the thing is - i KNOW what happened to my son. i mean, yes i have moments where i think the MRI is wrong. or i think that maybe they looked at someone else's MRI and mixed them up and really my son is fine. i once read about that happening actually. on babycenter.com, some woman's doctor told her that her baby had a stroke. a year later or something, they went to another doctor and found out that her baby never actually had a stroke. it probably was brain swelling or something that went away on its own maybe.
anyways, the point of this post is that i KNOW what happened to my son. he suffered a stroke 3 weeks before birth and another one the week of his birth. he's most likely going to have right side motor issues. yet whenever i see a stroke sign, i go into freakout mode and panic. i don't know why? because i know what he has so why am i shocked to see signs or issues appear? we went to the rehab doctor a couple months ago and she said, his patella (sp?) reflex was brisk. and i was like, "are you sure? why does he have that??" and she's all, "because of his brain injury". i mean, he has an injury & i know that. i know he's most likely going to show SOMETHING. so why do i freak out like this?? i see him play with toys more with his left hand and i panic. i mean, i should expect these things though, right? maybe depite all my negativity, i think deep down inside i had a lot of hope that he might be one of the lucky 24% of babies who never have any signs appear (i read that 76% of babies have CP or noticeable motor issues from strokes).
i don't know what i'm talking about. i don't know if i make any sense.
Thursday, February 23, 2012
Tuesday, February 21, 2012
blaming myself
sometimes i wonder if things would've been better if my son had a chromosomal issue or something because then, i would know for sure that it wasn't my fault. but the fact that he had a brain injury - it kills me because i truly believe it was my fault. it KILLS me every single damn day. i sit here and think of all the what if's and how my son's life would be so different had i done things differently. during my first pregnancy, i exercised a lot. my ob/gyn said it was fine because i've been exercising regularly since i was 18 years old. so my baby girl came out completely fine. also, during that pregnancy, i was monitored constantly because of my nuchal test results - it showed a low papp-A so they wanted to monitor me. so during this 2nd pregnancy, i did the same. i exercised a lot too. the pregnancy was going smoothly, i thought. had i KNOWN the baby was growth-restricted, i would've NEVER EVER EVER continued to work out. i would've gone on bed rest. i truly believe that the exercising caused distress to the baby and that's why the strokes happened. the baby was too small, he couldn't handle it. it KILLS me. i deserve to die for what i did to my baby. i mean, why was i exercising during pregnancy anyways??? i mean, am i that selfish that i needed to stay in shape?! what the f*ck was i thinking?!?!? and why didn't i just simply say in the beginning of the pregnancy to my ob/gyn "can you monitor me closely during this pregnancy too even though my papp-A levels are fine this time, just in case?" OMG if i think about this too much, i go into SEVERE depression so i just can't talk about this anymore. i just want to die. i could've prevented this.
sometimes
sometimes i actually think my son will be ok. and then i feel happy. i think to myself, he might really come out of this ok with minimal issues. but then i remember that he was less than 5 lbs at birth. and that he had not 1 stroke but 2. and i realize that there are full-term, healthy weight babies who had ONE stroke and still didn't come out ok. so how in the world do i think i will be that lucky and my baby will be fine? am i that much in denial? i was emailing back & forth with this one mom whose son was also born 4.5 lbs and he suffered a grade 3 IVH which is pretty severe. he came out completely fine. so i cling onto that as hope. i try to find as many moms out there whose babies had a left MCA stroke and the ones who turned out ok - i reread their blogs & emails over and over again and i pray that my baby will have the same outcome. i compare what noah is doing at 4.5 months old to what their baby did at that age. i look at photos of their babies to see if their hands are fisted at all. i ask their moms "what signs did you see? at what age did the signs appear? what age did they crawl and walk and roll over?" i'm just completely completely obsessed. my mom thinks i have a mental sickness. i probably definitely do. i'm soooooo f*cking depressed, i can't even take it. i hope no one gets mad about this blog. it just seems so negative. i'm a weak mom. i wish i was strong but i just can't deal at all.
as much as i freak out
as much as i freak out, i do love my baby boy very much. sometimes i think i love him too much and that's why i am this terrified. i would do anything for him to be ok. i would give my life, my organs, my anything! i freak out all day long while i'm at work. my a*ss is probably gonna get fired cuz all i do is sit here googling stroke things all day long. and when i'm on the subway ride to & from work, i panic and obsessively think about him. i look around at other people on the subway and wonder if their lives are better than mine, if they have any sh!tty things going on in their lives. would i rather be them? when i sit in work meetings, it's all i think about - my son's stroke. but then i finally get home and see his smile and see him being so happy and see him coo & babble & i hold him & he has that baby smell, i feel ok & even happy and calm even if it's for a passing moment. i feel like, ok maybe things might be ok.
my husband
my husband's a much calmer person than i am. or is it correct to say my husband's a much calmer person than me? i'm an educated person (i'm educated but sometimes i wonder if i'm smart. i think i'm smart & socially aware i guess but i don't know if i'm intelligent) and i am not even sure which is correct. oh, that reminds me - i used to get extremely depressed when i first started googling "neonatal stroke" because i'd find some stories of babies who had this and they lived in the middle of nowhere and their moms looked like, well, they looked like trashy, old, unhealthy messes. like some of them looked totally ghetto or like trailer trash. ok is that really mean? i don't mean it in a mean way, really. and i was so f*cking depressed that i was now in this category. i mean, some of these moms looked like they probably didn't take the best care of themselves or maybe smoked crack or whatever during pregnancy so maybe they caused the injury to happen? that's such an awful thing to say but i really started thinking that maybe strokes happen to babies whose moms are unknowledgeable & unhealthy & i don't know, just not good moms i guess. but anyways, then the more i googled stroke & blogs & support groups, the more i found that this happens to normal moms. it made me feel better to see that most of the moms out there who had kids with special needs were actually smart, young, attractive, NORMAL moms, and because of bad luck this happened to their babies.
i'd email with some of these moms and read their blogs and i'd realize that these moms are very smart and educated and normal. i don't know why i'm talking about this. i think before this happened to my own baby, i would see moms with special needs kids, and the moms always looked like slobs. ok that's mean. but i guess i understand now. i used to look good. really, i did. i used to take care of myself so well. i'd exercise every single damn day, dress nicely, wear nice clothes & shoes & look polished, get waxed, get facials, put on makeup, blowdry my hair, etc. and now, i am a f*cking mess. in the first month, i wouldn't even get up to shower. i would dread showering because that's when i'd stand there crying and freaking out over my baby.
if i did shower, i wouldn't bother washing my hair - for days. why look nice? who cares? my baby has brain damage. my life is over. there's nothing to look forward to anymore. the only reason i shower now is because i'm back at work from maternity leave. i used to look forward to summer, it used to be my favorite season. now i'm dreading the spring/summer because i'm going to have to feel obligated to go out with my kids and not keep them trapped at home. i'm also dreading summer because by then, noah might be showing some serious issues. in a way, i want time to fly by so i will know what he is able to do - will he crawl, walk, talk? will he walk normally without a limp? will he walk before the age of 2-3? but in another way, i don't want time to fly by because right now he's not doing that badly. maybe these first few months will be the only time in his life where he seems completely normal. i mean, yes, he's showing a hand preference but only my husband & i notice it because we know what happened to him. we don't know if his leg is affected because he's not at an age where he's crawling or walking yet. right now he can get away with looking like a completely normal, healthy baby. but when he's a year old, that's when the issues will be noticeable because that's when the big milestones happen, that's when babies become more mobile. i think of weird sh!t, like i imagine a friend or relative saying something like "give me five noah!" and he's unable to do it with his affected hand. so then the friend/relative will be like, "what's wrong with his hand?" or the friend/relative hands him a toy and he's unable to grasp it. and then that's how the friend/relative notices that something's wrong with noah and says, "is his hand ok?" am i crazy? at christmas, i remember my aunt holding him on her lap. he was rubbing his face with his left hand only and i was inwardly freaking out that everyone in the room noticed that something was weird. no one noticed but if i'm freaking out this much already and nothing's severely wrong yet, how will i be when/if things really do start showing?
