I know it has been a long time since I have posted, life has just been very busy. There have been several updates on Lily's journey so I wanted to get you all caught up.
The last time I posted I said that they were sending her information to several other hospitals, we received several recommendations to include Children's Hospital of Philadelphia(CHOP) in that group as they have an amazing cardiac department there plus a specialist in pulmonary hypertension. Our cardiologist was in agreement so it was sent.
While waiting to hear news back Lily got another cold and ended up being admitted to the hospital again. Fortunately this was a much shorter stay, although it did take her several weeks to fully recover from the infection. Whenever she gets a respiratory infection she gets so blue and distressed especially when she coughs, it breaks my heart - it also means a lot of sleepless nights, as she constantly wakes up coughing.
Right before Thanksgiving we received a message from our cardiologist to come in for an appointment - this could only mean one thing - he had heard back. We had plans to go away to the beach for Thanksgiving with my family so we had to wait until we returned for the news - waiting was not easy.
Lily recovered from her cold just in time to go to the outer banks in North Carolina, her first visit to the beach. It was a wonderful break, we rode bikes, played football on the beach, ate too much food - but most importantly spent time together with our family, we had much to be thankful for. Lily loved riding on the back of the bike, she smiled and laughed every time we put her on it - it still amazes me how far this girl has come.
Last week was full of appointments. We met with early intervention to set up therapies for Lily, then on Friday we met with our cardiologist.
So here is the bottom line - CHOP agrees with our cardiologists that it is too risky to attempt surgery right now!!! So now what??? They have decided to start her on medication for the pulmonary hypertension the results of medications are varying,there are no guarantees it will do anything, but we are believing for positive results. The medicine she is getting is actually Viagra (hmmm - I know sounds strange), she will receive it 3 times a day. We have a monitor at home to measure the oxygen levels in her blood, her norms are in the 70's. What we are hoping to see is her oxygen levels increase into the 80's this would be a positive sign that her lungs are responding. They are going to treat her until April and then do another cardiac cath - they will then reevaluate her pulmonary hypertension and see if it has improved enough for surgery.
We felt encouraged by this news, it feels good to have a plan, to be doing something to help her, to have a goal. Yes it is hard to hear surgery is not an option, but we have felt that was the case for a while, what we were praying we wouldn't hear was that there was no hope. She has already shown us she is a fighter, she is improving in development every day. She sits, scoots, laughs, claps, waves, rolls, shakes her head no - and today for the first time ever - she put food in her mouth (fruit loops). She chewed them up and spat them out over and over again. Until now she has refused anything but her bottle - this is a HUGE step. 4 months ago she was doing none of these things.
So today we are thanking God for each accomplishment, for each step that may seem small to others but are huge to us and are huge to Lily.
Thank you for all your love and support.
Pictures to come soon.
