Lyla continues to do great on her feeds. I learned today that 20ml is her "goal" and that there are no plans to add more. I hope to talk to the Dr. tomorrow to figure out why this is. She was at 27ml at home, but with a different formula. Perhaps something to do with the special formula she is on (monogen-no fats to help with the kylo). Right now they are talking about adding fat oils to her feeds instead she has been missing out on those for several weeks now. Being reminded of this, makes me worry about all the other essential things that Lyla has not been receiving while in the hospital. And I just get so worried about how much all of this is going to affect her health, her body, mind, and physical abilities. Only time will tell, but I function much better having a general idea about the future and there is just no way of knowing. There isn't a way of knowing with Parker and Mabel either, but at least with them I can kind of picture the future.
Other things going on: echo done yesterday shows a little bit of inflammation around the heart. May just be more fluid, so more details/info with that to follow.
Dr. S had a hard time drawing blood today. It took 2nurses to hold Lyla down (one of them being a large male nurse) and she even had numbing cream with the hopes that it would keep her calmer... She was soooo upset. It is really heartbreaking to hear her and watch and do nothing.
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