you dirty bastards. thank you so much for your "fair access policy" which CUT ME OFF on tuesday night for 24 hours. if your going to do that, the least you could do is have the balls to call a spade a spade. lets face it, your "fair access" policy is nothing but a way to get more money out of me. if i give you more money each month, i can download more. if i buy a "redemption token" after i go over my limit, i can restore my connection. i'd much rather you just say, "i want more money from you", than try to pass this shit off as "fair access".
for those of you who are lucky enough to be able to get dsl or cable internet in your area, let me tell you a little about hughes net satellite internet. first of all, they charge an exorbatant amount of money each month to get "high speed". high speed my ass. it's certainly faster than dial up, but it's really not "fast" by any means. this is why i can't even watch videos on the internet. say the videos DO actually load (which a lot of times they don't), all they do is skip and skip, making the video frustratingly impossible to watch. oh, and if i do get to watch a skipping video, that uses up my daily allowance pretty quickly, and then i get cut the eff off. oh, my favorite part of their commercials is when the woman on there says "just think, in the time that you can download just one song on dial up, you can download an entire album on hughes net". NO YOU CAN'T BECAUSE YOU PIECES OF SHIT CUT ME OFF AFTER ABOUT 6 SONGS -- FAIR ACCESS!!!
so, to all you lovely policy makers at hughes net, please rest assured that i will be telling everyone i know how much you suck and will be looking for every possible alternative to your service that there is out there. and by the way, i'd bet my whopping savings account (okay...it's actually really tiny) that whoever decided to make that damn fair access policy was NEVER a stay-at-home-mom WITHOUT internet.
sincerely,
a pretty unsatisfied customer that has absolutely no loyalty to you and will be switching as soon as possible.
Thursday, March 31, 2011
Present Day: Open the Flood Gates!!!
the followers are pouring in now -- i'm up to 4!!!!! i'm such a dork, i just get embarrassingly excited when i get a new follower. does anyone know why this is? why do i feel the need to be followed / read?
so, note to all readers, i'd recommend signing up to follow me now before the internet just shuts down because of overcrowding on my blog!
but seriously, thank you to my little core group of followers :)
so, note to all readers, i'd recommend signing up to follow me now before the internet just shuts down because of overcrowding on my blog!
but seriously, thank you to my little core group of followers :)
Wednesday, March 23, 2011
December 2007: A Harsh Reality
i have seen more in the past few weeks here in the NICU than i have in my short 25 years on earth...more than i ever wanted to know. so many babies are sick. this isn't what i signed up for. this isn't what i saw on tv and in the movies. there, everyone has healthy babies. they make jokes out of getting pregnant. they make comedy movies about pregnancy and delivery. comedy! there was nothing funny about Charlie's delivery. there's nothing funny about what is going on now. america's funniest home videos has funny stuff about babies all the time. the thought of laughing at anything baby-related right now makes me want to vomit. i feel physically sick everyday. Charlie is getting sicker and sicker, and nobody can tell me what is going on, and whether or not he is going to live. today i finally asked one of the doctors point blank, "is he going to die"? she said "i don't know. it is a possibility".
a lot of the babies in this nursery have come and gone. they come in because of a relatively minor issue...stay as little as one day, or a few days, then they move on to the next nursery, and the next thing i know i don't see their name on the NICU boards anymore...they have now moved into the "NICU graduate" category. they've gone home....gone home to be with their families and be held and rocked and loved.
there are only a couple of us left here that were here when we first started out. david is one of them. i feel like such a bitch looking back on my behavior...at the time, i didn't think about him very much. i always saw him because he was right next to us, but i was so focused on Charlie that to be perfectly honest, i didn't care much about what was going on with david. now i realize just how sad his situation was. no one ever came to see him. he had absolutely no one in this world. here is this tiny baby who has no one there to love him and look out for him. big C has been amazing to him...she seems to have tried so hard to give him all the love she possibly can, while still being a professional and also taking care of Charlie at the same time (since they share a pod). david had an MRI the other day and big C was visibly upset that day. i don't know too much...only what i can pick up from the hushed conversations. but from what i gather, the MRI showed that he has significant brain damage from the stroke that he suffered just before birth. a very nice lady came in a couple days ago and spent some time with david because she was thinking of adopting him. i heard the doctor talking to her, and david will never live a normal life. they said that she may be able to take him out in public when he's older, but they just don't know. it sounds like his brain will slowly just deteriorate and shut down piece by piece, and eventually the areas that control his vital functions like breathing and heartbeat will also shut down. i never saw the woman again. i know big C was very disappointed that the woman didn't adopt him, but she was an older woman and i think that she probably felt that it was just too much for her to handle. i admire her for just even trying in the first place. i think it takes an amazingly kind and selfless person to even contemplate taking on such a feat. i think of david often. he always had very stable vital signs, so he was moved out of our nursery and up to the next nurseries. from what i know he was released after a month or so in the NICU to a long term care place. i wish i knew what happened to him....well, that's not entirely true. sometimes i wish i knew, but other times i'm glad i don't. his story makes me so sad that i'm too scared to ask anyone if they know what happened to him. i don't even know if he is still alive.