also, sometimes i see ghetto or trashy moms with like 5 kids who are ALL healthy & normal. what the f*ck. all i wanted were 2 healthy kids. is that too much to ask?
anyways, this post is titled "my husband" so i meant to write about him. i don't know if this is the difference between men & women or dads & moms but from the moms i've spoken to, it seems like they're the main ones suffering from their child's issue. they're the ones panicking & frantic & depressed & on the internet nonstop. i wonder if the dads/husbands do this sh!t. do they go online searching for blogs and stories? do they go on support group boards? i guess they do but not as obsessively as the moms/wives do. my husband is much calmer & much more optimistic & i think in general, he's a much better person than i am.
i am constantly asking him, "what's going to happen to noah? what are we gonna do?? i'm so worried" and my husband just says, "he's going to be fine. he was born a month early, 4.8 lbs, and had 2 strokes. and i think he's doing pretty well for a baby who's gone through all that". and then i say, "but what if he turns out badly like those kids i read about on the hemi-kids support group and all those sites i've been on?" and he says, "what if he doesn't? why do you think of things that haven't happened??? just focus on him right now. those people on those sites are in a support group because their kids turned out bad. if their kids were fine, they wouldn't be on a support group, they'd just move on" and then i'm all, "no, that's not true. i'm on a support group and noah isn't even doing that badly yet. so i don't think it's true that only people with bad outcomes are on those. i don't know what to do anymore. his hand is NOT improving at all despite all the therapy we're doing. what if he just never improves and is in the bad category? what if his hand is non-functional? and then his leg is affected? and then he needs all sorts of help. then what do we do?!?!?" and then my husband's all, "STOP IT. i'm sick of rehashing the same thing everyday. just keep doing what we're doing and we're going to help him get better. we're going to keep doing therapy. we have a neurologist, a rehab doctor, 2 physical therapists. none of them say he looks bad right now. he will come out this ok" and then i'm all, "but what if he comes out bad? what are we going to do?!?! i won't be able to handle it! i can't deal with a special needs child!" and he says, "if he's special needs, then he's special needs. but he's our son and i love him. just love him & take care of him. i have faith that he will be completely fine. i don't want to talk about this anymore". so yeah, this is the conversation that happens every single day. i'm not even exaggerating. i do this to him EVERY single damn day. i think i just need to be reassured or something? i don't know what is wrong with me. i want to believe my husband and think things will be ok. things DO turn out ok for a lot of babies who have strokes. but then i think of those moms who have faith & hope and wait and wait and wait for a miracle that just never happens and then their kid ends up in the "bad" category. and why wouldn't we be one of them? i mean, our luck's been pretty
sh!tty so far so why would we get lucky?? our son may not turn out ok at all. it terrifies me so much that i can't even function. sometimes i can't even breathe. sometimes i think of holding my breath and killing myself. anyways, my point was that my husband is a much better person than i am. i mean, i love our son too, but i just can't handle the thought of him not being normal. my husband though, i mean he doesn't want our baby turning out bad either, but to him i don't think it's the end of the world like it is to me.
actually, sometimes i feel sorry for my husband cuz i can tell he's desperate too. sometimes i think he's in denial when he says things like, "people with good outcomes don't go on support groups". and i can tell he's grasping for straws, is that the correct saying? you know what i mean. he'll say something like, "the outcome is better when the stroke happens in-utero compared to strokes that happen when the baby is like 6 months old". or he'll say "the kids who end up bad are the ones who keep their hand in a tight fist from the beginning. noah doesn't have that". or "he didn't have seizures. the kids who end up bad are the ones who had seizures". although i have a feeling that noah's apnea episodes were really seizures. they just hooked up the EEG too late. don't you love how i just diagnnose this sh!t myself?? i feel sad when my husband says these things because i can tell that he's desperate for noah to be ok too. i'm the crazy panicky one so when i see him worry, i get more worried and more depressed.
i'd email with some of these moms and read their blogs and i'd realize that these moms are very smart and educated and normal. i don't know why i'm talking about this. i think before this happened to my own baby, i would see moms with special needs kids, and the moms always looked like slobs. ok that's mean. but i guess i understand now. i used to look good. really, i did. i used to take care of myself so well. i'd exercise every single damn day, dress nicely, wear nice clothes & shoes & look polished, get waxed, get facials, put on makeup, blowdry my hair, etc. and now, i am a f*cking mess. in the first month, i wouldn't even get up to shower. i would dread showering because that's when i'd stand there crying and freaking out over my baby.
if i did shower, i wouldn't bother washing my hair - for days. why look nice? who cares? my baby has brain damage. my life is over. there's nothing to look forward to anymore. the only reason i shower now is because i'm back at work from maternity leave. i used to look forward to summer, it used to be my favorite season. now i'm dreading the spring/summer because i'm going to have to feel obligated to go out with my kids and not keep them trapped at home. i'm also dreading summer because by then, noah might be showing some serious issues. in a way, i want time to fly by so i will know what he is able to do - will he crawl, walk, talk? will he walk normally without a limp? will he walk before the age of 2-3? but in another way, i don't want time to fly by because right now he's not doing that badly. maybe these first few months will be the only time in his life where he seems completely normal. i mean, yes, he's showing a hand preference but only my husband & i notice it because we know what happened to him. we don't know if his leg is affected because he's not at an age where he's crawling or walking yet. right now he can get away with looking like a completely normal, healthy baby. but when he's a year old, that's when the issues will be noticeable because that's when the big milestones happen, that's when babies become more mobile. i think of weird sh!t, like i imagine a friend or relative saying something like "give me five noah!" and he's unable to do it with his affected hand. so then the friend/relative will be like, "what's wrong with his hand?" or the friend/relative hands him a toy and he's unable to grasp it. and then that's how the friend/relative notices that something's wrong with noah and says, "is his hand ok?" am i crazy? at christmas, i remember my aunt holding him on her lap. he was rubbing his face with his left hand only and i was inwardly freaking out that everyone in the room noticed that something was weird. no one noticed but if i'm freaking out this much already and nothing's severely wrong yet, how will i be when/if things really do start showing?
also, sometimes i see ghetto or trashy moms with like 5 kids who are ALL healthy & normal. what the f*ck. all i wanted were 2 healthy kids. is that too much to ask?
anyways, this post is titled "my husband" so i meant to write about him. i don't know if this is the difference between men & women or dads & moms but from the moms i've spoken to, it seems like they're the main ones suffering from their child's issue. they're the ones panicking & frantic & depressed & on the internet nonstop. i wonder if the dads/husbands do this sh!t. do they go online searching for blogs and stories? do they go on support group boards? i guess they do but not as obsessively as the moms/wives do. my husband is much calmer & much more optimistic & i think in general, he's a much better person than i am.
i am constantly asking him, "what's going to happen to noah? what are we gonna do?? i'm so worried" and my husband just says, "he's going to be fine. he was born a month early, 4.8 lbs, and had 2 strokes. and i think he's doing pretty well for a baby who's gone through all that". and then i say, "but what if he turns out badly like those kids i read about on the hemi-kids support group and all those sites i've been on?" and he says, "what if he doesn't? why do you think of things that haven't happened??? just focus on him right now. those people on those sites are in a support group because their kids turned out bad. if their kids were fine, they wouldn't be on a support group, they'd just move on" and then i'm all, "no, that's not true. i'm on a support group and noah isn't even doing that badly yet. so i don't think it's true that only people with bad outcomes are on those. i don't know what to do anymore. his hand is NOT improving at all despite all the therapy we're doing. what if he just never improves and is in the bad category? what if his hand is non-functional? and then his leg is affected? and then he needs all sorts of help. then what do we do?!?!?" and then my husband's all, "STOP IT. i'm sick of rehashing the same thing everyday. just keep doing what we're doing and we're going to help him get better. we're going to keep doing therapy. we have a neurologist, a rehab doctor, 2 physical therapists. none of them say he looks bad right now. he will come out this ok" and then i'm all, "but what if he comes out bad? what are we going to do?!?! i won't be able to handle it! i can't deal with a special needs child!" and he says, "if he's special needs, then he's special needs. but he's our son and i love him. just love him & take care of him. i have faith that he will be completely fine. i don't want to talk about this anymore". so yeah, this is the conversation that happens every single day. i'm not even exaggerating. i do this to him EVERY single damn day. i think i just need to be reassured or something? i don't know what is wrong with me. i want to believe my husband and think things will be ok. things DO turn out ok for a lot of babies who have strokes. but then i think of those moms who have faith & hope and wait and wait and wait for a miracle that just never happens and then their kid ends up in the "bad" category. and why wouldn't we be one of them? i mean, our luck's been pretty
sh!tty so far so why would we get lucky?? our son may not turn out ok at all. it terrifies me so much that i can't even function. sometimes i can't even breathe. sometimes i think of holding my breath and killing myself. anyways, my point was that my husband is a much better person than i am. i mean, i love our son too, but i just can't handle the thought of him not being normal. my husband though, i mean he doesn't want our baby turning out bad either, but to him i don't think it's the end of the world like it is to me.
