Customer Reviews

Sunday, June 19, 2011

January 2008: The Day After

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. 

Tuesday, June 14, 2011

January 2008: Gone

Charlie died early this morning.  he is gone.  our son has died, and so have i. 

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. 

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. 

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. 

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". 

Tuesday, May 24, 2011

Present Day: Love Me Some Lilacs

look at me!!! i learned how to post photos on my blog!!!  unfortunately, i take my pictures so that they're big files, so it takes forever to load them up here.  i also don't know yet how to position them well within the post, so for now, here they are.  what do you think of my professional terminology?  big files....pretty pictures....that's the extent of my photography knowledge. 

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. 

Monday, May 23, 2011

January 2008: A Prayer

dear god,

i know i don't go to church much, and i know i don't pray very often.  to be honest, i really don't know how to pray.  i've heard that if you want to pray to just pretend that you're having a conversation with someone. that's really hard for me, and i end up feeling stupid, so i never say my prayers outloud.  the term "pray" is so overused, i don't even know what it means anymore.  i don't know what i believe anymore, but i want to believe that you know what is my heart.  but just in case, here is my prayer....outloud.

please god. please make my son healthy.  please make him okay.  i can't watch him suffer any longer.  i hate every second that he struggles to breathe.  he can't move.  he can't roll over, he can't be held, he can't feel my love because all he can do is lay there with a breathing tube, IVs, monitors, and every day i feel more and more tortured as i watch him suffer.  i love my son more than life itself.  i would do anything for him.  please, please just tell me what to do.  please let me somehow take his pain and bear it so that he will be okay.  please give me his pain and his sickness.  i don't care how much it hurts, i just want him to be okay.  please put me in that room, laying there alone.  please.  i will die for him if you will just let me.  i will die any way you want me to just to have him live a healthy, normal life.  i want so much for him.  i want him to know all the joy that can be in this world.  i want him to love another person the way i love him.  i want him to run, and to play, and to have friends, and go to school, and get married, and have children.  i want him to live a happy life.  i want him to dream, and to make those dreams come true.  please.  i am begging you from the depths of my soul.  just make my son okay.  i will do anything.  i can't lose him.  i can't live without my child.  if you take him you better take me too because i will have no life if i don't have him.  i love him so much it hurts.  i love him like i never thought possible.  please god.  please.  i am here on my knees, pleading with you.  i am crying like never before.  my very existence is so wrapped up in my son that i can think of nothing else.  please god.  please just make my son healthy.  please just make my son okay.  please give him the miracle that only you can give, and the miracle that he needs and i need more than anything.  make my son okay. 

Saturday, May 21, 2011

Present Day: Need some ideas

okay, i know i only have a few followers, but please, can anyone give me some ideas.  i'm what i like to call...."creatively challenged".  i love projects and whatnot, but i'm one of the least creative people out there.  i just started following a new blog, and i'm TOTALLY inspired to get my house looking a little more like a home....little less like a dorm room.  sooooo....i have a whole bunch of rocks that are extremely special to me and i've been wanting to do something with them for 3 years now.  these aren't cool rocks or anything, they're just your standard, grey rocks, all different shapes and sizes.  but i need to showcase them somehow.  HELP!  any ideas?  my blog isn't cool enough to be able to offer an incentive reward for ideas, but i'd be extremely appreciative of your help.

here's the new blog i'm following....haven't read too much yet, but i like what i see so far.  she's a little more popular than me...over 11,000 followers.  can you tell i have blog-esteem issues?

Sunday, May 8, 2011

Present Day: Mother's Day, The Good, The Bad and The Ugly

strong warning about this post:  you're either going to love it or hate it.  if you have lost a baby and are anything like me when it comes to anger, this post might be for you.  if not, you may not want to read any further...

well, today was mother's day.  mother's day...over the past four years those words, and this day has come to mean so many different things to me.  i think that you could use nearly every human emotion to describe how i have felt about this day.

the ugly:
let's call a spade a spade here...grief is a fucking bitch.  it is ugly, it is nasty, it fills you with emotions you had no idea you could feel.  i never knew how desperately i could want to just die until my first mother's day as a mother.  it was horrible.  it was unbearable.  Charlie had died, and nobody on this earth could possibly understand the depths of my pain.  everyone i talked to tried to make me feel better about it, and all i wanted was to feel worse.  i thought that if i just felt bad enough i would actually die, and then it would be over.  i saw commercial after commercial advertising heartfelt messages about mother's day.  how could they do that to me?  how could they bring me so low?  how could they stand there and advertise cards and flowers for mothers, showing pictures of mothers holding babies and chasing around kids.  nobody even knew i was a mother.  and those who did know that i had given birth to a son and watched him slowly die didn't think of me as a mother.  it seemed that everyone around me thought that in order to qualify as a mother you had to have a living baby.  and i couldn't do this.  i  had nothing.  i was empty and lifeless.

the bad:
i watched ellen's mother's day special on saturday (  the main reason i watched it was because i wanted to see if that by some one in a million chance she might read the letter i had sent her asking her to wish loss moms a happy mothers day.  as soon as it started, i saw the audience full of pregnant women and i thought to myself "well, you did it to me again you stupid bitch".   i could barely watch. i had to fast forward through just about everything.  did you see all the baby stuff she gave all of them?  it was insane.  it made me want to blow up my tv.  these were all first time moms.  let me give you a little reality come home after your baby has died and see the bassinet waiting, and the car seat locked in place, and know that they will never be used by your baby is a trauma that will haunt you until the day you die.  when you have to pick out an outfit for your baby to be buried in, you will never wish for death to take you more than at that moment.  you fools.  you god damn fools.  you have no idea.  you are living in lala land while some of us will be walking through hell on earth for the rest of our life.  my message to every pregnant woman out there...don't buy a thing.  you don't need it.  if your baby comes out healthy and ready to go home in two days, all you really need are diapers, wipes, food, and a few clothes, all of which your partner can get while you're in the hospital, and some of which some hospitals will even give you when you leave.  savor your baby...not the merchandise.

i know every person that reads this is thinking that i'm nothing but a jealous bitch.  and you're right. i am.  i'm angry, i'm jealous, i'm mad.  it is not fair.  the first time moms on ellen's show were bouncing around and dancing.  my first pregnancy, i was in so much pain i cried at night and thought i wouldn't make it one more day.  my second pregnancy, i could have easily died.  my third pregnancy, i was on bedrest for three months.  pregnancy has never been a happy thing for me.  it has been nothing but a nightmare filled with fear, and hopes that 3 out of 4 times were crushed. 

