well, i knew it was going to happen at some point. up until now big C hadn't been on Charlie, but today she was. when i walked in the nursery and saw her there at his pod, i thought..."ohhhhhh boy...here we go". this woman just really scares the crap out of me. she runs a DAMN tight ship, and i'm so scared of messing up....and i did....my cell phone went off while i was sitting there with Charlie. shit. i knew i was supposed to have it turned off, but i just forgot, and with everyone wanting to know how he's doing and what's going on, i had it on. "YOU'RE NOT SUPPOSED TO HAVE THAT ON IN HERE!!!!!".
so after she yelled at me, i started to get to know her a little better. remember how i told you about that poor baby next to Charlie? i feel so sorry for him. story goes that his mother had decided to give him up for adoption before he was born. then, he had a stroke in the womb right before he was born. they said that she had decided to give him up before she knew anything about the stroke, and i just hope and pray that that is true. but this poor baby didn't even have a name. they were just calling it baby ___(insert last name). so big C said that she named him. she said, "that baby needs a name, so i named him David". i thought that was really nice. every baby deserves a name. i think big C has kind of taken David under her wing. she has signed up to be his primary nurse. side note: in this NICU every baby has at least one or two primary nurses. it seems like the nurses a lot of times get to chose what babies they want for their primaries. so far Charlie has one primary nurse that does the evening shift, and one that does the midnight shifts. both are so nice and i love both of them.
so anyway, since big C is David's primary now, she will be in our pod most of the time. looks like big C and i are going to get to know each other pretty well...
things have been really hard. jay is still trying to work, so he spends most of the week back home while i stay here at RMH. then he comes up on the weekends. he does come a few nights during the week just for a couple hours. luckily his boss has been extremely understanding about the situation and has been giving him a lot of time off. thank god for RMH. i don't know what i would do without it. where would i stay? there's no way we could afford a hotel every night, and meals on top of that. i would hate having to drive to the hospital every day from home -- it's an hour and 20 minutes one way.
Charlie has had a few visitors. my mom has been amazing about coming up whenever she can. the thing i love about my mom is that she's pretty easy to please, and i never feel like i have to entertain her. she knows that i just want to stay with Charlie, so she's perfectly content to sit there with me for 8-10 hours at a rip. she reads, knits, sometimes dozes a little. it's nice to have some company.
Charlie still isn't improving. it's been a few weeks now and he's not making the progression that we all were expecting. i'm starting to get really worried about the long term effects of being on a vent. they said that babies can handle vents for a little while, but if they're on them too long they can suffer permanent lung damage. the longer he's on it, the worse things look. they can also suffer eye damage from being on oxygen for so long. everyone keeps telling me that the NICU is a roller coaster ride. there are a lot of ups and downs, but for us so far, there haven't been very many ups. just when they think they can lower the pressures on his vent, a bad blood gas comes back and they have to raise them up again. i'm getting really frustrated because i feel like they're trying to move him too fast. they get a good blood gas back, so they lower the pressure. then, instead of giving him some time to get used to that new pressure, they lower it again if the next blood gas will allow it. then, the next thing that happens is that the next blood gas is terrible, and they have to raise the pressures back up even higher than before. it's really pissing me off. it happens every fucking time. i know exactly what is going to happen, but they won't listen to me. i would much rather take some slow baby steps, rather than take one step forward TOO FAST, and then end up having to take two steps backwards. i really get frustrated with the doctors. yeah yeah yeah, i get it...you went to medical school, you're smarter than me, blah blah blah...shove it up your ass. but you know what? just because i didn't go to medical school doesn't mean that i'm an idiot. i went to an awesome college, graduated, went on to an extremely competitive phd program. okay yes, i dropped out of grad school because i hated it, but just the fact that i made it into that program shows that i have half a brain. i'm not stupid. i sit with Charlie ALL day, EVERY day. i am his mother...the only one he has. i see all the things that happen during his days and you really can learn a lot by observing and picking up on patterns. i feel like i should start writing down my predictions so then the doctors can see that i know what's going to happen in some instances.
looking back, i realize now that i was in extreme denial about Charlie. what was on my mind at this point was the intense worry about what his life would be like. would he be able to play sports? would he have learning disabilities? would he have to be on some kind of respiratory support? i was terrified about what his quality of life would be. i should have been worried about whether or not he was going to live. it's not that i didn't realize that death was a possibility, it's more like i was just too scared to even entertain that possibility. i couldn't even go there. i even said to my mom that i thought that if he was going to die he would have died already. i thought that we were somewhat "out of the woods" on the live or die question.
i think that it was at this point too that my anger started to build. anger and bitterness toward the whole world. why is Charlie sick? why can't i hold him? why does everyone else i know get to have a problem-free pregnancy and pop out a healthy baby? how come there are so many people who drink, smoke and do drugs while they are pregnant and they don't have any problem? why is this my life? why is this happening to me? more importantly, why is this happening to Charlie? i know that he is suffering and it is killing me to see it.
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