today is the day after my son died. today is the second day of my life sentence. this fucking prison of grief that has no escape. it will never change. my baby will never come back. i will never see him again.
today i find myself in a place that has no description. to try to describe how i feel seems stupid and pointless. everything seems pointless. my baby is dead. there are no other words needed, and no words could do justice to this.
today i am forced to think about things that no one should ever have to. today i have to face the cruel logistics of my son dying. my parents are taking care of all the arrangements. they brought over a map of our family cemetery. we had to pick out our burial plots. i'm only fucking 25 years old and i'm deciding where i want to be buried. do i want to be directly behind my parents? do i want to be on the end, or should my husband be on the end. i want to be next to Charlie. where is the best place to bury my son so that i can one day be buried next to him?
today i have to decide if i want my son buried or cremated. these are just fancy terms to distract you from the reality of what really happens. do i want my precious baby's flesh to burn in fire, or do i want his body to slowly decompose in the cold ground? i've heard horror stories of crematories just taking out any ashes and giving them to you. in the end, we wanted our son buried. i couldn't bear the thought of burning my baby's body.
today i had to decide how to dress my baby for his coffin. i always thought i would be picking out his coming home outfit, and instead i'm picking out his burial outfit. i had to go through the bag of clothes that i had washed for him in preparation for him coming home. they were all so tiny, but when my husband and i looked at them they all would have been huge on Charlie. we decided to just have him in a onesie and swaddled in a blanket. nothing special. i didn't know what else to do.
today i had to decide if i wanted anything put in Charlie's coffin with him. we put in the ornament that we had given him for christmas that i had written his name on, and we put in the comb that my husband so meticulously used to comb his son's hair every day.
today i had to decide if i wanted an obituary for my son. we decided no.
today i had to decide if i wanted to bury my son now while the ground is frozen, or if we wanted to wait until spring when the ground would be thawed. we decided now.
today i had to decide when to have my son's burial.
today i had to decide if i wanted an autopsy on my son. we said no.
today i had to decide if i wanted to give the gift of life to another baby. the hospital called and apologized for the circumstances, but time was of the essence and they wanted to know if we were willing to donate a valve from Charlie's heart. i immediately said no. i was so shocked by the phone call. it was the last thing i was expecting. my first thought was of someone cutting open my baby and taking his heart out. and when i pictured this in my mind i cringed and almost vomited. and then i thought of someone being happy and rejoicing in my son's death because it meant that their child might have a chance at life. i told the woman that i was very sorry but that i just couldn't do that to my son. i couldn't have him cut open. and now three years later, i still don't know if i made the right choice. i think of a family being thankful that my son died and i want to die. but i also think that if there was a way that someone could have saved Charlie and they chose not to, i would have wished them a cold miserable death. i am sorry every day that i could not give this gift to another baby. i am sorry that i was so selfish, but i still cannot bear the thought of my baby's lifeless body being opened. i wish that he had had a voice and could have told me what he wanted. i will never no if i made the right decision for him.
there is no greater tragedy than to have your child die. but to have to make these decisions in the aftermath is nearly equally as tragic. you make decisions that you will later regret. you don't know what to do. there is nothing in this world that could have prepared you for these decisions. i wish i could have been better. i wish my son was alive and with me. i wish someone would bury me right along with him, because without him, i have no life left.
Sunday, June 19, 2011
Tuesday, June 14, 2011
Monday, June 13, 2011
January 2008: The Beginning Of The End
today is a very bad day. Charlie is doing horribly. it's a week day, but Jay's boss has been really good about giving him as much time off as he needs, so he met me up here today in the early afternoon.
Charlie is just getting worse. they have been having to raise the pressures on his vent continuously. they maxed out the one vent settings, so they had to switch him back to the vent he was initially on when he was born...the one that puffs something like 100 little breaths per minute. we're sliding back so fast i can't catch my footing. his jaundice is horrible. his color is awful and you can see it in every part of his body. his abdomen has been swollen for days now, and is only getting worse. a week or so ago they had to "tap" it. it was where they made a small puncture to drain off the excess fluid that his liver is secreting. that time it worked. they drained off about three times as much fluid as they initially wanted to because it just kept seeping out. early this morning they decided they wanted to try to tap his abdomen again. i had to leave the room because it was a sterile procedure. i went to the waiting room, and the doctor came out just a few short minutes later and said that it didn't work. she tried puncturing his abdomen, and nothing came out. she doesn't know why. i went back in to be with him. the place that she had punctured was still leaking a little, so they ended up putting a bag on it to collect whatever came out. and it just kept leaking, and leaking. everything from yellow fluid, to blood was being collected in that bag.
