pass us by. This journey we are on with Lily has challenged us as a family to be present in the moment, see what is right in front of us and to be grateful for what we have now.
All we really know for certain is God gave Lily to us, so that she could know the love of a family, and for however long we have the privilege to be her parents we will love her with all our hearts, give her every experience we possibly can, and be grateful for every moment we have with her - she has already been such a blessing to our family, we will be forever changed because she is in it. Don't get me wrong we are by no means giving up, we have faith for a miracle.
The video below is a song that does a good job at expressing how we feel about Lily, and the journey with her so far. Although I never carried her inside of me physically I carried her in my heart for months, and when they handed her to us in China it was like the day the boys were handed to me in the hospital - like this song mentions we knew from the moment we saw her she was fighting for her life (warning you may need a Kleenex).
Thank you all for your continued love, prayers and support - it means more than we can express.