and you know what i hate most of all?  i just can't get over it.  everyone probably thinks i need to shut up and quit whining and complaining.  but i can't. get. over. it.  i have LS now.  and he is the reason i get up in the morning.  he's the reason that for the first time since january 2008 i have wanted to die.  he's everything to me.  but i still want my other three babies.  i want his siblings.  i want the chaos in my house of having four boys.  i want to be a happy pregnant person because that's all i see around me.  i want something that i will never have.  and some days i still just can't accept that i can't have it.

so for now, i'm breaking up with ellen again.  i thought i was in a better place and would be able to handle the insensitivity, but obviously i'm not.  obviously i can't cope with someone rubbing it in my face that there are hundreds of happy pregnant women out there.

the good.
i have a healthy baby.  i have a living son.  i tell him every day that i couldn't love him any more even if i tried. today i could go out in public on mother's day and people knew that i was a mom.  and there is no better feeling in the world than seeing his face light up and his arms flail when i walk up to his crib every morning.  i love you LS.  i owe my life to you.

Saturday, April 30, 2011

Present Day: Blogging Dummy, Part II

okay seriously...can anyone tell me how i reply to a comment someone has left?  on other blogs i've seen there's a reply button, but i can't find this on my own blog!

anyway, i wanted to respond to jessica for the nice comment she left on my ellen post.  thank you for letting me know that i'm not the only one out there that thinks that infant loss gets ignored.  i appreciate your kind words, and not feeling like i'm nuts!

Friday, April 29, 2011

Present Day: The History of Ellen and Me...Ellen and I...Me and Ellen.....Ellen and Me, Right?

so after reading heather spohr's post today and feeling insanely jealous that she got to go see ellen degeneres, i want to share with you why ellen and i are best friends (a fact she still isn't aware of).

it all started three years ago, a couple of months after Charlie died.  i know i haven't gotten to that point in my story yet, but if you've been following me (let's hear is for the sexy 7!), you probably figured that that's where we were headed with Charlie.  there's a reason i capitalize his name and no one else's...actually, i don't even know why i do that.  i always capitalize the names of anyone who has died. don't ask me why, i just do.

but i a few months after Charlie died, i happened to tune into the ellen degeneres show.  i was hooked.  it was love at first sight.  i found myself smiling for the first time in months.  i of course felt guilty smiling and enjoying something.  but, for that time, it was an hour out of my day where i could get halfway into another world.  it kept my attention long enough to prevent a breakdown.  however, i did have a problem with her show.  it was the way that she treated anything dealing with babies.  i mean, she really does talk about babies a lot.  she always asks her guests about their kids, she kisses the bellies of her pregnant audience members, she shows funny videos of babies...but, i tried to just tune that part out and continued watching.  it was my escape...or at least as much of an escape as my mind would allow.

then, in may of 2009 i was having yet another sleepless night and i decided to write to ellen.  mother's day was coming up, and i was feeling really horrible.  i was pregnant with the Twins, and even though i was filled with hope, i felt like shit.  just plain shit.  Charlie was gone.  i didn't know what i was. nobody would have any clue that i was a mother if they saw me walking down the street.  i felt alone, ignored, betrayed, left you want me to keep going with the description?  i started to i really even a mom?  i know i was pregnant, i know i delivered a baby, but what am i? i was desperate for someone to make mother's day really special for me.  i was dying inside.  so, i wrote  ellen the letter that i'm putting below.  i didn't send it right away though.  i couldn't decide whether or not i actually wanted to take the plunge and hit the send button.  a few days later, ellen announced that for mother's day her entire audience was going to be pregnant people.  i thought someone had just driven an knife through me.  i don't know why it hurt so badly, but hearing that just made my heart sink, and i stopped watching her show right then and there.  i couldn't take it anymore. 

a couple months ago, i decided to give ellen another shot.  i started recording it again (yeah right, like i'm going to sit through commercials).  i've been watching her faithfully for a few months now, and i have to say that i'm happy to be back.  i still get upset with the way she talks about babies and whatnot, but having LS makes it easier to cope with that anger and frustration.  so, i wrote ellen again.  this time, i actually sent the message.  the first message i sent basically told the story i just told you (in a lot fewer words).  i didn't have room to include my original letter, so i wrote her again a week or so later and put in my original letter.  NO RESPONSE!!!!! man!!!!!  not that i was really expecting one, but i was hoping.  in my first letter, i asked her if she would fill her audience this mother's day with moms who have lost.  yeah i know...totally unrealistic and depressing, but it would sure make one hell of a point.  i gaurentee she wouldn't have to look very hard to fill up her seats with loss moms.  think how amazing that would be.  think how many stories would be in the room.

which brings me to my rant of the day...WHY THE F*** DO PEOPLE IGNORE INFANT LOSS?  i swear, sometimes i get so mad about it that i feel like my head is going to explode.  am i totally nuts? does anyone else feel like infant loss is a completely taboo topic that no one talks about?  all these damn commercials, movies, tv stars, movie stars, magazines....EVERYWHERE you look, it's one happy baby story after another.  i've watched the show NICU only a couple times, then i had to stop watching.  all the babies i saw went home.  am i living in a completely warped world or something? i swear, i really didn't know about infant loss until it slammed me in the face.  i didn't even know it was a possibility anymore.  i thought that with today's modern medicine, babies always lived.  i'll ask the question again, and hopefully now that i have the sexy 7 followers, i hope someone will i the only idiot out there?  i feel like i was SO stupid, SO ignorant.  am i justified in my opinion that nobody talks about loss?  what is going on here?  sometimes i feel like i'm living in a completely different world than what i see in the media. 

so that's why i have my pie-in-the-sky dream of ellen filling her audience with loss moms. i don't know about others, but it would mean the absolute world to me to be recognized as a mom on mother's day...not because i have one living son, but because i have four children altogether. 

here's the original letter i wrote to ellen...

