i came into the NICU this morning and the second i looked at Charlie i knew something was wrong. he wouldn't open his eyes, he wasn't moving at all, he was just laying there. yesterday he had been doing so well...he was taking almost all his own breaths (lots of purple lines on the vent) and the pressures on the vent were the lowest they'd ever been. he was close to being moved to a cpap machine. today, he isn't taking any of his own breaths...none. they also had to raise the pressures on the vent. when i asked what the hell was going on they told me that early in the morning he had pulled the vent tube out (extubated himself), so they had to re-intubate him, and they gave him morphine to help with the pain of being intubated. i'm really worried, but they seem to think it's no biggie. he's just a completely different baby today. i knew the second i saw him that something was different. i don't like the morphine, i don't like what it does to him.
later in the day things got worse. Charlie stopped urinating. they don't know why, but every time they change his diaper they weigh it so they can keep track of input vs. output. he had dry diapers, so they ended up having to give him a diuretic, lasix. this started him peeing again, but as soon as they stop giving it to him he stops peeing.
i want to know what the fuck is going on. what is wrong with my son? the doctors seem to be getting more and more concerned, and they have no answers for us. i asked "hope-you-burn-in-hell" doctor if it was possible that all these things that are going on are just little quirks or coincidences that will all eventually resolve themselves. he said he doesn't think so. he thinks Charlie has some kind of disorder that is causing all this and they don't know what it is.
the geneticist has been in to see Charlie. they asked if i wanted to talk to him, and i asked if he had any answers for me. when they told me no i said that i didn't want to see him. i fucking hate this. something is wrong with my son and nobody can tell me what. nobody knows what is going on, or what the prognosis is. i hate this so much. i need to know. i need to know what is going to happen to Charlie.
the march of dimes woman keeps coming around to me. she's nice, but she keeps asking if i need any support and i just want to be left alone. she asked if i wanted to have a photo session with Charlie and then do some scrapbooking with the pictures. i said no. i'm too scared of taking pictures. what if the worst happens? i wouldn't ever be able to look at the pictures. i would hate myself for making a scrapbook when i should be by his side. i can't leave his side, but i'm so scared of getting close to him...getting attached.
i hate this.
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