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.