“Mother’s Day is quickly approaching and I wanted to ask you to recognize a very special group of mothers.  We are mothers that are often overlooked or avoided.  Overlooked because many do not consider us to be mothers, and avoided because it is too awkward and painful to confront us.  We are the mothers whose babies have passed away.  We find ourselves asking “What am I?”.  What are the criteria for being a mother? We carried a life, many of us gave birth, and many of us were even able to hold our babies.   Yet we are not changing diapers and pushing around strollers.  We are not kept awake by 3 AM feedings, but we have our own struggles that we must face.  What do we say when someone asks us if we have children?  What do we do with the car seat and the crib that we purchased in anticipation of our baby’s arrival?  How do we hope for another baby without feeling that we are betraying the memory of the one we lost?  Every mother has a story, and we all deserve to be remembered – whether our child is with us or not. 
     I’m hoping you’ll pass along two messages for me.  First, to the family and friends of a grieving mother – acknowledge us!  We are longing to have our child’s existence and our motherhood validated.  And to all of the grieving mothers out there –you are still a mom!  Your arms are empty, but your heart is not.  Your love does not die when your baby dies.  Your love for your child grows every day, and this is what makes you a mom.  So to all moms out there, and especially to grieving moms, I hope you have a very special Mother’s Day.”

Thursday, April 28, 2011

December 2007: The Talk

it's been a few weeks now, and Charlie just isn't getting better.  jay and i are so frustrated by the lack of information that we've been getting.  none of the doctors know what is going on.  nobody can tell us if he is going to live, die, be severely disabled, be healthy...nothing.  the only thing they can tell us is what his last blood gas was...or what his sodium level was.

we've seen so many different doctors now.  the cardiologist has been in several times.  Charlie still has the small hole in his heart (the PDA has not closed), and he also has pulmonary hypertension.  a kidney specialist has been in...Charlie has a horseshoe shaped kidney, and we have no idea what this means for the future.  a neurologist has been in...Charlie's brain doesn't have the level of activity that one would expect for a baby his age.  a GI specialist has been in...Charlie's liver is starting to malfunction.  on one of his blood gases, the prick to the heel wouldn't stop bleeding, so they checked his clotting factors and they were not normal.  he is also starting to accumulate fluid in his abdomen and he is starting to become jaundiced again.  pulmonology has been in...they don't know why Charlie can't breathe.  his lung x-rays still look cloudy, and they should have cleared up by now.  every single major organ and system seems to be slowly deteriorating.  and no one can tell us why, or what will happen.  no one has been able to say, "oh, he has xyz syndrome.  here's what we do about it". 

so after expressing our frustrations to the doctors we had a big meeting with i don't even know how many doctors, big C and the geneticist.  we went over everything.  all of Charlie's problems, what they can do something about, and what they are still walking in the dark on.  by the end of the meeting, it was decided that we would go ahead and get the hole in his heart closed.  the way they described it was "routine major open heart surgery".  great, well that gives me a lot of comfort and faith.  i guess it isn't abnormal at all to have the PDA still open, especially in premies, but then again, none of the doctors have seen a case like Charlie before.  still though, Charlie's surgery is scheduled for friday.

friday surgery.  that morning, the cardiac surgeon did a full evaluation of Charlie.  i guess that they have to do this before every surgery, which i think is crucial.  he said that the surgery would just be too risky for Charlie, and that he probably wouldn't survive the surgery.  when they do the surgery they have to do something with the lungs so that the patient can only breathe with one lung, and since Charlie's lungs are so weak as it is, to try to ask him to make it only with one functional lung is just too risky.  plus, he didn't think that closing the PDA would even help much, and given the fact that he has such pulmonary hypertension, it could even hurt. is off.  i was relieved, but also upset.  relieved because i was terrified of him having open heart surgery, but upset because i felt like finally some action was being taken to get him better, and then the plans just fly out the window. 

after all that, i went back to RMH and stayed up until all hours of the night/morning and researched everything i could.  i looked up every symptom Charlie had.  i researched every doctor at boston children's hospital and emailed probably 25 different specialists begging them for help.  i emailed liver specialists, neurologists, pulmonary doctors, kidney doctors, everyone i could think of and i told them Charlie's whole story, all his problems and i told them i was desperate for help.  i heard back from several of them, but nothing really all that useful that i could sink my teeth into.  all said that they'd be willing to consult with Charlie's doctors, but it seems like they want to hear from an actual doctor, not a lunatic mother.  i've never felt so helpless and worthless in my life. 

Thursday, April 21, 2011

December 2007: Human Being vs. Science Experiement

Side Note:  i know i haven't posted in a while.  all my reasons are pretty lame...tired, busy, can't stop my neurotic self from cleaning...yet my house still looks like a pig sty.  and then the other reason was that a few weeks ago i was getting really upset, and i was trying to decide if blogging was helping or hurting my emotional state.  still haven't figured it out.  i thought i wanted to get my story off my chest and say all the things i've been feeling for four years but have never said aloud, but i just don't know....sometimes it seems like it just makes me feel worse.  so, i'm still working on figuring out if blogging is good for me or not.  i'll keep you....POSTED.....hahahaha....i am so freaking funny.

i had a little run-in today with Charlie's nurse.  backing up...a couple weeks after Charlie was born, they just couldn't figure out what was going on so they brought in a genetics doctor and had him do an assessment.  he made a report and threw out the names of a few different genetic disorders that Charlie might possibly have, all of which he has been tested for and the results are pending.  as soon as they told me what he had said, i wrote down then name of each disorder and then i sprinted back to RMH and started looking stuff up on the internet.  that was one of the biggest mistakes i could have made.  i spent all night on the internet looking up these disorders.  nearly all of them ended in death.  if they didn't end in death, the outcomes were severe mental and physical disabilities.  i cried.  and then i cried some more, and then some more.  i refused to believe that Charlie had any of these disorders.  it was horrible.  i scared myself nearly to death with out-of-control thoughts of how Charlie's life might be.  i vowed after having yet another breakdown that i would never do that again.  i will never get on the internet and read all sorts of horrible things unless i know for sure that that is what we are dealing with.

so, today there was a new nurse on Charlie when i walked into the NICU.  she seemed okay at first, but then she started talking.  here's what she said to me...."i read dr. ___'s report, and saw that your son might have a genetic disorder.  i'm thinking of signing up to be one of his primary nurses.  i'm really interested in this kind of stuff, so whenever there is a case like this i try to jump right on it."  I. WAS. PISSED.  this is my son you're talking about.  he is not "an interesting case".   he's not a learning tool.  he's not a science experiment.  that's why you want to be his primary?  because he might have a genetic disorder?  maybe you should re-evaluate your motives.  maybe you should pick your primary babies based on compassion and love for the baby and/or parents...not just who is most interesting. 