actually, sometimes i feel sorry for my husband cuz i can tell he's desperate too. sometimes i think he's in denial when he says things like, "people with good outcomes don't go on support groups". and i can tell he's grasping for straws, is that the correct saying? you know what i mean. he'll say something like, "the outcome is better when the stroke happens in-utero compared to strokes that happen when the baby is like 6 months old". or he'll say "the kids who end up bad are the ones who keep their hand in a tight fist from the beginning. noah doesn't have that". or "he didn't have seizures. the kids who end up bad are the ones who had seizures". although i have a feeling that noah's apnea episodes were really seizures. they just hooked up the EEG too late. don't you love how i just diagnnose this sh!t myself?? i feel sad when my husband says these things because i can tell that he's desperate for noah to be ok too. i'm the crazy panicky one so when i see him worry, i get more worried and more depressed.
my sister
my younger sister is 33 yrs old and she's mentally retarded. i don't know if that's pc, am i supposed to say developmentally disabled? but anyways, in the 80's i don't think there were pc & un-pc ways to say things so i always said mentally retarded. my parents would always tell me not to say that. my dad would say "she is delayed". so since i had a slow sister, i figured i'd get a break and when it came time to have my own kids, they'd be perfect and healthy and normal. but i guess lightening can strike twice. i remember my sister not walking until she was 4, not talking until way after 4, riding the special education yellow schoolbus, not having friends (the friends she had were also special needs & i found a lot of them kind of weird/creepy), i remember her telling us that she'd eat lunch alone at school, i remember her getting made fun of when we were little. i remember this mean boy on our block calling her retard. i remember being embarrassed of her because my friends and classmates thought she was weird. oh god, it freaks me out so badly because i don't want that happening to noah. i just want him to be normal. i don't want his big sister being embarrassed of him. maybe i'm being punished for being mean to my sister too when i was little. i'd be mad at my parents because they'd always treat her like she was fragile, she could do no wrong. with me, they'd yell at me all the time.
anyways, i pray everyday that noah comes out of this normal. i'll find moms whose kids come out normal and it gives me hope & i'll actually feel ok for a few hours. but then i'll read about kids who come out BAD. and then my heart sinks again. i don't want him to be in the "bad" category. i don't know what i will do if he is.
i talk about myself a lot saying "what will i do?" or "i'm miserable". i mean, it's my son's life. i'm selfish, yes i am. i mean, when i first got my son's diagnosis, my first thought was, omg my life is ruined. my life is over.
i mean, it's my son's life though. but if his life is over & ruined, then so is mine because all i have to live for are my kids.
anyways, back to the moms i talk to that i meet online. in the first couple of months, i was too scared to read cp blogs or blogs where the kids don't turn out completely fine. i would only read blogs where the babies came out completely recovered because that's the category i want to be in. i just can't accept that my baby will be "different". i remember reading ellen's lovethatmax blog and i immediately closed it because i didn't want to be in that category.
then as weeks went by, i realized i wasn't going to be in that category because my son did start showing signs. they aren't severe yet or anything but they are definitely concerning, and i'm terrified. i am so so so terrified beyond belief.
anyways, now i read all blogs regardless of the child's outcome. sometimes i even read awful awful blogs, i don't know why. maybe to remind myself that other people may have it worse? i don't know. but the other day i read a blog about a girl who had a great life and then in some diving accident ended up completely paralyzed and couldn't do anything for herself anymore. she ended up starving herself to death because she didn't want to live anymore. it really freaked me out badly. i wish i never read that blog. then the other day i read another blog, i don't know how i come across these- i think i just keep clicking on comments that writers leave on other blogs and somehow i end up on these random blogs. does that make any sense? anyways, this blog was awful - it was about a mom who lost one of her babies to cancer. omg i wish i never read that blog either. i was reading the beginning of it, which maybe started in like 2008 or something? and things were bad, her daughter was dying. and i read a few posts and it was too depressing. so then i clicked on her 2012 posts hoping she was doing better now but she isn't. i wanted a happy ending. i wanted to see her doing ok now but she isn't. i mean, maybe she was doing a little better but she still thought about her baby girl nonstop. ugh it depressed the hell outta me.
so then i sat around thinking, what could be worse than my situation? i thought of john walsh, the guy who does "america's most wanted". now THAT is worse than my situation. his child was murdered. so i googled his story. why do i do this? maybe misery loves company so i just feel better hearing about other people's nightmare stories? anyways, john walsh's son, adam walsh, was 6 yrs old at sears. his mom walked to an aisle to shop for vases so she let adam watch a bunch of older boys playing video games. when she came back to get him, he was gone. the security guard told her that he kicked out the older boys for being too loud and crazy. so adam probably followed along and went outside. no one knows exactly what happened but his head was found 2 weeks later by some fisherman. i think in the late 90's or something, they finally found out who killed him. anyways, my point is, THAT is worse. a child being kidnapped/killed/assaulted? omg i definitely couldn't cope with that.
sometimes, ok this sounds mean, but i'll spot a random stranger, like a really overweight, gross, messy person walking by. and i'll think to myself, "would i rather be him/her? or would i rather have my own life?" this is how bad i think my life is. i compare myself to random people like that and i seriously wonder about the answer. would i rather be myself with a brain injured baby OR would i rather be a gross person who doesn't have a brain-injured baby? i am crazy.
anyways, i pray everyday that noah comes out of this normal. i'll find moms whose kids come out normal and it gives me hope & i'll actually feel ok for a few hours. but then i'll read about kids who come out BAD. and then my heart sinks again. i don't want him to be in the "bad" category. i don't know what i will do if he is.
i talk about myself a lot saying "what will i do?" or "i'm miserable". i mean, it's my son's life. i'm selfish, yes i am. i mean, when i first got my son's diagnosis, my first thought was, omg my life is ruined. my life is over.
i mean, it's my son's life though. but if his life is over & ruined, then so is mine because all i have to live for are my kids.
anyways, back to the moms i talk to that i meet online. in the first couple of months, i was too scared to read cp blogs or blogs where the kids don't turn out completely fine. i would only read blogs where the babies came out completely recovered because that's the category i want to be in. i just can't accept that my baby will be "different". i remember reading ellen's lovethatmax blog and i immediately closed it because i didn't want to be in that category.
then as weeks went by, i realized i wasn't going to be in that category because my son did start showing signs. they aren't severe yet or anything but they are definitely concerning, and i'm terrified. i am so so so terrified beyond belief.
anyways, now i read all blogs regardless of the child's outcome. sometimes i even read awful awful blogs, i don't know why. maybe to remind myself that other people may have it worse? i don't know. but the other day i read a blog about a girl who had a great life and then in some diving accident ended up completely paralyzed and couldn't do anything for herself anymore. she ended up starving herself to death because she didn't want to live anymore. it really freaked me out badly. i wish i never read that blog. then the other day i read another blog, i don't know how i come across these- i think i just keep clicking on comments that writers leave on other blogs and somehow i end up on these random blogs. does that make any sense? anyways, this blog was awful - it was about a mom who lost one of her babies to cancer. omg i wish i never read that blog either. i was reading the beginning of it, which maybe started in like 2008 or something? and things were bad, her daughter was dying. and i read a few posts and it was too depressing. so then i clicked on her 2012 posts hoping she was doing better now but she isn't. i wanted a happy ending. i wanted to see her doing ok now but she isn't. i mean, maybe she was doing a little better but she still thought about her baby girl nonstop. ugh it depressed the hell outta me.
