Today is Lila's due date. It's crazy how you can look forward to a date for so long and then once you get there circumstances have changed so much. We are still in the NICU. Who would have ever thought that we would be here this long? Especially with no end in sight. It seems to be a balancing act with Miss Lila. If we take her off her oxygen then she stops eating as well. If she eats well then her oxygen levels go down. I keep waiting for that "light bulb" to go off that all the nurses keep talking about. They have done chest X rays and labs and everything is checking out normal, but it is hard for me not to jump to conclusions, that she may have some genetic disorder that they are not finding. This really has been the most trying experience of my life. I apologize to those of you who have called and I have not returned your calls, I fear you would not be able to understand me through all the sobs. I am trying so hard to be strong and not fall to pieces but I'm not doing the best job at that. This experience has brought a whole new perspective to my life. The only thing that truly matters in this life is the health and happiness of your loved ones. If you happen to be lucky enough to have strong and healthy children please don't take it for granted. I would do anything to get my little girl home and in good health.
Lila- if you read this when you are older, you should know how many people love you and pray for you and think about you constantly. You are my whole world now, you and your dad. I love you more than anything. Nothing matters as long as you are alright.