Jane’s condition continues to be slow and steady (like the tortoise and the hare-the tortoise wins the race…) The doctors have started to discuss weaning Jane off some of the medications she is on. This will be a VERY slow process to see how she begins to react to various stimuli and if she will hold up on her own. So far so good, although they have only begun and the changes have been minimal. We will begin to see changes (good or bad) when the weaning is significant enough. We still havent heard anything from the team of doctors that met today to discuss Jane’s condition. It is likely that no definite plans were made since we are still early in the game and there is much they want to see happen before talk of surgery. The meeting was more of a brainstorming session for all the big shots to throw around their ideas and fight over whos idea is best.
Tonight we have the best nurse….she called Jane her baby away from home. She recommended that we set up our own conference with the surgeons and cardiac team to discuss our options. She said she feels that after a week of having no plan she fully supports us meeting with the team to get some idea of what their thoughts are. Are they looking for certain numbers or specific changes to occur, are they still considering surgery or have they taken that off the table?? We have no idea! It’s been nothing but a waiting game and although Jane is worth every minute…it would be settling to hear something concrete. So, for the time being, we continue to wait and enjoy every moment with her despite sitting at the hospital. I asked our nurse tonight how long we can anticipate being here and she couldnt say for sure but she did say that we have a long road ahead of us. She also gave me a different way to look at it; she said whether or not we were able to take Jane home right away I would be sitting at home for several weeks anyway so instead of sitting at home I am sitting at the hospital and giving myself the time I need to recover from my own surgery. That was a fresh way to look at it because I know if I was at home I would totally be over doing myself and forget that I just had a major surgery!
Daniel and I continue to be over joyed with the support we are receiving. Jane is loved by so many people; she is so lucky!! (and I am blessed to have a daughter who has made such an impact on people’s lives after only a week of being born- already she has changed me for the better).