so then i sat around thinking, what could be worse than my situation? i thought of john walsh, the guy who does "america's most wanted". now THAT is worse than my situation. his child was murdered. so i googled his story. why do i do this? maybe misery loves company so i just feel better hearing about other people's nightmare stories? anyways, john walsh's son, adam walsh, was 6 yrs old at sears. his mom walked to an aisle to shop for vases so she let adam watch a bunch of older boys playing video games. when she came back to get him, he was gone. the security guard told her that he kicked out the older boys for being too loud and crazy. so adam probably followed along and went outside. no one knows exactly what happened but his head was found 2 weeks later by some fisherman. i think in the late 90's or something, they finally found out who killed him. anyways, my point is, THAT is worse. a child being kidnapped/killed/assaulted? omg i definitely couldn't cope with that.
sometimes, ok this sounds mean, but i'll spot a random stranger, like a really overweight, gross, messy person walking by. and i'll think to myself, "would i rather be him/her? or would i rather have my own life?" this is how bad i think my life is. i compare myself to random people like that and i seriously wonder about the answer. would i rather be myself with a brain injured baby OR would i rather be a gross person who doesn't have a brain-injured baby? i am crazy.
overwhelming feelings
noah is 4.5 months old. he's doing ok i guess. i mean, i don't know because a baby that age doesn't do much. he's using his left hand more and doesn't have coordination with the right hand. this started about 10-12 weeks ago? i remember first seeing him touch his face with his left hand but not his right. before that, i was in denial and thought that we'd be in the lucky 24% of kids who never showed any signs. then in the weeks after that, i noticed that he was using his left hand to grab his pant leg, his bottle, my hand, etc.
to a random person, this probably doesn't seem like a big deal at all. it's just his hand, right? but no, i KNOW what can happen after this. i've read every blog out there on neonatal stroke. i've been on every support group board about perinatal stroke. it starts off with a hand preference and then other signs start appearing. then before you realize, he's not rolling over or sitting up or crawling or anything. his leg is dragging behind him. he needs a splint, a brace, then he's limping, then he needs botox injections, and constraint therapy, and a taped arm, and then he has no balance when walking and is constantly falling on his face because he lacks that reflex where you throw your arms out in front of you when you are falling. then instead of summer vacations, we're sending him to constraint therapy camp for kids with cp. then our friends feel sorry for us because we're THAT family who was unlucky and got stuck with a special needs kid. they say things like, "i don't know how you do it" and say to their husbands, "we're so lucky that our kids are healthy and normal. imagine if that happened to us. i feel so bad for them". and then we do go on summer vacation to disneyworld or wherever but our son can't walk for long distances and by that age, he's too big for a stroller so now he needs a wheelchair when he can't continue walking. omg this is the sh!t i think of. i think of how my daughter is going to be embarrassed of him. maybe noah will cling onto her during the school years cuz he won't have friends of his own because he's "different". our daughter is already pissed cuz we give noah so much attention so she lashes out on him constantly. will noah just watch his big sister grow up and do normal things? like she'll go to a university & get married & have kids & whatever other normal things everyone does in life. and he'll just sit there and watch her do all these things? oh how f*cking depressing beyond belief.
we got the diagnosis on oct 5th so that means it was right around the holidays. the holidays were tough. i would sit there and show the baby to everyone and they had no idea. they just thought he was premature. but inside i was dying. i would watch the other kids running around playing and wonder if by next thanksgiving/christmas, would my kid be sitting there immobile with a splint on his arm & braces on his legs? will he be drooling due to weak facial muscles? and then i'll have to endure my husband's family saying sh!t like, "poor thing". oh god. i can't deal.
i can't deal with my friends announcing pregnancies or births. i was never like this before. back in the day, i WANTED all of them to hurry up and have kids and stuff cuz when i had my baby, all my friends were just starting to get married. now i'm miserable. i'm not happy for anyone. i don't want to hear about their perfect healthy babies. i don't go on facebook anymore EVER, unless it's to check messages from other stroke moms. i don't go and look at the newsfeed to see photos of my friends' & relatives' perfect healthy babies who didn't end up in NICU.
i hate the person i've become in the past 4.5 months. i'm a bitter, miserable, jealous person. i hate it. i was never like this and now i am.
i just want a normal life. i want to go home and hold my baby and do normal things. i don't want to rush home frantically because i have to do therapy because if i even skip it for one day, he will end up deteriorating. i stare at him looking for signs of abnormalities. even though he appears to be normal, i wonder if he's normal because how is there any way that a baby could suffer such a horrible injury and come out ok? i mean, SOMETHING has to appear sooner or later. i mean, let's say he didn't have very noticeable physical issues. SOMETHING has to happen, right? like will he not talk? will he develop tourette's or autism or something like that? because i read that kids with strokes are at a much higher risk for those things. omg i am so overwhelmed. i am thinking a million things at once.
i get sad when i look at old photos of myself, like our wedding photos. because at that time, i always thought we're gonna get married and then have 2 healthy perfect kids. never ever ever did i imagine something like this ever happening. i get sad when i hear old songs from like 2010 because at that time, i had a healthy daughter and life was good. i was happy. maybe i didn't realize it at the time because when life is good, i take things for granted and don't think about it. at the time, i probably worried about SOMETHING because i'm always worrying about something but life was good. and now it's 2 years later and my life is absolute hell.
to a random person, this probably doesn't seem like a big deal at all. it's just his hand, right? but no, i KNOW what can happen after this. i've read every blog out there on neonatal stroke. i've been on every support group board about perinatal stroke. it starts off with a hand preference and then other signs start appearing. then before you realize, he's not rolling over or sitting up or crawling or anything. his leg is dragging behind him. he needs a splint, a brace, then he's limping, then he needs botox injections, and constraint therapy, and a taped arm, and then he has no balance when walking and is constantly falling on his face because he lacks that reflex where you throw your arms out in front of you when you are falling. then instead of summer vacations, we're sending him to constraint therapy camp for kids with cp. then our friends feel sorry for us because we're THAT family who was unlucky and got stuck with a special needs kid. they say things like, "i don't know how you do it" and say to their husbands, "we're so lucky that our kids are healthy and normal. imagine if that happened to us. i feel so bad for them". and then we do go on summer vacation to disneyworld or wherever but our son can't walk for long distances and by that age, he's too big for a stroller so now he needs a wheelchair when he can't continue walking. omg this is the sh!t i think of. i think of how my daughter is going to be embarrassed of him. maybe noah will cling onto her during the school years cuz he won't have friends of his own because he's "different". our daughter is already pissed cuz we give noah so much attention so she lashes out on him constantly. will noah just watch his big sister grow up and do normal things? like she'll go to a university & get married & have kids & whatever other normal things everyone does in life. and he'll just sit there and watch her do all these things? oh how f*cking depressing beyond belief.
we got the diagnosis on oct 5th so that means it was right around the holidays. the holidays were tough. i would sit there and show the baby to everyone and they had no idea. they just thought he was premature. but inside i was dying. i would watch the other kids running around playing and wonder if by next thanksgiving/christmas, would my kid be sitting there immobile with a splint on his arm & braces on his legs? will he be drooling due to weak facial muscles? and then i'll have to endure my husband's family saying sh!t like, "poor thing". oh god. i can't deal.
i can't deal with my friends announcing pregnancies or births. i was never like this before. back in the day, i WANTED all of them to hurry up and have kids and stuff cuz when i had my baby, all my friends were just starting to get married. now i'm miserable. i'm not happy for anyone. i don't want to hear about their perfect healthy babies. i don't go on facebook anymore EVER, unless it's to check messages from other stroke moms. i don't go and look at the newsfeed to see photos of my friends' & relatives' perfect healthy babies who didn't end up in NICU.
