It has been a few days since I last wrote, and it's because Lucia's condition really hasn't changed drastically. Yesterday, we received a visit from a very kind and compassionate nurse (a faithful Christian woman too), and she kind of put things in perspective for us. We were starting to become hopeful again since being home, but the nurse confirmed in the most loving way possible that it's not looking very good for Lulu.
Her health is deteriorating. There is a very bleak flow of oxygen in her lungs and they are continually filling up with fluid (despite medication to counter this), she is still feverish (a sign of her trying to fight the infection -- she really is a fighter), her heart rate is slowing down (probably getting very tired of all that hard work), she has lost quite a bit of weight and she isn't sleeping very well (the lack of sleep probably has to do with being unable to breathe deeply for very long). She has been coughing as though she's been smoking cigarettes since birth -- really, it's shocking what kind of a cough comes out of her. Her sweet cry is back, but is weaker than ever. It still makes me smile because of its sweetness, but my heart aches at the same time. She is somewhat herself at times - still swiping at that feeding tube and now the cannula. Yesterday, she made my day when I tried to tickle her and she gave me a smile. Most times though, she seems so beaten up by this illness.
The nurse put it beautifully yesterday...there are one of two miracles that can happen. The first is a total healing miracle..probably the magnitude of Christ-raising-Lazarus-from-the-dead type of miracle. The second kind of miracle is the one where Lucia goes to be with Jesus in Heaven. I don't know how to describe the pain of even writing that out. We know in our minds that this is what we all strive for...but our hearts have to experience the pain of death before getting to that perfect place, where "all sickness and sorrow have fled away." We pray for a miracle, but only God knows which one we will receive. Lord have mercy.