when jay got to the NICU, he was shocked to see how awful our baby looked. he was upset. i had barely eaten anything all day so he convinced me to go out to eat with him. we went, and it is something i will always blame myself for. when we got back, they told us that Charlie had extubated himself again, and so they had to re-intubate him. they put in a bigger tube since he had outgrown the one they originally put in when he was born. the vent pressures were still the highest they'd ever been. would he have pulled his tube out if i had been there? i watched him all day, every day...would i have been able to stop him from pulling at his tube?
jay and i sat with our son the rest of the day. by the time dinner time came around, they told us that if his pressures continued at this level, or continued to rise, he was not going to survive the night. he was almost at the maximum pressure for the new vent, and they had nowhere else to go from there.
we went to the hospital cafeteria to eat dinner. i couldn't even choke down a few pieces of fruit. i cried through the whole meal. and then i called my mom and told her that Charlie, her first grandchild, my first baby, our only son, would probably not make it through the night.
Charlie is just getting worse. they have been having to raise the pressures on his vent continuously. they maxed out the one vent settings, so they had to switch him back to the vent he was initially on when he was born...the one that puffs something like 100 little breaths per minute. we're sliding back so fast i can't catch my footing. his jaundice is horrible. his color is awful and you can see it in every part of his body. his abdomen has been swollen for days now, and is only getting worse. a week or so ago they had to "tap" it. it was where they made a small puncture to drain off the excess fluid that his liver is secreting. that time it worked. they drained off about three times as much fluid as they initially wanted to because it just kept seeping out. early this morning they decided they wanted to try to tap his abdomen again. i had to leave the room because it was a sterile procedure. i went to the waiting room, and the doctor came out just a few short minutes later and said that it didn't work. she tried puncturing his abdomen, and nothing came out. she doesn't know why. i went back in to be with him. the place that she had punctured was still leaking a little, so they ended up putting a bag on it to collect whatever came out. and it just kept leaking, and leaking. everything from yellow fluid, to blood was being collected in that bag.
when jay got to the NICU, he was shocked to see how awful our baby looked. he was upset. i had barely eaten anything all day so he convinced me to go out to eat with him. we went, and it is something i will always blame myself for. when we got back, they told us that Charlie had extubated himself again, and so they had to re-intubate him. they put in a bigger tube since he had outgrown the one they originally put in when he was born. the vent pressures were still the highest they'd ever been. would he have pulled his tube out if i had been there? i watched him all day, every day...would i have been able to stop him from pulling at his tube?
jay and i sat with our son the rest of the day. by the time dinner time came around, they told us that if his pressures continued at this level, or continued to rise, he was not going to survive the night. he was almost at the maximum pressure for the new vent, and they had nowhere else to go from there.
we went to the hospital cafeteria to eat dinner. i couldn't even choke down a few pieces of fruit. i cried through the whole meal. and then i called my mom and told her that Charlie, her first grandchild, my first baby, our only son, would probably not make it through the night.
Wednesday, June 8, 2011
Present Day: Not Hittin' The Bottle
so i need some help...LS (living son for those of you who are new to my awesome blog) will. not. eat. okay, that's an exaggeration. i'm having a very difficult time with him lately. i've asked the pediatrician many times how much he should be eating each day because i'm so worried about him not getting enough. they said that i need to make sure that he gets a minimum pf 24 ounces of formula per 24 hours, and then whatever solids he eats on top of that are just a little bonus. they've really down-played solids. they said that during the first year formula is their main source of calories and nutrition and that solids are more just to teach them how to eat and see if they have reactions to any foods.
soooo.....the past few weeks just haven't been going well. there are days that i struggle just to get 24 ounces down him. then, since the pediatrician has said the formula is most important, there are some days that i only give him one solid meal, or sometimes none even at all because i'm trying to get him to eat the formula first. today he was just awful. he didn't want to have anything to do with the bottle until bedtime. and for several weeks now he fights me like crazy on the solids. he's in misery the entire meal. the other really bizarre thing is that when he wakes up in the morning he couldn't give a crap about eating. i mean, helloooo???? you haven't eaten for 12 hours, aren't you hungry? i'm starving when i wake up! i really think that i could not feed him at all until 9 or 10 and he wouldn't even notice. then, i have this book put out by the american academy of pediatrics (who by the way i think are a bit pompous, but...) and they have in there a "sample" daily menu for an 8-12 month-old. psh....yeah freaking right. there is NO WAY he would eat everything they have on that sample menu. they have on there 1/2 cup of yogurt. what the hell? aren't they not supposed to have dairy until 12 months? i mean seriously, they have listed there like twice the amount of food that LS has in one day (solids and formula combined).
so what do i do??? the hubs thinks that LS's appetite has dropped off because it's so hot. he says that everyone loses their appetite when it's hot. is that true? has anyone else found that? i'm at a total loss here. i wanted to reach out here before i call pediatrics again. i feel like i'm there every week...he's got a cough....he's got a rash...he's got a runny nose...he's cranky. they probably think i'm nuts.