i hate the person i've become in the past 4.5 months. i'm a bitter, miserable, jealous person. i hate it. i was never like this and now i am.
i just want a normal life. i want to go home and hold my baby and do normal things. i don't want to rush home frantically because i have to do therapy because if i even skip it for one day, he will end up deteriorating. i stare at him looking for signs of abnormalities. even though he appears to be normal, i wonder if he's normal because how is there any way that a baby could suffer such a horrible injury and come out ok? i mean, SOMETHING has to appear sooner or later. i mean, let's say he didn't have very noticeable physical issues. SOMETHING has to happen, right? like will he not talk? will he develop tourette's or autism or something like that? because i read that kids with strokes are at a much higher risk for those things. omg i am so overwhelmed. i am thinking a million things at once.
i get sad when i look at old photos of myself, like our wedding photos. because at that time, i always thought we're gonna get married and then have 2 healthy perfect kids. never ever ever did i imagine something like this ever happening. i get sad when i hear old songs from like 2010 because at that time, i had a healthy daughter and life was good. i was happy. maybe i didn't realize it at the time because when life is good, i take things for granted and don't think about it. at the time, i probably worried about SOMETHING because i'm always worrying about something but life was good. and now it's 2 years later and my life is absolute hell.
continuing the nicu story
ok so i think i was being very boring with all the IUGR medical details and everything. i just can't help it. i have to talk about every little detail because i haven't told a single person any of this so i need to write it out. anyways, where was i? we were in the conference room with the neurologist telling us our newborn baby had 2 strokes and he may or may not walk or talk or be able to use his entire right side. i didn't even cry. i think was in shock. my mom was all, "so there's a chance that this may not even be noticeable, right?" and the neurologist said, "yes, i have a 13 month old patient who had the same injury and he's completely fine". then i interrupted with my "or it can be severe, right?" and my mom gave me this look like, what the f is wrong with you. i just don't want to be given false hope. i don't want to think things will be ok and then they're not. i don't remember the questions i asked at the meeting. i think i asked things like, "how big was the stroke?" and the doctor said "significant" and i would say, "did it affect his entire left side?" and the doctor would say "no" but i know it was a big injury and maybe it didn't affect 100% of the left side but it probably affected like 90% or something. i don't know. this is all so depresssing. i am so sad right now even writing about this. so whatever, the neonatalogists and neurologist all were like, "take him home and treat him like a normal baby". i was so pissed cuz they just told us that his brain is damaged but we just forget about it and just treat him all normally. i can't even talk about it cuz it makes me so mad. i don't think i've treated him like a normal baby for even a second.
anyways, we went out to lunch after that meeting - me, my husband, my parents, my in-laws. i was still in shock. i think on our way to the restaurant, i prayed for a car accident that would kill me but everyone else would be ok. i think i even considered opening the car door and throwing myself out onto the highway.
i don't remember much from that week. i remember going to NICU everyday, i remember pumping. i remember looking at the other moms and thinking that their lives were WAY better than mine right now. maybe they had 1 or 2 lb babies but their babies probably didn't suffer a f*cking stroke. their babies would gain weight and be ok. mine would gain weight and still have the brain damage.
when the neonatalogists would do their rounds, they'd kick everyone out of the room for patients' privacy. i remember sitting on the chair googling on my iphone. everything i'd read would point to cerebral palsy. my husband would find the ONE story where the kid would come out unaffected and send it to me. then i'd read that 76% of kids who suffer strokes end up with cerebral palsy. there is no way we'll end up being in the 24%. then i'd read another article that says it's 50% of kids who end up with cp. so i'd feel a little better but at the same time, i knew with my already sh!tty luck, how would we get lucky and be in that good 50%?
i don't even remember the day we took noah home. he wasn't in nicu for like 3 months like those 1 pound babies. we took him home within 2 weeks, i think. i don't know why i don't remember too much in those early weeks. i am trying to remember when my psychosis really started. maybe it started immediately in nicu? no, i think i was still too shocked. i think we brought him home and that's when reality really hit me - we have a brain-damaged baby.
ok i do remember making friends with the front desk lady at nicu. she was a nice lady. she was telling me something about how some moms don't end up wanting their babies after they end up in nicu & go through all this hell. and i was like, "oh my god, really?" but the truth is, i kind of felt the same at that moment. i will never ever admit this to anyone and i'm only writing it on this blog so whoever is reading this may think i'm a horrible awful person and maybe i am. i am kind of selfish in general so whatever but i was TERRIFIED and i don't know - i'd cry nonstop for him and feel so heartbroken seeing him with the tubes and needles and EEG and etc. so i know that i did love him and care for him. but at the same time, i don't know, i didn't want to deal with this horrible horrible awful miserable situation. i just wanted to run away. i felt like it was hopeless. maybe it was post-partum depression? there's no excuse to feel like you don't want your baby. i know that. but at that moment it was too much. i really just wanted a way out. i wanted to disappear into the ground. i couldn't handle it.
when i brought him home, i would have awful awful thoughts. i can't believe i'm even writing this out. but like i'd constantly think of killing myself. i'd think, well i don't want to leave my husband with such a burden (like him having to bring the baby to PT/OT/dr appts) so maybe i will take noah with me and kill both of us. how would i do it though? maybe i'd go and jump off of the george washington bridge? i'd take a taxi there and pretend like i was going for a walk with my baby, but then i'd climb over the railing and throw ourselves in the water. i even googled, "george washington bride suicide" to make sure there wasn't an anti-suicide railing thing there that deters crazy people. i even googled "does anyone survive suicide jumps off the george washington bridge?" because with my horrible luck, i'd jump off and survive paralyzed or some sh!t like that. and then i also thought, will this end up in the local newspaper? because i don't want to embarrass my family, especially my parents. so then i thought, maybe i'll buy a plane ticket and fly to san francisco and jump off of the golden gate bridge instead cuz if that ended up in the local paper, at least it was far from where my parents live. i was crazy, i still am. i'd sit around at home all day long ignoring my toddler and being a horrible mom. i'd sit there thinking of a quick solution. i mean, i even thought, maybe i'll drown him or suffocate him and say it was SIDS? i don't mean to scare anyone with this. i'm just writing out all my true thoughts. i don't have these thoughts of harming my baby anymore 4.5 months later. really i don't. i love him very much. i get hopeless and sad but i honestly don't have those thoughts of harming him at all, and sometimes i can't believe i even used to. however, i still have thoughts though of jumping off a bridge if things don't get better. it's the only way i can go on. i have to tell myself ,well if things get really really bad, then there's a solution - just go and jump off a bridge. so i tell myself there IS a solution and that's how i move on.
ok i just reread my post from yesterday and i'm kind of freaking out over the whole paragraph i wrote about that horrible traumatic phonecall. i think i'm in serious denial that my baby had a stroke. i feel like the MRI is a mistake. maybe it was temporary swelling that went away on its own. but i know it isn't a mistake because the truth is, he is showing some issues now.
anyways, this whole blog is going to be scatterbrained and all over the place because i am thinking so many things at once. sometimes i have this fantasy that i die of a heartattack due to this horrible overwhelming stress and i get out of this misery. and then it'll be perfect because i won't have to go and jump off a bridge because i REALLY REALLY do not want to do that. jumping off a bridge for thousands of feet just sounds really painful and awful and i'd be so embarrassed if i survived it. if i was the 1/4000 whose baby had a stroke, then why wouldn't i be the 1/100000 who survives a jump off of the george washington bridge? omg and then my husband & kids would hate me cuz they'd have to take care of my a*ss for the rest of their lives. most likely, even if things do get horrible, i will never jump off that bridge. actually, maybe i will if i am THAT miserable and get really really drunk first. ok so that'll be my solution. when things get really bad, i will drink A LOT and then go to the bridge. then i'll be brave enough to do it AND at the same time, it won't hurt as much because i'll be numb from the drunkenness. ok i really need to stop talking about crazy sh!t like this. i'm scared that someone will freak out and trace my IP address and find out which computer i'm at and call the police or someone to come get me because i'm talking about crazy sh!t like suicide.