of course, as we all know, i'm a wuss, and i never actually say how i feel or what i'm thinking (unless it is through the anonymity of a blog), so i didn't say anything to her about how offended i was by her insensitivity.  so then at the end of her shift she said "well, i printed out some information about each disorder that dr. ___ mentioned, do you want it?".  and i said "do we know for sure that that is what is wrong with him?".  her:  "well, no".  me:  "then no, i don't want it".  she seemed to be offended by this and left pretty quickly.  she has no idea the torture i put myself through last night doing exactly what she was trying to get me to do.  been there.  done that.  never doing it again. 

that was the last time she was on Charlie.  being a bitch may have some advantages yet...nobody wants to deal with me. 

on a happier note, big C signed up to be one of Charlie's primary nurses!!!  i didn't hold back at all when it came to making my desires to have her as a primary known.  i told everyone.  i even asked her to sign up for him.  i like big C.  she is good to me, and more importantly she is good to Charlie.  i think she loves him.  i think she wants to be his primary because he is an amazing baby and she loves him and wants to take care of him.  and that is the kind of person i want to watch my son when i can't.

Thursday, April 7, 2011

Present Day: Maddie S.

i think most of my now 6 followers have come to my blog from Maddie's site.  so, assuming that that's true, we all know what today is.  it's the anniversary of Maddie's death.  i've been posting some comments on her site, but today i just didn't feel right about commenting.  there is so much i want to say, but at the same time i have absolutely nothing to say.  usually when i comment i use my own experience and say the things that i feel and/or wish people had said to me.  i do this because i'm very adamant about the fact that NOBODY knows a person's situation except for the individual themselves.  i think that i can relate to a lot of the things they feel, but i feel very arrogant giving advice.  so, that's why i just try to tell my own experience.  but i just felt so selfish talking about myself today on their site, so i'm using my own site to say how i feel. 

i'm absolutely heart broken for them.  i don't know them at all, never talked to them, never emailed them, nothing.  but, i feel like i'm somehow on this journey with them and reading their words today makes me absolutely cringe.  i understand....and i don't understand.  mike talked about being haunted by the memories of their last seconds together.  everyday, i relive Charlie and the Twins dying.  i remember every second of it.  i remember it so well that i have to ignore it because if i actually allowed myself to feel it i would never get out of bed again.  heather talked about the fact that she is just not okay.  neither am i.  i pride myself in the fact that i put on a good show, but deep down, i'm never going to be okay again.  my son is dead.  my twins are dead.  they're fucking dead and there's not a god damn thing i can do about it.  and having to live with that the rest of my life is sometimes more than i can bear.  i understand that part of their grief.  but i don't understand what it would be like to lose a child that is a year and a half old.  this whole time i've been very adamant about the fact that a loss at birth is just as painful as a loss at 6 weeks, which is just as painful as a loss at 2 year, or 20 years.  but is it?  realistically, is it?  i want to believe that yes, it is.  i want to believe this because to not believe it would somehow downplay or dismiss the pain and the significance of the loss.  i have heard many times, "oh, it was just a miscarriage".  just a miscarriage?  fuck you.  you know nothing.  but as LS gets older, i can see where the thought of losing him gets scarier and scarier.  when we leave the house i look at his toys laying all over the floor, and i think about heather and mike going home to toys laying on the floor that will never be used again by Maddie.  i always think about this.  i see the way i leave my house, assuming that i will come home, put LS down on the floor and he'll start eating his wiggle worm.  i look at the clothes hanging in his closet, i look at his laundry hamper full to the brim and think that i really need to do a wash.  i can't even begin to imagine coming home without him.  it's a thought that terrifies me so much that sometimes i can't breathe.  so maybe the older the child is when they pass, the more painful it really is.  i don't know....i just don't know.  i think that it's very different.  i lost Charlie after 8 weeks in the NICU.  i lost my Twins at 16 and 18 weeks gestation.  the pain of Charlie dying is very different from the pain of the Twins dying.  i have MEMORIES of Charlie.  i got to know him for 8 weeks.  8 weeks that i wish everyday that i could go back to.  i have nothing from the Twins.  absolutely nothing.  i didn't know their personalities, i didn't know what they looked like, i have no memories that i can access to help dull the pain a little.  our time with Charlie in the NICU was hell on earth.  but i can still remember him, and how he made me laugh sometimes.  he made me cry everyday, but he also made me smile everyday.  i don't have that with the Twins.

so is it more painful to lose an older child than one that hasn't even be able to start life yet?  i don't know.  i don't think anyone knows.  i think it's different.  for better or for worse, it's just different.

my heart goes out to you heather and mike.  i know you probably don't read this, but if you do, i'm just so sorry.  i'll wear purple today. 

Tuesday, April 5, 2011

Present Day: When I Win The Lottery....

this is a game that jay and i play all the time....we always dream of winning the lottery and then ask each other what we would do with our winnings.  of course, we don't buy lottery tickets, so the chances of this happening aren't as good as they could be, but's a fun game to play.  yeah yeah yeah, i won't buy you happiness.  believe me, i know this.  we just had the conversation about it tonight.  even if we won $20 million, it would be like...oh, that's good.  we will never say, "that's awesome, my dreams have come true, blah blah blah".  we know all too well that no amount of money in this world is going to bring back our three babies that have died. 

sorry, had to add in something depressing, lest you think you were reading the wrong blog!  but anyway, in honor of one of my favorite games, here's what i would do when i win the lottery, not really in any particular order, except #1. 

1.  pay off ALLLLLL my debt.  man, that would be nice. 

2.  build a house.  the older i get (the whopping 28 years old that i am), the less i want in a house.  when i was younger and started dreaming of playing house, i had big fancy ideas of what i wanted my dream house to be like.  no more...i want something pretty simple, but nice.  my requirements (since money will be no object once i have millions) are: 
             a really big kitchen with tons of counter and storage space. 
             a BIG ASS pantry.  i mean just freaking huge.  i HAAAAAAAAATE having to store food on the counters because it won't fit in our cupboards.  it drives me up the wall. 
             a pool.  i love swimming, and when i was growing up we had a pond near by, and we spent the whole summers swimming.  i loved it.  i want the same for LS (by the way, that's what i'm calling my living son...LS).
             an awesome deck.  again, i love being outside in the summer, so this is a must. 
             other than those 4 requirements, i think it would just be kind of a standard house.

3.  start a nonprofit.  this is TOTALLY my dream.  i had this epiphany about a year after Charlie died.  it was such a DUH moment.  i don't even know what brought it on, but i remember standing in the kitchen and thinking, "ah haaaaa!!! THAT'S what i want to do with my life".  so i went out and bought a book on how to start up a nonprofit, i talked to an accountant, a lawyer, a few other people that have started them, and you know what?  starting a nonprofit is really damn intimidating!  i got so overwhelmed with how much was involved that i didn't even know where to start.  then that whole stupid money thing came in.  of course, you need money  to start a nonprofit, of which, i have none. so, i haven't given up on my dream, but it's on hold for now until i'm at a point in my life where i'm working and can actually save something for this.  so once i do start a nonprofit, i want to do all sorts of shit.  here are some of my plans...
            make bereavement boxes for NICUs and maternity wards to give when parents lose a baby.  it is devastating to me that some parents don't get anything when they have a baby that dies.  it downright pisses me off that a lot of hospitals don't have any kind of a bereavement program in place. you dipshits, not every baby pops out healthy and happy, and it is your responsibility as a care provider to help a family through this. 
            make care bags for NICU families.  i want to put things in there that i found myself needing when we were in the NICU. 
            EDUCATION and AWARENESS!!!!!  i also have this dream of traveling the country and speaking to groups about loss and raising awareness about it.
            i have lots of other things that i want to do, but it's getting really damn late and i'm really damn tired.  but, basically the mission of my nonprofit would be to help families that lose a baby, and to raise awareness about infant loss. 

4.  establish an awesome college fund for LS.  i would want to give LS all sorts of stuff, but i think it's really important that he learn the value of hard work and that chances are you're not going to fall ass-backwards into money, so you better be ready to make it using your own skills and determination. oh shit, i hope he doesn't look to me as a role model for that one!  i know the value part of that sentence, but just haven't quite gotten around to the earning concept of it. 

5.  get the biggest, baddest digital SLR camera out there.  i mean just a frigging awesome one, with different lenses and everything.  i actually don't know anything technical about photography at all. all i know is that i absolutely love to take pictures, and i really want something better than my little point and shoot. 

6.  do something totally awesome for the ronald mcdonald house that we stayed at.  i don't know what this totally awesome thing would be, but it would be awesome. 

7.  some other things i would buy for myself......covered ice cube trays for the purees that i've been making for LS.  jay isn't really a fan of me using our regular trays because then we run out of ice.  these cool fish stickers i found to decorate LS's room.  a massage a month (or maybe one a week...i mean, i am a millionaire right?).  picture frames for these awesome black and whites i've been printing out.  TONS of stuff from shutterfly.  another car seat to put into jay's car.  oh, and for about 6 years now i've REALLY been wanting that matching necklace and bracelet set from tiffany's.  you know the one that like EVERYONE had 10 years ago, with the heart thingy?  so i might be a little behind the times when i get it, but i've wanted one for so long. 

8.  travel.  some of the places i want to go are......the grand canyon, las vegas (because i think i just kind of have to as an american),  amsterdam (to see the tulips...not the red light district), anywhere in europe, quebec city, british columbia, tahiti, the british virgin islands, london....hmmmm....there's more, i know there are. 

that's about all i can think of for now.  will someone please respond and tell me what you'd do if you won the lottery???  i'm totally counting on you my core group of 5 followers!  that's right, 5.  pretty soon i'm going to have to take off my shoes and socks to be able to count all my followers! 

Sunday, April 3, 2011

December 2007: Charlie Almost Died Tonight

Charlie is getting worse.  everything is getting worse.  i don't understand what is wrong with my son.  i just want to know what is wrong and what that means.  one nurse told me that he may have to be sent home on monitors or oxygen.  another even whispered the T-word...tracheostomy. 

ever since the baby at the front of the nursery died i have been starting to go a little out of my mind.  Charlie de-sats all the time.  his monitors are constantly going off, and they have had to airbag him more and more.  i used to be so strong.  i would stand there with him and try to calm him down.  i would try to talk to him calmly or i would say shhhhhhh over and over for 10 minutes.  i would be right there with him until his O2 came back up and he calmed back down.  that was then.  in the past couple days i have been freaking out and breaking down the second he starts to de-sat.  i've been leaving the room every time.  i just can't handle it.  i can't handle watching them airbag my son, staring at the monitors, wondering if this is it...if this is the end.  big C has seen this change in me and even said to me "what's going on with you?  you used to just stand here and take it?".  leave it to big C to put me in my place when i need it. 

tonight i thought it was the end.  all day Charlie's abdomen was getting more and more distended.  The nurse kept measuring it, and it kept growing.  I was panicking because that was one of the things i noticed right away about the baby that died....its abdomen was huge.  of course, now we're into a god damn weekend.  you better be ready to suffer in a hospital if it's a weekend or after 5:00.  here in this NICU, the attending physician doesn't work on the weekends, so unless you spontaneously combust, they aren't going to do a fucking thing for you....."oh, we don't really make care decisions when the attending isn't here".  well what about when someone is going to die?  do you act then you cowards?  so ever since this afternoon i have been begging them to do an xray of Charlie's belly to see why it keeps getting bigger.   they told me that it is probably just gas, but i still want confirmation on this.  the good thing is that i have the nurse on my side and she doesn't mind harassing the damn doctors.  they keep saying, okay, we'll come do an xray, but we just keep waiting and waiting.  and then Charlie throws another fit and starts to de-sat again.  at first i thought this was just the usual, but he just kept getting worse and worse.  his O2 kept falling.  his heart rate was dropping.  the nurse kicked it into high gear, whipped out his vent tube and started bagging him.  still dropping.  and then, his O2 went to 0.  the heart rate monitor cut out.  i thought Charlie died.  but then, just as fast as he had gone into the episode, he came out of it.  his O2 started coming back up...60...64...72...81...his heart rate returned to normal, and we all started to breathe again.  they did the xray pretty quickly after that.  after a while the doctor came back in and said, "yes, it is just gas".  thank god.  thank you. 

jay and i went to bed that night, and i don't know what he was thinking, but all i could think was that our son was still alive.  he was over in the NICU being taken care of, and we would get up tomorrow morning and start the routine all over again.  Charlie was still alive. 

Thursday, March 31, 2011

Present Day: Dear Hughes Net

you dirty bastards.  thank you so much for your "fair access policy" which CUT ME OFF on tuesday night for 24 hours.  if your going to do that, the least you could do is have the balls to call a spade a spade.  lets face it, your "fair access" policy is nothing but a way to get more money out of me.  if i give you more money each month, i can download more.  if i buy a "redemption token" after i go over my limit, i can restore my connection.  i'd much rather you just say, "i want more money from you", than try to pass this shit off as "fair access".

for those of you who are lucky enough to be able to get dsl or cable internet in your area, let me tell you a little about hughes net satellite internet.  first of all, they charge an exorbatant amount of money each month to get "high speed".  high speed my ass.  it's certainly faster than dial up, but it's really not "fast" by any means.  this is why i can't even watch videos on the internet.  say the videos DO actually load (which a lot of times they don't), all they do is skip and skip, making the video frustratingly impossible to watch. oh, and if i do get to watch a skipping video, that uses up my daily allowance pretty quickly, and then i get cut the eff off.  oh, my favorite part of their commercials is when the woman on there says "just think, in the time that you can download just one song on dial up, you can download an entire album on hughes net".  NO YOU CAN'T BECAUSE YOU PIECES OF SHIT CUT ME OFF AFTER ABOUT 6 SONGS -- FAIR ACCESS!!!

so, to all you lovely policy makers at hughes net, please rest assured that i will be telling everyone i know how much you suck and will be looking for every possible alternative to your service that there is out there.  and by the way, i'd bet my whopping savings account ('s actually really tiny) that whoever decided to make that damn fair access policy was NEVER a stay-at-home-mom WITHOUT internet. 

a pretty unsatisfied customer that has absolutely no loyalty to you and will be switching as soon as possible.  

Present Day: Open the Flood Gates!!!

the followers are pouring in now -- i'm up to 4!!!!!  i'm such a dork, i just get embarrassingly excited when i get a new follower.  does anyone know why this is?  why do i feel the need to be followed / read?

so, note to all readers, i'd recommend signing up to follow me now before the internet just shuts down because of overcrowding on my blog!

but seriously, thank you to my little core group of followers :)

Wednesday, March 23, 2011

December 2007: A Harsh Reality

i have seen more in the past few weeks here in the NICU than i have in my short 25 years on earth...more than i ever wanted to know.  so many babies are sick.  this isn't what i signed up for.  this isn't what i saw on tv and in the movies.  there, everyone has healthy babies.  they make jokes out of getting pregnant.  they make comedy movies about pregnancy and delivery.  comedy!  there was nothing funny about Charlie's delivery.  there's nothing funny about what is going on now.  america's funniest home videos has funny stuff about babies all the time.  the thought of laughing at anything baby-related right now makes me want to vomit.  i feel physically sick everyday.  Charlie is getting sicker and sicker, and nobody can tell me what is going on, and whether or not he is going to live.  today i finally asked one of the doctors point blank, "is he going to die"?  she said "i don't know.  it is a possibility". 

a lot of the babies in this nursery have come and gone.  they come in because of a relatively minor issue...stay as little as one day, or a few days, then they move on to the next nursery, and the next thing i know i don't see their name on the NICU boards anymore...they have now moved into the "NICU graduate" category.  they've gone home....gone home to be with their families and be held and rocked and loved. 

there are only a couple of us left here that were here when we first started out.  david is one of them.  i feel like such a bitch looking back on my the time, i didn't think about him very much. i always saw him because he was right next to us, but i was so focused on Charlie that to be perfectly honest, i didn't care much about what was going on with david.  now i realize just how sad his situation was.  no one ever came to see him.  he had absolutely no one in this world.  here is this tiny baby who has no one there to love him and look out for him.  big C has been amazing to him...she seems to have tried so hard to give him all the love she possibly can, while still being a professional and also taking care of Charlie at the same time (since they share a pod).  david had an MRI the other day and big C was visibly upset that day.  i don't know too much...only what i can pick up from the hushed conversations.  but from what i gather, the MRI showed that he has significant brain damage from the stroke that he suffered just before birth.  a very nice lady came in a couple days ago and spent some time with david because she was thinking of adopting him.  i heard the doctor talking to her, and david will never live a normal life.  they said that she may be able to take him out in public when he's older, but they just don't know.  it sounds like his brain will slowly just deteriorate and shut down piece by piece, and eventually the areas that control his vital functions like breathing and heartbeat will also shut down.  i never saw the woman again.  i know big C was very disappointed that the woman didn't adopt him, but she was an older woman and i think that she probably felt that it was just too much for her to handle.  i admire her for just even trying in the first place.  i think it takes an amazingly kind and selfless person to even contemplate taking on such a feat.  i think of david often.  he always had very stable vital signs, so he was moved out of our nursery and up to the next nurseries.  from what i know he was released after a month or so in the NICU to a long term care place.  i wish i knew what happened to him....well, that's not entirely true.  sometimes i wish i knew, but other times i'm glad i don't.  his story makes me so sad that i'm too scared to ask anyone if they know what happened to him.  i don't even know if he is still alive. 

a few days ago a new baby was brought into our nursery.  it was a transport from another hospital.  i think the woman delivered at her local hospital and the baby was stablized and then brought to this hospital.  they kicked me out when the baby first arrived so i wasn't able to hear anything about its diagnosis or prognosis.  i don't think that it was a premie though because it's really big.  most of the other babies are absolutely tiny and i could tell that this one was much bigger.  i don't know what, but something is very wrong with this baby.  you can just tell by looking at it.  its abdomen is extraordinarily swollen and big.  i try not to stare...(big C will yell at me again if i do)...i just pass by quickly when i first come in the room.  yesterday, jay came up to visit at night.  we were getting ready to leave RMH and go over to the NICU.  i decided to call first just to make sure that they weren't doing a procedure or anything where we wouldn't be able to go in.  the nurse on the phone asked me to wait about a half an hour before coming over.  i asked if everything was okay (i always do because i'm always terrified that Charlie is the reason no one is allowed in the room).  she told me that the baby at the front of the room died.  died.  it was there just a few hours ago, and now it is gone.  i hung up the phone, told jay what happened, tried to hold back my tears as hard as i could, but broke down within a matter of minutes.  i didn't know this baby, i didn't know the parents, i had no connection to any of them whatsoever....but i did have a connection.  the connection that is somehow formed between NICU parents that have never even met.  i felt their pain because that could have been Charlie.  i have been in shock for weeks now, and everything just came crumbling down with that baby's death....a baby i didn't even know.  that could have been Charlie.  that could have been Charlie.  when we finally went over to the NICU we saw the father coming out of the family room.  i tried to ignore him as best i could.  he looked lost...a vacant expression on his face.  i think that the rest of the family was in the room with the baby....their final moments together.  i couldn't even imagine at the time what they were going through and how their lives would change. 

