Today was a tough day! Emma pulled her feeding tube all the way out this morning during one of her feedings and the nurse didn't notice for a long time. The nurse told us that she was crying really hard and by the time she got the feeding tube back in and got her caught up on her food Emma was exhausted. By the time we arrived to see her, she was sleeping and the nurse said we shouldn't bother her. Luckily we were just in time to talk to her group of doctors who were making their rounds. They increased her medicine to help her breathing and heart issues in hopes that we can start feeding her by mouth again. The one good thing they talked about was that her head size is not increasing. Her phosphorus levels are coming down a little, but are still too high. Later this evening I went in to see if I could hold her for a while, but when I got there the nurse explained that her fast breathing is starting to take its toll on her oxygen levels. Her medicine should help fix that, but the higher dose hasn't kicked in yet. They have put the oxygen tubes back on her nose with just puffs of room air to see if they can increase her oxygen levels. Hopefully tomorrow will be a good day!!! It is not natural for a mother to be told that she can't hold or touch her baby.
This is how separated from her I felt today