of course, my main concern is LS's eating, but just to be george costanza for a second...."i'm paying for that meal!!!". remember that episode? it's where he thinks his girlfriend is barfing after her meals. of course, pig that george is he says, "of course i'm concerned...i'm paying for that meal!!!". but seriously, formula's damn expensive and i'm throwing a ton of it out! hmmmm....maybe i'll take that out of his allowance when he's older.....just like i fully intend to wake him up at 5:15 or 5:30 am when he's a teenager....payback's a bitch man.
soooo.....the past few weeks just haven't been going well. there are days that i struggle just to get 24 ounces down him. then, since the pediatrician has said the formula is most important, there are some days that i only give him one solid meal, or sometimes none even at all because i'm trying to get him to eat the formula first. today he was just awful. he didn't want to have anything to do with the bottle until bedtime. and for several weeks now he fights me like crazy on the solids. he's in misery the entire meal. the other really bizarre thing is that when he wakes up in the morning he couldn't give a crap about eating. i mean, helloooo???? you haven't eaten for 12 hours, aren't you hungry? i'm starving when i wake up! i really think that i could not feed him at all until 9 or 10 and he wouldn't even notice. then, i have this book put out by the american academy of pediatrics (who by the way i think are a bit pompous, but...) and they have in there a "sample" daily menu for an 8-12 month-old. psh....yeah freaking right. there is NO WAY he would eat everything they have on that sample menu. they have on there 1/2 cup of yogurt. what the hell? aren't they not supposed to have dairy until 12 months? i mean seriously, they have listed there like twice the amount of food that LS has in one day (solids and formula combined).
so what do i do??? the hubs thinks that LS's appetite has dropped off because it's so hot. he says that everyone loses their appetite when it's hot. is that true? has anyone else found that? i'm at a total loss here. i wanted to reach out here before i call pediatrics again. i feel like i'm there every week...he's got a cough....he's got a rash...he's got a runny nose...he's cranky. they probably think i'm nuts.
of course, my main concern is LS's eating, but just to be george costanza for a second...."i'm paying for that meal!!!". remember that episode? it's where he thinks his girlfriend is barfing after her meals. of course, pig that george is he says, "of course i'm concerned...i'm paying for that meal!!!". but seriously, formula's damn expensive and i'm throwing a ton of it out! hmmmm....maybe i'll take that out of his allowance when he's older.....just like i fully intend to wake him up at 5:15 or 5:30 am when he's a teenager....payback's a bitch man.
Saturday, June 4, 2011
January 2008: The Talk, Part II
every morning when i wake up at RMH the first thing i do is call over to the NICU to check on Charlie. i get a brief report, then i take my shower, then i eat a quick breakfast, then i go over to the NICU for the day. this morning when i called big C answered. she didn't tell me very much, but told me that i should get over there as soon as possible. i skipped the shower, skipped breakfast, didn't bother with the shuttle and ran over there. when i got there, it wasn't as horrible as she had made it seem on the phone, but it wasn't good either. apparently at some point in the night Charlie had another episode of de-sating, and they had to airbag him. i've gotten fairly used to these, but this one was much worse than normal. he wouldn't come out of it and his heart rate started to drop. it dropped so much that they were about to start doing chest compressions. then all of a sudden, big C asked the doctor if there was a DNR on Charlie. i was surprised and disappointed that she didn't know the answer to this. the doctor was pretty mad about it too. you can't be just about to start CPR on someone and then have someone else shout out something about a DNR. this in my opinion is really really bad. so they were about to start chest compressions and he suddenly snapped out of it and started breathing again and his heart rate came back up. but it was obviously enough to scare the shit out of all the doctors and nurses. i can't even imagine what the whole scene looked like. there have been a few times when there has been an emergency on a baby and it's terrifying. the nurse goes to the PA system and says "doctors to nursery 1", and about 20 white coats start swarming the nursery. the nurses get on edge. so far i haven't been present when a baby has died, and i've seen the look of relief on everyone's face when the crisis is over.
so after this incident, jay and i wanted to sit down with one of our favorite doctors (mr. long-winded) and see if he could give us any answers. we talked for a good two hours. we talked about everything. all of Charlie's problems...every single one of them. the whole thing seems like a blur now, but he told us that we needed to start coming to some decisions about the tough questions. do we want a DNR? do we at some point want to shut the machines off and let our son go? do we want to have him baptized? i will never forget the moment he told us that he thought Charlie had some kind of condition that they haven't figured out yet that will cause him to die. he told us he didn't think Charlie would be able to pull through whatever is wrong with him.
my son. my baby. he's only a baby. how can this life be so cruel? what am i doing? why am i keeping him alive and allowing him to continue to suffer? but how could i possibly tell them to turn the machines off and let him die? if i tell them to turn the machines off is that the same as killing him? i don't want my son to die. i don't want my first and only baby to die. my god, please don't take him from me. i can't lose my son.
so after this incident, jay and i wanted to sit down with one of our favorite doctors (mr. long-winded) and see if he could give us any answers. we talked for a good two hours. we talked about everything. all of Charlie's problems...every single one of them. the whole thing seems like a blur now, but he told us that we needed to start coming to some decisions about the tough questions. do we want a DNR? do we at some point want to shut the machines off and let our son go? do we want to have him baptized? i will never forget the moment he told us that he thought Charlie had some kind of condition that they haven't figured out yet that will cause him to die. he told us he didn't think Charlie would be able to pull through whatever is wrong with him.
my son. my baby. he's only a baby. how can this life be so cruel? what am i doing? why am i keeping him alive and allowing him to continue to suffer? but how could i possibly tell them to turn the machines off and let him die? if i tell them to turn the machines off is that the same as killing him? i don't want my son to die. i don't want my first and only baby to die. my god, please don't take him from me. i can't lose my son.
Tuesday, May 31, 2011
January 2008: Our Last Day Of Hope
today was a good day. every single doctor, nurse, and fellow NICU parent that we have talked to have all said the same thing: the NICU is a roller coaster. there are good days and there are bad days. one doctor said that even though there are bad days, you always want to keep seeing progress and slowly but steadily climb up and out of this pit.
so far, Charlie has only had a couple good days. every other day has either been bad or on the verge of bad. we are not progressing. for every step we take forward we take two steps back. we still have no answers. no prognosis. no reason.
today the sun was out. a rare thing these days. it was a beautiful day. cold, but not as cold as it has been. jay and i had a nice walk over to the NICU from RMH. we got there and started our routine. sit with Charlie. we listened to the morning rounds. we talked with the nurse. we went to lunch in the cafeteria. then we sat with him all afternoon. just watching him. jay has two tasks that he has taken on and loves every second of. his first is to brush Charlie's hair. i don't know why he likes this so much, but every time he comes in to see him, it's the first thing he does. he gets out Charlie's little brush and combs his hair. his second task is to read books to him. he doesn't read as much as he just shows Charlie the pictures. he loves to do this. i think it makes him feel like he is teaching him something.
then we stayed for the evening rounds. Charlie has done so well today. he has had a few "de-sats", but nothing too major. i don't think they even had to air-bag him at all today. he was taking more breaths on his own. we didn't leave the hospital until about 9:00 at night. as we were standing outside waiting for the shuttle to take us back to RMH, jay was looking at me. i said "what?". and he said, "nothing. i think Charlie is going to be okay". i smiled and said, "so do i".
so far, Charlie has only had a couple good days. every other day has either been bad or on the verge of bad. we are not progressing. for every step we take forward we take two steps back. we still have no answers. no prognosis. no reason.
today the sun was out. a rare thing these days. it was a beautiful day. cold, but not as cold as it has been. jay and i had a nice walk over to the NICU from RMH. we got there and started our routine. sit with Charlie. we listened to the morning rounds. we talked with the nurse. we went to lunch in the cafeteria. then we sat with him all afternoon. just watching him. jay has two tasks that he has taken on and loves every second of. his first is to brush Charlie's hair. i don't know why he likes this so much, but every time he comes in to see him, it's the first thing he does. he gets out Charlie's little brush and combs his hair. his second task is to read books to him. he doesn't read as much as he just shows Charlie the pictures. he loves to do this. i think it makes him feel like he is teaching him something.
then we stayed for the evening rounds. Charlie has done so well today. he has had a few "de-sats", but nothing too major. i don't think they even had to air-bag him at all today. he was taking more breaths on his own. we didn't leave the hospital until about 9:00 at night. as we were standing outside waiting for the shuttle to take us back to RMH, jay was looking at me. i said "what?". and he said, "nothing. i think Charlie is going to be okay". i smiled and said, "so do i".
Tuesday, May 24, 2011
Present Day: Love Me Some Lilacs
so aside from the sneezing, runny nose, watery eyes and itchy throat, lilacs are by far one of my favorite flowers. i think they're absolutely gorgeous...they have that whimsical feel that i absolutely love. again, i'm so inspired by that new blog i'm following, and i want SO badly to have a gorgeous, simple, well-decorated house. and as much as i want that, i want awesome curb appeal too. i think landscaping can really make or break a house. right now, we seem to be in the "break" phase, but we're working on it.
so, maybe if i have the patience to wait for the photos to upload i'll share more "pretty pictures" with you.
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