anyways, we went out to lunch after that meeting - me, my husband, my parents, my in-laws. i was still in shock. i think on our way to the restaurant, i prayed for a car accident that would kill me but everyone else would be ok. i think i even considered opening the car door and throwing myself out onto the highway.
i don't remember much from that week. i remember going to NICU everyday, i remember pumping. i remember looking at the other moms and thinking that their lives were WAY better than mine right now. maybe they had 1 or 2 lb babies but their babies probably didn't suffer a f*cking stroke. their babies would gain weight and be ok. mine would gain weight and still have the brain damage.
when the neonatalogists would do their rounds, they'd kick everyone out of the room for patients' privacy. i remember sitting on the chair googling on my iphone. everything i'd read would point to cerebral palsy. my husband would find the ONE story where the kid would come out unaffected and send it to me. then i'd read that 76% of kids who suffer strokes end up with cerebral palsy. there is no way we'll end up being in the 24%. then i'd read another article that says it's 50% of kids who end up with cp. so i'd feel a little better but at the same time, i knew with my already sh!tty luck, how would we get lucky and be in that good 50%?
i don't even remember the day we took noah home. he wasn't in nicu for like 3 months like those 1 pound babies. we took him home within 2 weeks, i think. i don't know why i don't remember too much in those early weeks. i am trying to remember when my psychosis really started. maybe it started immediately in nicu? no, i think i was still too shocked. i think we brought him home and that's when reality really hit me - we have a brain-damaged baby.
ok i do remember making friends with the front desk lady at nicu. she was a nice lady. she was telling me something about how some moms don't end up wanting their babies after they end up in nicu & go through all this hell. and i was like, "oh my god, really?" but the truth is, i kind of felt the same at that moment. i will never ever admit this to anyone and i'm only writing it on this blog so whoever is reading this may think i'm a horrible awful person and maybe i am. i am kind of selfish in general so whatever but i was TERRIFIED and i don't know - i'd cry nonstop for him and feel so heartbroken seeing him with the tubes and needles and EEG and etc. so i know that i did love him and care for him. but at the same time, i don't know, i didn't want to deal with this horrible horrible awful miserable situation. i just wanted to run away. i felt like it was hopeless. maybe it was post-partum depression? there's no excuse to feel like you don't want your baby. i know that. but at that moment it was too much. i really just wanted a way out. i wanted to disappear into the ground. i couldn't handle it.
when i brought him home, i would have awful awful thoughts. i can't believe i'm even writing this out. but like i'd constantly think of killing myself. i'd think, well i don't want to leave my husband with such a burden (like him having to bring the baby to PT/OT/dr appts) so maybe i will take noah with me and kill both of us. how would i do it though? maybe i'd go and jump off of the george washington bridge? i'd take a taxi there and pretend like i was going for a walk with my baby, but then i'd climb over the railing and throw ourselves in the water. i even googled, "george washington bride suicide" to make sure there wasn't an anti-suicide railing thing there that deters crazy people. i even googled "does anyone survive suicide jumps off the george washington bridge?" because with my horrible luck, i'd jump off and survive paralyzed or some sh!t like that. and then i also thought, will this end up in the local newspaper? because i don't want to embarrass my family, especially my parents. so then i thought, maybe i'll buy a plane ticket and fly to san francisco and jump off of the golden gate bridge instead cuz if that ended up in the local paper, at least it was far from where my parents live. i was crazy, i still am. i'd sit around at home all day long ignoring my toddler and being a horrible mom. i'd sit there thinking of a quick solution. i mean, i even thought, maybe i'll drown him or suffocate him and say it was SIDS? i don't mean to scare anyone with this. i'm just writing out all my true thoughts. i don't have these thoughts of harming my baby anymore 4.5 months later. really i don't. i love him very much. i get hopeless and sad but i honestly don't have those thoughts of harming him at all, and sometimes i can't believe i even used to. however, i still have thoughts though of jumping off a bridge if things don't get better. it's the only way i can go on. i have to tell myself ,well if things get really really bad, then there's a solution - just go and jump off a bridge. so i tell myself there IS a solution and that's how i move on.
ok i just reread my post from yesterday and i'm kind of freaking out over the whole paragraph i wrote about that horrible traumatic phonecall. i think i'm in serious denial that my baby had a stroke. i feel like the MRI is a mistake. maybe it was temporary swelling that went away on its own. but i know it isn't a mistake because the truth is, he is showing some issues now.
anyways, this whole blog is going to be scatterbrained and all over the place because i am thinking so many things at once. sometimes i have this fantasy that i die of a heartattack due to this horrible overwhelming stress and i get out of this misery. and then it'll be perfect because i won't have to go and jump off a bridge because i REALLY REALLY do not want to do that. jumping off a bridge for thousands of feet just sounds really painful and awful and i'd be so embarrassed if i survived it. if i was the 1/4000 whose baby had a stroke, then why wouldn't i be the 1/100000 who survives a jump off of the george washington bridge? omg and then my husband & kids would hate me cuz they'd have to take care of my a*ss for the rest of their lives. most likely, even if things do get horrible, i will never jump off that bridge. actually, maybe i will if i am THAT miserable and get really really drunk first. ok so that'll be my solution. when things get really bad, i will drink A LOT and then go to the bridge. then i'll be brave enough to do it AND at the same time, it won't hurt as much because i'll be numb from the drunkenness. ok i really need to stop talking about crazy sh!t like this. i'm scared that someone will freak out and trace my IP address and find out which computer i'm at and call the police or someone to come get me because i'm talking about crazy sh!t like suicide.
Monday, February 20, 2012
i wonder if i will keep this up
even as i'm typing this story, i'm in denial that my life is sucking this much. this blog is about my baby boy's brain injury.
i wonder if i'll just write for a few weeks and then stop? i have no idea. i had to create a new email address to create this blog because i don't want friends & family finding this if they google my real name or real email address. i'm starting this blog because i'm going crazy lately. actually, i've been going crazy since sept 29th, 2011. that's when my life ended. i'm alive now but not really. i just kind of get through my days but i really just want to die, i feel this way every single day. you see, my son was born on sept 29, 2011. he's an adorable little baby. by looking at him, you would never know anything's wrong at all. things didn't start off well for him. actually, things started off really f*cking horribly. it was a nightmare and still is. the even crazier thing is - no one knows about it. i mean, my husband knows of course & my parents know & my parents-in-law know. but i haven't told anyone else, not friends or coworkers or other relatives. why? because i don't want pity. i don't want them secretly thinking "i'm glad that didn't happen to me". and in case, just in case, that we are one of the "lucky" ones who gets a miracle and our baby turns out ok, and no one notices anything, and then i won't have to explain what happened and have to relive the trauma/nightmare.
i started writing this blog today because i was inspired by reading other moms' blogs. and also because i'm really losing my mind lately, like really really badly. and i have no one to talk to and it's my fault because i am the crazy one who decided not to tell anyone. all my friends think my baby was in NICU because he was a month early and had some temporary breathing problems. they have no idea what really happened after that. i hope i don't cry as i write about it. today during lunchtime i cried again because i was once again feeling sorry for myself as i always do lately, it's stupid but i can't help it. i'm so weak. i'm a weak mom. if i could choose to die right now, i would definitely say yes.
so my pregnancy was going fine and then at my 35 week ultrasound, i expected to go in and find out that the baby was either upside down or breech. my biggest worry was needing a c-section but i don't know why cuz my daughter's birth was vaginal and it took almost 4 hours and it was traumatic. anyways, my life started sucking on september 22nd. i went in for a routine ultrasound and found out my baby was measuring behind, he had IUGR, intrauterine growth restriction. it was due to a placental issue & they had to induce quickly. i panicked but little did i know that IUGR would be the LEAST of my problems. i'll write more later, gotta go.
