We celebrated Elena's one month yesterday- holla.
Elena has been extubated- yay! She made it through the first 24. This is exciting news for us. 32 hours have passed since she was extubated. The first 24-48 hours are the most critical and the longer she stays off the tubes, the more likely she will recover without having to go back to being intubated. We are/were all crossing our fingers, toes and eyes, that she would hang in there as we weren't sure how she would manage during the most critical first 24 hours (this was their 3rd attempt). After 1pm tomorrow, Elena will be at the 48 hour mark and more than likely be in the clear.
Once again, Elena has shown us her character. Whereas I have been insecure, uncertain, generally a mess, she has been steadfast in her recovery which has been slow but steady.
In replacement of ventilated intubation, Elena is currently on the CPAP which has two nose prongs that deliver oxygen. She does all the inspiring and expiring (we were scared she might need help doing this, but she's doing a pretty good job herself- the ventilator was giving her breaths per minute), and gets oxygen through her nostrils. The next step after this is to begin feeding (small amounts of my breast milk) and see she how she tolerates it. This should begin this week, and I think it will be tremendous help to her growing and getting better.
As for me, I am a hot mess. Being at the hospital daily is not easy. It has been a long time since I have had to navigate a large bureaucratic system, and I don't feel like I am doing a great job, especially since I am not at my best. It's a tug of war. I don't want to be a pushover, yet there is a fine line with being aggressive and pissing off the people who care for your child. I keep hearing Mary Jo in my head, "be assertive not aggressive." So it is not uncommon for one of the hospital staff to see me crying about some incident or the fact that Elena's diaper hasn't been changed or the fact that she doesn't get non-medical touching if I am not there - these things are tantamount to negligence in my book. Okay, not uncommon is stretching it a bit, but I have been known to have a few episodes (I don't see any of the other mothers crying).
At the same time I don't want to push the nurses too hard because they are truly excellent, and though they cannot give Elena the care that I would give, they are doing a good job and I cannot go behind them and question them every step of the way without making them pissy. I am trying to find my way. This gets harder because Elena is not getting cared for by the nurses that I have requested (like the primary Monica). Yeah Monica the savior is a dud because no one is scheduling Monica to take care of Elena. So right now I am frustrated and upset, but happy because of Elena's progress.
Like I said, I am trying to find my way.