a few days ago a new baby was brought into our nursery. it was a transport from another hospital. i think the woman delivered at her local hospital and the baby was stablized and then brought to this hospital. they kicked me out when the baby first arrived so i wasn't able to hear anything about its diagnosis or prognosis. i don't think that it was a premie though because it's really big. most of the other babies are absolutely tiny and i could tell that this one was much bigger. i don't know what, but something is very wrong with this baby. you can just tell by looking at it. its abdomen is extraordinarily swollen and big. i try not to stare...(big C will yell at me again if i do)...i just pass by quickly when i first come in the room. yesterday, jay came up to visit at night. we were getting ready to leave RMH and go over to the NICU. i decided to call first just to make sure that they weren't doing a procedure or anything where we wouldn't be able to go in. the nurse on the phone asked me to wait about a half an hour before coming over. i asked if everything was okay (i always do because i'm always terrified that Charlie is the reason no one is allowed in the room). she told me that the baby at the front of the room died. died. it was there just a few hours ago, and now it is gone. i hung up the phone, told jay what happened, tried to hold back my tears as hard as i could, but broke down within a matter of minutes. i didn't know this baby, i didn't know the parents, i had no connection to any of them whatsoever....but i did have a connection. the connection that is somehow formed between NICU parents that have never even met. i felt their pain because that could have been Charlie. i have been in shock for weeks now, and everything just came crumbling down with that baby's death....a baby i didn't even know. that could have been Charlie. that could have been Charlie. when we finally went over to the NICU we saw the father coming out of the family room. i tried to ignore him as best i could. he looked lost...a vacant expression on his face. i think that the rest of the family was in the room with the baby....their final moments together. i couldn't even imagine at the time what they were going through and how their lives would change.
how can there be so much pain in this world? how could i have missed this all along. i feel so blind-sided. i didn't even know that babies died anymore. i have never been a very religious person, but i do have some faith. this entire experience is shaking that faith to its core. if there is a god out there, how could he possibly take the life of a tiny baby. a baby who hasn't even begun life yet. how can he make these babies suffer like this. i don't understand any of this.
a lot of the babies in this nursery have come and gone. they come in because of a relatively minor issue...stay as little as one day, or a few days, then they move on to the next nursery, and the next thing i know i don't see their name on the NICU boards anymore...they have now moved into the "NICU graduate" category. they've gone home....gone home to be with their families and be held and rocked and loved.
there are only a couple of us left here that were here when we first started out. david is one of them. i feel like such a bitch looking back on my behavior...at the time, i didn't think about him very much. i always saw him because he was right next to us, but i was so focused on Charlie that to be perfectly honest, i didn't care much about what was going on with david. now i realize just how sad his situation was. no one ever came to see him. he had absolutely no one in this world. here is this tiny baby who has no one there to love him and look out for him. big C has been amazing to him...she seems to have tried so hard to give him all the love she possibly can, while still being a professional and also taking care of Charlie at the same time (since they share a pod). david had an MRI the other day and big C was visibly upset that day. i don't know too much...only what i can pick up from the hushed conversations. but from what i gather, the MRI showed that he has significant brain damage from the stroke that he suffered just before birth. a very nice lady came in a couple days ago and spent some time with david because she was thinking of adopting him. i heard the doctor talking to her, and david will never live a normal life. they said that she may be able to take him out in public when he's older, but they just don't know. it sounds like his brain will slowly just deteriorate and shut down piece by piece, and eventually the areas that control his vital functions like breathing and heartbeat will also shut down. i never saw the woman again. i know big C was very disappointed that the woman didn't adopt him, but she was an older woman and i think that she probably felt that it was just too much for her to handle. i admire her for just even trying in the first place. i think it takes an amazingly kind and selfless person to even contemplate taking on such a feat. i think of david often. he always had very stable vital signs, so he was moved out of our nursery and up to the next nurseries. from what i know he was released after a month or so in the NICU to a long term care place. i wish i knew what happened to him....well, that's not entirely true. sometimes i wish i knew, but other times i'm glad i don't. his story makes me so sad that i'm too scared to ask anyone if they know what happened to him. i don't even know if he is still alive.
