Liliana Sue

We had a doctor visit this week. Liliana is up to 15 pounds 14 ounces. I always forget how long she is so I can't post that, but she is a tall girl. She still continues to improve her movements every day. She makes us so proud. She is successfully tolerating 12 hours of CPAP per day from 8am to 8pm. Her doctor asked us which direction we wanted to go next. If we were happy keeping her where she is with the vent or whether we wanted to continue to push her to see what she has in store for us. It was probably one of the easiest decisions that we have ever had to make. After she has been tolerating the 12 hour CPAP routine for a couple of weeks, we are going to try her for short periods off of the vent. By off the vent, I mean just that. We would take her completely off of the ventilator support and put her on what is called a trach shield which gives her oxygen and humidification but no pressure support or anything like that. I know she is probably not going to tolerate that for very long at first but after weeks and weeks, hopefully she will continue to strengthen just like she did with CPAP. I am somewhat nervous to do this for the first time. If you are wondering why, imagine taking your child off of the machine that has been supporting their breathing for 99% of their life. How will she react? It's hard to say, but you never know unless you try and you can not progress toward a goal if you do not have a plan. Our nervousness is overcome with the amazement and joy that she has brought us so far. Here are a couple of pictures of our beautiful girl: