I am frustrated this afternoon. The last 3 days we have been hearing how great Buddy is doing and how we will be going to Care-by-Parent soon (the final step in the NICU process). I was told to take my CPR class to be ready (you have to take it within a week of leaving the NICU). I was told bring up his carseat.
Apparently last night (late/early morning after our last visit) Buddy had another episode while he was eating – oxgyen levels dropped, this time so did heartrate, and he went a little blue. So today it seems they are on hyper-senstive while he is eating. I was told at my 11 o’clock visit that we will not be doing care-by-parent, and not given a projected day that we will. He also is not getting his carseat test.
I am just SOOOO frustrated. I want him to be as safe and healthy as possible, but I wish they would not have gotten my hopes up. I also am frustrated because I feel like we are just told stuff but we aren’t part of the discussion. And today I saw a parent take their baby to care-by, and if you were able to eavesdrop on the whole situation as I have been able to the last couple of days you would be thinking the same thing as I am thinking. “That baby gets to leave, but Buddy doesn’t?”
I had a breakdown on the drive home just now (not the car, me). Crying about the unfairness of it all. Why some people have it so easy and have so little to deal with, and other people get dealt more then their fair share of trials. And this trial pales in comparison to some of the trials we have seen friends/loved ones go through. I don’t get it. I need an A+B=C type of life. Do the right things and good things will happen, do enough bad things and you will have bad things happen to you. It doesn’t seem to work that way. There is no logic to life, and today I am annoyed by that. My optimism from earlier this week is on vacation. It will return, but I just need to have an Eeyore kind of a day.
I am tired. I am whiney. I am up at the hospital at least four times a day now because I am tired of seeing my baby so little, but it is exhausting. I am tired of not being the one who gets to make decisions for my child. I am tired of having different nurses all of the time instead of some consistency for Budd. I am tired of trying to hold it together when I get disappointing news at the hospital when what I really want to do is yell at someone. I’ve had some really good days lately, but today I just feel frustrated and low.
I’m sure I will be better tomorrow.

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