how can there be so much pain in this world?  how could i have missed this all along.  i feel so blind-sided.  i didn't even know that babies died anymore.  i have never been a very religious person, but i do have some faith.  this entire experience is shaking that faith to its core.  if there is a god out there, how could he possibly take the life of a tiny baby.  a baby who hasn't even begun life yet.  how can he make these babies suffer like this.  i don't understand any of this. 

Tuesday, March 22, 2011

Present Day: Blogging Dummy

just wanted to throw it out there that i was so excited and thankful that i now have two followers!!!  i actually wanted to respond to both of you, but i can't figure out how!  so thanks for following me!  i'm not a snob for not responding, just kind of  a blogging idiot...i'm new to this :)

thanks for listening!

Monday, March 21, 2011

December 2007: Holding Charlie

big C did something for me today that no one has done yet.  she had me hold my son.  it's been over three weeks since he was born and all i've gotten to do so far is watch him lay there.  they let me change his diapers most of the time...and that's it.  that's the only way i can take care of my son.  so today big C asked if i had been able to hold him yet.  i told her no.  she said, "come on, you're going to hold your baby".  i was so apprehensive.  i told her that i was too scared to hold him because i was afraid that he would de-sat.  she said to me very frankly "that baby needs to be held.  hold your son."  so she brought the rocking chair in, brought in respiratory care so they could help hold the vent tubes, and after about 10 minutes of preparation, she took him out of his what-ever-you-call it and put him in my arms.  and my fears came true...he started to freak out and started de-sating badly.  she had to put him back and they had to airbag him.  i was crushed.  my son didn't even know me.  he didn't even want me to hold him.  we have had ZERO bonding....why wouldn't he freak out?  this strange person is trying to hold him.  once big C had his O2 saturation back under control she said we should try again.  are you kidding me??? did you not see what just happened?  i really didn't want to because i was so terrified, but she insisted.  so she sat me down, and put him back in my arms.  he didn't freak out!  he actually opened his eyes and looked right at me.  it was like it was the first time we had seen each other...the first time we had met.  i cried.  i was finally holding my baby.  something most people get to do within five minutes of delivering, but took me three weeks to do.  i said to him..."i know you're never going to remember this moment, but i always will".  it was the happiest day of my life.  better than my wedding day, better than the day he was born, better than any day i had ever had.  we were able to sit there for about 3-5 minutes before he started to fuss again and his O2 started to drop.  so big C had to take him back and get his O2 stabilized. 

and that was it...i know it doesn't sound like much, and i know in reality it really wasn't much at all. but it was a moment i'll always remember.  i was so filled with hope and love. 

and now i am starting to cry and have another breakdown, so i have to end this post.  there must be some cleaning i have to do right?  anything to distract me from the memories that i have had to bury so deeply. 

Sunday, March 20, 2011

December 2007: Big C Yelled At Me Today

well, i knew it was going to happen at some point.  up until now big C hadn't been on Charlie, but today she was.  when i walked in the nursery and saw her there at his pod, i thought..."ohhhhhh we go".  this woman just really scares the crap out of me.  she runs a DAMN tight ship, and i'm so scared of messing up....and i cell phone went off while i was sitting there with Charlie.  shit.  i knew i was supposed to have it turned off, but i just forgot, and with everyone wanting to know how he's doing and what's going on, i had it on.  "YOU'RE NOT SUPPOSED TO HAVE THAT ON IN HERE!!!!!". 

so after she yelled at me, i started to get to know her a little better.  remember how i told you about that poor baby next to Charlie?  i feel so sorry for him.  story goes that his mother had decided to give him up for adoption before he was born.  then, he had a stroke in the womb right before he was born.  they said that she had decided to give him up before she knew anything about the stroke, and i just hope and pray that that is true.  but this poor baby didn't even have a name.  they were just calling it baby ___(insert last name).  so big C said that she named him.  she said, "that baby needs a name, so i named him David".  i thought that was really nice.  every baby deserves a name.  i think big C has kind of taken David under her wing.  she has signed up to be his primary nurse.  side note: in this NICU every baby has at least one or two primary nurses.  it seems like the nurses a lot of times get to chose what babies they want for their primaries.  so far Charlie has one primary nurse that does the evening shift, and one that does the midnight shifts.  both are so nice and i love both of them. 

so anyway, since big C is David's primary now, she will be in our pod most of the time.  looks like big C and i are going to get to know each other pretty well...

things have been really hard.  jay is still trying to work, so he spends most of the week back home while i stay here at RMH.  then he comes up on the weekends.  he does come a few nights during the week just for a couple hours.  luckily his boss has been extremely understanding about the situation and has been giving him a lot of time off.  thank god for RMH.  i don't know what i would do without it.  where would i stay?  there's no way we could afford a hotel every night, and meals on top of that.  i would hate having to drive to the hospital every day from home -- it's an hour and 20 minutes one way.

Charlie has had a few visitors.  my mom has been amazing about coming up whenever she can.  the thing i love about my mom is that she's pretty easy to please, and i never feel like i have to entertain her. she knows that i just want to stay with Charlie, so she's perfectly content to sit there with me for 8-10 hours at a rip.  she reads, knits, sometimes dozes a little.  it's nice to have some company.

