I keep avoiding new blog entries because progress has seemed to slow down the past couple of weeks. Not the super happy positive news I like to share, but reality...
Lillian had an appointment last week with her Developmental Pediatrician. She was scheduled for a swallow study, but they canceled it when we told them we were already feeding Lillian more through the bottle and that I had widened the nipple. Since she doesn't appear to be aspirating, and hasn't had a chest cold or any signs of aspiration, they just said continue doing what we're doing.
One thing they did schedule was an upper GI in preperation for a G-tube. We have an appointment with a surgeon in 3 weeks to talk about the installation process, and hopefully schedule the procedure. While Lillian is eating more from her bottle, it's just not enough. It takes her nearly an hour to eat an ounce, and that's on a good day. The past two days she has really been a challenge to feed. Hardly sucking and spitting out what she does suck. I'm literally in tears typing this because it feels like no matter how much time we spend trying to eat, she just doesn't want to. I don't like the thought of force feeding my child. How crazy is it that I want her to eat now, and some time down the road I'm going to be regulating how much she eats.
Speaking of regulating how much she eats, poor little Lillian is already on a diet. Her dietician cut back her bottle by 5 mls (not much, I know) but I didn't think she would be on such a strict diet so soon. At least she doesn't care since she hardly has an appetite. So now she gets 115 mls 7 times a day.
I feel like this week she has just completely declined in her abilities. Last week she could hold her head up and she was taking her bottle better. She was batting at her toys and starting to make more noises "talking". This week she just lets her head roll all over. She wont hold it up. She wont take her bottle. When I lay her down to play with her toys, she hardly even tries. She isn't talking much either. I'm really hoping she's just worn out from the holidays and once she gets back on schedule she will surprise us and start to do better again, but I'm starting to wonder how realistic that is. I just need some kind of indication that she's still functioning. Fuck.