ok so anyways, the doctor said we could wait a few more days until i get induced as long as the non-stress tests were coming back ok. i FREAKED out over this whole IUGR. i rushed home and googled immediately. i found pretty scary stories about IUGR kids ending up developmentally delayed and how some don't grow properly. some of them are wearing size 0-3 month clothing at their 1 year birthday. i'm not even making this up. then i started reading about russell silver syndrome which is a really severe kind of IUGR, it's like dwarfism. anyways, i was incredibly depressed and having a panic attack. i didn't sleep at all.
so fast forward a few days and i'm getting a non-stress test and they see a deceleration. then they check my fluid and it's low. so i'm suddenly rushed to labor & delivery. i'm sobbing like crazy. the doctor delivering me that day is weird & abrasive. i asked him if IUGR babies come out healthy but he's all, "well, some are mentally retarded" and i'm seriously panicking to death. i get induced and the labor is intense and quick and VERY painful. i'm having a panic attack the entire time because i don't know if i'm going to give birth to a mentally retarded baby or what. the baby arrives at 11:04pm on sept 29th. he's only 4 lbs 7.6 oz. he's tiny, so skinny. it's so depressing. but his apgars were 9/9. seeing such a tiny baby made me incredibly depressed because when you see a baby that small, you feel like he will NEVER EVER get bigger and he'll stay that size forever. but anyways, the fact that he was alert and had good apgars made me feel a little better. he breastfeeds right away and is acting like a normal healthy baby but he goes to the special care nursery due to his small size. he's doing well the next day too & we are told that we can take him home the same day i'm discharged. at this point, i'm still panicking and freaking out over this whole IUGR. i'm constantly asking the neonatalogist if he will be slow or really behind with motor skills, etc. little did i know what was going to happen & that was the last day before my world ended.
on the night of sept 30th, i am breastfeeding my baby and the nurse is helping me. she suddenly starts staring at the monitor and grabs him from me. she tells me that he stopped breathing for a few seconds. another nurse comes over and they're both staring at the monitor. so they both watch me breastfeeding again. he stops breathing again. they take him from me and pat him a little on the back and stimulate him to get him to breathe again. this ENTIRE time, i have NO idea how serious this is. i am clueless and naive, and i just assume he's doing that because he's a little premature and small.
on the morning of oct 1st, the neonatologist comes into my room and says they have to take my son to NICU because during the night he had several episodes of apnea (where he'd "forget" to breathe). i started crying like crazy and i followed him to NICU. still, i had NO idea how serious all of this was. i truly believed this was all just precautionary. so the next couple of days, they had him hooked up to needles, IV's, a cpap, nasal canula, etc. omg just typing out "nasal canula" is freaking me out. i think i kind of blocked all of this out for a while. anyways, they tell me they can't discharge him until he goes for 5 days without those apnea episodes. the next day, the neonatalogists ask me if i was definitely 36 weeks when he was born & i say yes i'm pretty sure. the doctor was all, "well, maybe your due date was off and he's younger than he is. he may be immature. but you are pretty sure you were 36 weeks?" later i would find out why they kept asking me this.
NICU was hell. i would look around at some moms who seemed so calm and i was impressed by them. i wanted to desperately ask them what was wrong with their baby but i knew i couldn't. i just wanted someone to talk to so badly. and remember, i still don't even think anything is truly wrong with my baby yet. i was confused when the doctors told me they were going to do a lumbar puncture and that i'd have to give them permission. i had no idea why they were doing so many tests. all i thought was, he's a premature baby and his breathing issues will resolve. let us go home! that day they had done a CT scan. the doctors were asking me things like, "did you feel any change in the baby's movement during the pregnancy?" and i said, no not that i know of. i was still panicking over the whole IUGR the entire time, asking if i did anything to cause it.
anyways, so oct 4th is when my nightmare started. i remember these dates, i don't know why. maybe because i'm traumatized. sometimes i think i really have post traumatic stress disorder for real. i came home from NICU that afternoon on oct 4th and that day, the doctors told me they were going to do an MRI on my baby. maybe i'm a f*cking moron but AGAIN, i thought it was an overly precautionary thing they were doing. so anyways, at like 5pm, i'm in my bedroom googling "IUGR success stories" and reading about kids who thrive after being growth-restricted. i also found horror stories too though. so i finally decide to call NICU and ask how the MRI went, expecting it to be fine. i will never EVER forget this phone conversation for as long as i live. the doctor tells me, "i think you and your husband should come back in so we can speak to you in person". my heart sank. i don't know how i didn't faint that very second. i was frantic. i'm asking, "why?! what happened??? what did the MRI show? please tell me" and the doctor says, "i really think you and your husband need to come in to discuss this with the neurologist" and i'm BEGGING her to just tell me SOMETHING. she says, "well we are concerned because we found an area in his brain with low blood flow". i ALMOST DIED. my heart was racing. i started freaking out and saying, "WHAT?! where?!? what are you talking about? is that brain damage? where in the brain?!" and the doctor said, "well, the CT scan showed a brain that the radiologist thought belonged to a much younger baby. so that's why we did the MRI. and that showed that there was an area of low blood flow in the left side of the brain. we don't know if it's a bleed or a stroke but i really think you and your husband should come in tomorrow morning to talk to the neurologist because he'll explain everything better" and i was yelling, "OH MY GOD. STROKE or BLEED?!?!? is it fixable??? WHAT DOES THE LEFT SIDE OF THE BRAIN CONTROL???" and she calmly said, "it controls the left side of the body. but again, you and your husband really need to come in to sit down with the pediatric neurologist". immediately, i started panicking and dialing my husband and my mom and my mother-in-law and telling them about low blood flow in the left part of the brain. i don't even remember what the f*ck i was blurting out. then i started googling sh!t online and everything pointed to cerebral palsy.
i did not sleep for a minute that night. i remember calling my mom at 3am because i was having a severe panic attack.
on oct 5th at noon was our meeting with the neurologist. we went with my parents, my parents-in-law, my husband, and i. i knew it wasn't going to be good because 2 social workers came in with us. the neonatologists & her team, and the neurologist were all there. we sat in a conference room. i was expecting the neurologist to show us the MRI scan but he didn't. he probably would have if i asked but i was too scared to. i could tell he was being careful with the way he worded things because of me. i was being insane. he said, "there was an area of low blood flow to his brain. it appears to be a stroke. one happened about 3-4 weeks before birth. the other injury happened 3-7 days before birth. the good thing is he is not having seizures. and the injuries were in the same location and on only one side of his brain". he said, "i THINK he will walk. i THINK he will talk. i don't know if he will but i THINK he will do those things. i THINK his intelligence will be normal. he will most likely have right side motor issues. it could be severe or it could be mild. it could be a slight limp or it could be a non-functional right side". i said, "so this is brain damage" and the doctor said, "well, that part of the brain was injured so yes, it is damaged". i said, "so he's going to get cerebral palsy" and the doctor said, "cerebral palsy could just be a sticky ankle. it could be that he's very left-handed". that was his way of saying yes, your son will most likely get cerebral palsy.
ok i'll write more later.
i wonder if i'll just write for a few weeks and then stop? i have no idea. i had to create a new email address to create this blog because i don't want friends & family finding this if they google my real name or real email address. i'm starting this blog because i'm going crazy lately. actually, i've been going crazy since sept 29th, 2011. that's when my life ended. i'm alive now but not really. i just kind of get through my days but i really just want to die, i feel this way every single day. you see, my son was born on sept 29, 2011. he's an adorable little baby. by looking at him, you would never know anything's wrong at all. things didn't start off well for him. actually, things started off really f*cking horribly. it was a nightmare and still is. the even crazier thing is - no one knows about it. i mean, my husband knows of course & my parents know & my parents-in-law know. but i haven't told anyone else, not friends or coworkers or other relatives. why? because i don't want pity. i don't want them secretly thinking "i'm glad that didn't happen to me". and in case, just in case, that we are one of the "lucky" ones who gets a miracle and our baby turns out ok, and no one notices anything, and then i won't have to explain what happened and have to relive the trauma/nightmare.
