Our server has been down all morning….so sorry.
She is up to the full strength formula at 20 cc’s an hour. So far she is tolerating that well. She is still throwing up a bit, but a little bit is considered “normal.” They turned off the lipids (fat deposits that are infused intravenously) for good yesterday and Dr. Rao thought that 20 cc’s was pretty close to her goal amount of food.
BUT- she lost weight again today, so they turned the lipids back on and are deciding whether or not to keep the volume at 20 and up the calories…which is to make the formula more concentrated. OR they can keep the concentration the same and up the volume. I don’t know which way they are going to go yet.
Hopefully we can get this figured out and start gaining weight again. She had a great Sunday and so far a great morning, Nicole said she is comfy and content. Yeah! I was warned by MANY many heart moms that the figuring out the feeding plan is one of the most frustrating aspects of this entire journey and boy were they right…all in God’s timing.
Oh and she has gotten 2 negative MRSA swabs back, next weekend will be her last one and if it is negative she can get out of isolation and actually go for a walk in the hallway! How exciting!
Ethan started first grade today and had a great day. Tomorrow is his first full day, should be exciting…
Much much love to all-