Another day is over

Raphaela had a rough night last night. For some reason, maybe because her oxygen sats and blood pressure were good, they decided to stop the muscle relaxants so she was fluctuating all night. They started the muscle relaxants again this morning so she has had a relatively stable day. She had an echo done this morning which is showing that her heart function isn't the best, but it isn't the worst either. There is also some leakage from around the patch they put on her aorta which isn't good. The doctors will be keeping an eye on this as they may need to open her chest again to repair it. It feels like we take one step forward and then two steps back which is so frustrating but as Roberto (doctor) said to me today, "she is doing everything right but she is doing it in her own time and on her own terms."

They have stopped her feeds for the time being as since her chest was closed, her tummy didn't seem to be tolerating them too well so her dietician (yes she has her own dietician.. LOL) came down to see how they could up her calorie/fat intake. She is back on her drip of Lipid which is basically fat (as far as I understand) but I am hoping they will start her feeds again soon. I am having nightmares about the ladies from the formula room calling me to tell me that I am taking up too much room in the freezer with all my bottles of EBM.. hehe