10-12-10 7:30pm

I'm just tired. Tired of seeing the NICU, tired of the phenomenally nice nurses, doctors and staff, tired of seeing my baby full of tubes, tired of getting nothing but bad news for days on end, tired of the bing of the alarms, tired of wanting to throw-up from crying, tired of wiping my nose, tired of watching my wife blame herself for something she didn't do, tired of having to tell Zoey that her little sister isn't coming home yet. Of all the things that I am tired of though it is answering the question, 'how are you?' - it is not that I am ungrateful in any way, shape, or form. The outpouring of support has been unreal around our little flower and it would take me a 1,000 life times to repay all of the warmth and love, but the answer that I feel every time when someone asks 'how are you?' is I have never ever in my 35 years been worse. There is no silver lining to what Riley is going through now; there has not been a better tomorrow.

Her blood cultures came back and she had elevated C Reactive Protein (CRP) levels, they were at 2.5 - they want them around 0 (on a 0-100 scale 2.5 is around 0, but the people with the MDs won't listen to me). This means that she has an infection somewhere in her little body - again, another issue with 22q is immune system problems and we were hoping to avoid some of the 200 issues that come with this awful thing, but it seems as though she is hitting every one on the punch list.

I know that we are supposed to take it one thing at a time and fight each thing as it comes, but we fight problem A and beat it and then problem B + C creep up, we fight problem B and beat it, but problem A comes back, we still have problem C and all of a sudden problem D and E come along for the ride. She can't win. This sounds weird but I want it just to be a heart issue - I desperately want my child to just have a gapping hole in one of her heart walls, but that isn't the way it is or will ever be.

I want to be laughing about how fuzzy my beautiful little girl is. I want to be watching her lift her neck already and be very proud. I want to watch her already using her hands to grab things and be handing her a little mini baseball. I want to hold her for hours on end without fear that I am making her throw-up or get her deathly sick. I want all these things, but instead I sit in a NICU for 12 hours a day and then lie in bed at home thinking about how I should be with her or I'm driving in my car wondering why it takes so long to get down 400, or I am typing another issue in to google and finding out how awful it is. Some day it will get better - that's what I keep trying to tell myself, but I'm not that convincing.