i started writing this blog today because i was inspired by reading other moms' blogs. and also because i'm really losing my mind lately, like really really badly. and i have no one to talk to and it's my fault because i am the crazy one who decided not to tell anyone. all my friends think my baby was in NICU because he was a month early and had some temporary breathing problems. they have no idea what really happened after that. i hope i don't cry as i write about it. today during lunchtime i cried again because i was once again feeling sorry for myself as i always do lately, it's stupid but i can't help it. i'm so weak. i'm a weak mom. if i could choose to die right now, i would definitely say yes.
so my pregnancy was going fine and then at my 35 week ultrasound, i expected to go in and find out that the baby was either upside down or breech. my biggest worry was needing a c-section but i don't know why cuz my daughter's birth was vaginal and it took almost 4 hours and it was traumatic. anyways, my life started sucking on september 22nd. i went in for a routine ultrasound and found out my baby was measuring behind, he had IUGR, intrauterine growth restriction. it was due to a placental issue & they had to induce quickly. i panicked but little did i know that IUGR would be the LEAST of my problems. i'll write more later, gotta go.
ok so anyways, the doctor said we could wait a few more days until i get induced as long as the non-stress tests were coming back ok. i FREAKED out over this whole IUGR. i rushed home and googled immediately. i found pretty scary stories about IUGR kids ending up developmentally delayed and how some don't grow properly. some of them are wearing size 0-3 month clothing at their 1 year birthday. i'm not even making this up. then i started reading about russell silver syndrome which is a really severe kind of IUGR, it's like dwarfism. anyways, i was incredibly depressed and having a panic attack. i didn't sleep at all.
so fast forward a few days and i'm getting a non-stress test and they see a deceleration. then they check my fluid and it's low. so i'm suddenly rushed to labor & delivery. i'm sobbing like crazy. the doctor delivering me that day is weird & abrasive. i asked him if IUGR babies come out healthy but he's all, "well, some are mentally retarded" and i'm seriously panicking to death. i get induced and the labor is intense and quick and VERY painful. i'm having a panic attack the entire time because i don't know if i'm going to give birth to a mentally retarded baby or what. the baby arrives at 11:04pm on sept 29th. he's only 4 lbs 7.6 oz. he's tiny, so skinny. it's so depressing. but his apgars were 9/9. seeing such a tiny baby made me incredibly depressed because when you see a baby that small, you feel like he will NEVER EVER get bigger and he'll stay that size forever. but anyways, the fact that he was alert and had good apgars made me feel a little better. he breastfeeds right away and is acting like a normal healthy baby but he goes to the special care nursery due to his small size. he's doing well the next day too & we are told that we can take him home the same day i'm discharged. at this point, i'm still panicking and freaking out over this whole IUGR. i'm constantly asking the neonatalogist if he will be slow or really behind with motor skills, etc. little did i know what was going to happen & that was the last day before my world ended.
on the night of sept 30th, i am breastfeeding my baby and the nurse is helping me. she suddenly starts staring at the monitor and grabs him from me. she tells me that he stopped breathing for a few seconds. another nurse comes over and they're both staring at the monitor. so they both watch me breastfeeding again. he stops breathing again. they take him from me and pat him a little on the back and stimulate him to get him to breathe again. this ENTIRE time, i have NO idea how serious this is. i am clueless and naive, and i just assume he's doing that because he's a little premature and small.
on the morning of oct 1st, the neonatologist comes into my room and says they have to take my son to NICU because during the night he had several episodes of apnea (where he'd "forget" to breathe). i started crying like crazy and i followed him to NICU. still, i had NO idea how serious all of this was. i truly believed this was all just precautionary. so the next couple of days, they had him hooked up to needles, IV's, a cpap, nasal canula, etc. omg just typing out "nasal canula" is freaking me out. i think i kind of blocked all of this out for a while. anyways, they tell me they can't discharge him until he goes for 5 days without those apnea episodes. the next day, the neonatalogists ask me if i was definitely 36 weeks when he was born & i say yes i'm pretty sure. the doctor was all, "well, maybe your due date was off and he's younger than he is. he may be immature. but you are pretty sure you were 36 weeks?" later i would find out why they kept asking me this.
NICU was hell. i would look around at some moms who seemed so calm and i was impressed by them. i wanted to desperately ask them what was wrong with their baby but i knew i couldn't. i just wanted someone to talk to so badly. and remember, i still don't even think anything is truly wrong with my baby yet. i was confused when the doctors told me they were going to do a lumbar puncture and that i'd have to give them permission. i had no idea why they were doing so many tests. all i thought was, he's a premature baby and his breathing issues will resolve. let us go home! that day they had done a CT scan. the doctors were asking me things like, "did you feel any change in the baby's movement during the pregnancy?" and i said, no not that i know of. i was still panicking over the whole IUGR the entire time, asking if i did anything to cause it.
anyways, so oct 4th is when my nightmare started. i remember these dates, i don't know why. maybe because i'm traumatized. sometimes i think i really have post traumatic stress disorder for real. i came home from NICU that afternoon on oct 4th and that day, the doctors told me they were going to do an MRI on my baby. maybe i'm a f*cking moron but AGAIN, i thought it was an overly precautionary thing they were doing. so anyways, at like 5pm, i'm in my bedroom googling "IUGR success stories" and reading about kids who thrive after being growth-restricted. i also found horror stories too though. so i finally decide to call NICU and ask how the MRI went, expecting it to be fine. i will never EVER forget this phone conversation for as long as i live. the doctor tells me, "i think you and your husband should come back in so we can speak to you in person". my heart sank. i don't know how i didn't faint that very second. i was frantic. i'm asking, "why?! what happened??? what did the MRI show? please tell me" and the doctor says, "i really think you and your husband need to come in to discuss this with the neurologist" and i'm BEGGING her to just tell me SOMETHING. she says, "well we are concerned because we found an area in his brain with low blood flow". i ALMOST DIED. my heart was racing. i started freaking out and saying, "WHAT?! where?!? what are you talking about? is that brain damage? where in the brain?!" and the doctor said, "well, the CT scan showed a brain that the radiologist thought belonged to a much younger baby. so that's why we did the MRI. and that showed that there was an area of low blood flow in the left side of the brain. we don't know if it's a bleed or a stroke but i really think you and your husband should come in tomorrow morning to talk to the neurologist because he'll explain everything better" and i was yelling, "OH MY GOD. STROKE or BLEED?!?!? is it fixable??? WHAT DOES THE LEFT SIDE OF THE BRAIN CONTROL???" and she calmly said, "it controls the left side of the body. but again, you and your husband really need to come in to sit down with the pediatric neurologist". immediately, i started panicking and dialing my husband and my mom and my mother-in-law and telling them about low blood flow in the left part of the brain. i don't even remember what the f*ck i was blurting out. then i started googling sh!t online and everything pointed to cerebral palsy.
i did not sleep for a minute that night. i remember calling my mom at 3am because i was having a severe panic attack.
on oct 5th at noon was our meeting with the neurologist. we went with my parents, my parents-in-law, my husband, and i. i knew it wasn't going to be good because 2 social workers came in with us. the neonatologists & her team, and the neurologist were all there. we sat in a conference room. i was expecting the neurologist to show us the MRI scan but he didn't. he probably would have if i asked but i was too scared to. i could tell he was being careful with the way he worded things because of me. i was being insane. he said, "there was an area of low blood flow to his brain. it appears to be a stroke. one happened about 3-4 weeks before birth. the other injury happened 3-7 days before birth. the good thing is he is not having seizures. and the injuries were in the same location and on only one side of his brain". he said, "i THINK he will walk. i THINK he will talk. i don't know if he will but i THINK he will do those things. i THINK his intelligence will be normal. he will most likely have right side motor issues. it could be severe or it could be mild. it could be a slight limp or it could be a non-functional right side". i said, "so this is brain damage" and the doctor said, "well, that part of the brain was injured so yes, it is damaged". i said, "so he's going to get cerebral palsy" and the doctor said, "cerebral palsy could just be a sticky ankle. it could be that he's very left-handed". that was his way of saying yes, your son will most likely get cerebral palsy.
ok i'll write more later.
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