a few days ago a new baby was brought into our nursery. it was a transport from another hospital. i think the woman delivered at her local hospital and the baby was stablized and then brought to this hospital. they kicked me out when the baby first arrived so i wasn't able to hear anything about its diagnosis or prognosis. i don't think that it was a premie though because it's really big. most of the other babies are absolutely tiny and i could tell that this one was much bigger. i don't know what, but something is very wrong with this baby. you can just tell by looking at it. its abdomen is extraordinarily swollen and big. i try not to stare...(big C will yell at me again if i do)...i just pass by quickly when i first come in the room. yesterday, jay came up to visit at night. we were getting ready to leave RMH and go over to the NICU. i decided to call first just to make sure that they weren't doing a procedure or anything where we wouldn't be able to go in. the nurse on the phone asked me to wait about a half an hour before coming over. i asked if everything was okay (i always do because i'm always terrified that Charlie is the reason no one is allowed in the room). she told me that the baby at the front of the room died. died. it was there just a few hours ago, and now it is gone. i hung up the phone, told jay what happened, tried to hold back my tears as hard as i could, but broke down within a matter of minutes. i didn't know this baby, i didn't know the parents, i had no connection to any of them whatsoever....but i did have a connection. the connection that is somehow formed between NICU parents that have never even met. i felt their pain because that could have been Charlie. i have been in shock for weeks now, and everything just came crumbling down with that baby's death....a baby i didn't even know. that could have been Charlie. that could have been Charlie. when we finally went over to the NICU we saw the father coming out of the family room. i tried to ignore him as best i could. he looked lost...a vacant expression on his face. i think that the rest of the family was in the room with the baby....their final moments together. i couldn't even imagine at the time what they were going through and how their lives would change.
how can there be so much pain in this world? how could i have missed this all along. i feel so blind-sided. i didn't even know that babies died anymore. i have never been a very religious person, but i do have some faith. this entire experience is shaking that faith to its core. if there is a god out there, how could he possibly take the life of a tiny baby. a baby who hasn't even begun life yet. how can he make these babies suffer like this. i don't understand any of this.
Tuesday, March 22, 2011
Present Day: Blogging Dummy
just wanted to throw it out there that i was so excited and thankful that i now have two followers!!! i actually wanted to respond to both of you, but i can't figure out how! so thanks for following me! i'm not a snob for not responding, just kind of a blogging idiot...i'm new to this :)
thanks for listening!
thanks for listening!
Monday, March 21, 2011
December 2007: Holding Charlie
big C did something for me today that no one has done yet. she had me hold my son. it's been over three weeks since he was born and all i've gotten to do so far is watch him lay there. they let me change his diapers most of the time...and that's it. that's the only way i can take care of my son. so today big C asked if i had been able to hold him yet. i told her no. she said, "come on, you're going to hold your baby". i was so apprehensive. i told her that i was too scared to hold him because i was afraid that he would de-sat. she said to me very frankly "that baby needs to be held. hold your son." so she brought the rocking chair in, brought in respiratory care so they could help hold the vent tubes, and after about 10 minutes of preparation, she took him out of his what-ever-you-call it and put him in my arms. and my fears came true...he started to freak out and started de-sating badly. she had to put him back and they had to airbag him. i was crushed. my son didn't even know me. he didn't even want me to hold him. we have had ZERO bonding....why wouldn't he freak out? this strange person is trying to hold him. once big C had his O2 saturation back under control she said we should try again. are you kidding me??? did you not see what just happened? i really didn't want to because i was so terrified, but she insisted. so she sat me down, and put him back in my arms. he didn't freak out! he actually opened his eyes and looked right at me. it was like it was the first time we had seen each other...the first time we had met. i cried. i was finally holding my baby. something most people get to do within five minutes of delivering, but took me three weeks to do. i said to him..."i know you're never going to remember this moment, but i always will". it was the happiest day of my life. better than my wedding day, better than the day he was born, better than any day i had ever had. we were able to sit there for about 3-5 minutes before he started to fuss again and his O2 started to drop. so big C had to take him back and get his O2 stabilized.
and that was it...i know it doesn't sound like much, and i know in reality it really wasn't much at all. but it was a moment i'll always remember. i was so filled with hope and love.
and now i am starting to cry and have another breakdown, so i have to end this post. there must be some cleaning i have to do right? anything to distract me from the memories that i have had to bury so deeply.
and that was it...i know it doesn't sound like much, and i know in reality it really wasn't much at all. but it was a moment i'll always remember. i was so filled with hope and love.
and now i am starting to cry and have another breakdown, so i have to end this post. there must be some cleaning i have to do right? anything to distract me from the memories that i have had to bury so deeply.
Sunday, March 20, 2011
December 2007: Big C Yelled At Me Today
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.
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.
Friday, March 11, 2011
December 2007: Bad Day
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.
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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