Charlie still isn't improving.  it's been a few weeks now and he's not making the progression that we all were expecting.  i'm starting to get really worried about the long term effects of being on a vent. they said that babies can handle vents for a little while, but if they're on them too long they can suffer permanent lung damage.  the longer he's on it, the worse things look.  they can also suffer eye damage from being on oxygen for so long.  everyone keeps telling me that the NICU is a roller coaster ride.  there are a lot of ups and downs, but for us so far, there haven't been very many ups.  just when they think they can lower the pressures on his vent, a bad blood gas comes back and they have to raise them up again.  i'm getting really frustrated because i feel like they're trying to move him too fast.  they get a good blood gas back, so they lower the pressure.  then, instead of giving him some time to get used to that new pressure, they lower it again if the next blood gas will allow it.  then, the next thing that happens is that the next blood gas is terrible, and they have to raise the pressures back up even higher than before.  it's really pissing me off.  it happens every fucking time.  i know exactly what is going to happen, but they won't listen to me.  i would much rather take some slow baby steps, rather than take one step forward TOO FAST, and then end up having to take two steps backwards.  i really get frustrated with the doctors.  yeah yeah yeah, i get went to medical school, you're smarter than me, blah blah blah...shove it up your ass.  but you know what?  just because i didn't go to medical school doesn't mean that i'm an idiot.  i went to an awesome college, graduated, went on to an extremely competitive phd program.  okay yes, i dropped out of grad school because i hated it, but just the fact that i made it into that program shows that i have half a brain.  i'm not stupid.  i sit with Charlie ALL day, EVERY day.  i am his mother...the only one he has.  i see all the things that happen during his days and you really can learn a lot by observing and picking up on patterns.  i feel like i should start writing down my predictions so then the doctors can see that i know what's going to happen in some instances.

looking back, i realize now that i was in extreme denial about Charlie.  what was on my mind at this point was the intense worry about what his life would be like.  would he be able to play sports?  would he have learning disabilities?  would he have to be on some kind of respiratory support?  i was terrified about what his quality of life would be.  i should have been worried about whether or not he was going to live.  it's not that i didn't realize that death was a possibility, it's more like i was just too scared to even entertain that possibility.  i couldn't even go there.  i even said to my mom that i thought that if he was going to die he would have died already.  i thought that we were somewhat "out of the woods" on the live or die question. 

i think that it was at this point too that my anger started to build.  anger and bitterness toward the whole world.  why is Charlie sick?  why can't i hold him?  why does everyone else i know get to have a problem-free pregnancy and pop out a healthy baby? how come there are so many people who drink, smoke and do drugs while they are pregnant and they don't have any problem?  why is this my life?  why is this happening to me?  more importantly, why is this happening to Charlie?  i know that he is suffering and it is killing me to see it. 

Friday, March 11, 2011

December 2007: Bad Day

i came into the NICU this morning and the second i looked at Charlie i knew something was wrong.  he wouldn't open his eyes, he wasn't moving at all, he was just laying there.  yesterday he had been doing so well...he was taking almost all his own breaths (lots of purple lines on the vent) and the pressures on the vent were the lowest they'd ever been. he was close to being moved to a cpap machine.  today, he isn't taking any of his own breaths...none.  they also had to raise the pressures on the vent.  when i asked what the hell was going on they told me that early in the morning he had pulled the vent tube out (extubated himself), so they had to re-intubate him, and they gave him morphine to help with the pain of being intubated.  i'm really worried, but they seem to think it's no biggie.  he's just a completely different baby today.  i knew the second i saw him that something was different.  i don't like the morphine, i don't like what it does to him. 

later in the day things got worse.  Charlie stopped urinating.  they don't know why, but every time they change his diaper they weigh it so they can keep track of input vs. output.  he had dry diapers, so they ended up having to give him a diuretic, lasix.  this started him peeing again, but as soon as they stop giving it to him he stops peeing. 

i want to know what the fuck is going on.  what is wrong with my son?  the doctors seem to be getting more and more concerned, and they have no answers for us.  i asked "hope-you-burn-in-hell" doctor if it was possible that all these things that are going on are just little quirks or coincidences that will all eventually resolve themselves.  he said he doesn't think so.  he thinks Charlie has some kind of disorder that is causing all this and they don't know what it is. 

the geneticist has been in to see Charlie. they asked if i wanted to talk to him, and i asked if he had any answers for me.  when they told me no i said that i didn't want to see him.  i fucking hate this.  something is wrong with my son and nobody can tell me what.  nobody knows what is going on, or what the prognosis is.  i hate this so much.  i need to know.  i need to know what is going to happen to Charlie. 

the march of dimes woman keeps coming around to me.  she's nice, but she keeps asking if i need any support and i just want to be left alone.  she asked if i wanted to have a photo session with Charlie and then do some scrapbooking with the pictures.  i said no.  i'm too scared of taking pictures.  what if the worst happens?  i wouldn't ever be able to look at the pictures.  i would hate myself for making a scrapbook when i should be by his side.  i can't leave his side, but i'm so scared of getting close to him...getting attached. 

i hate this. 

Thursday, March 10, 2011

December 2007: Big C et al

i'm starting to get to know the staff here in the NICU.  there are over 100 nurses here though, so i only know a few of them.  there are several doctors and i think i've met all of them.  wait, rephrase...there are several attendings, all of whom i've met, but there are ton of other "doctors"....residents, interns, blah blah blah. 

i definitely have my favorites and others that i don't like.  of the doctors, i actually have to say that i like the foreign attendings much better than the americans.  i don't know why this is, but they seem to be so much more caring and are actually LOOKING at Charlie, rather than just reading a chart.  there is one guy here that i really have a problem with.  he's such a pompous asshole.  he walks around like he's god's gift to medicine.  and i got PISSED the other day because i always try to be there when they round on the babies.  they do it twice a day.  anyway, this piece of shit doctor stood right at the front of the nursery for the "rounds", and didn't even go around and look at the babies.  i don't think he gives two shits about these babies.  i was sitting right there and he completely ignored me.  i don't care who you think you are, i have a right to know what is going on with my son.  and how can you possibly do your job well if you don't even look at your patients?  observation is actually a very powerful tool.  so he's the worst, and then i have two favorites.  one of them is just an extremely caring, kind man who seems to take his time and genuinely be concerned about Charlie.  the other is a bit of an odd duck, but i think he's an amazing doctor.  i hope that these med students appreciate how lucky they are to round with him.  it probably takes 3 times as long when he's doing rounds, but he is so thorough and really stops and thinks about each baby.  as a mother, i couldn't ask for more (realistically) from a doctor.

the nurses have been wonderful.  again, there's one woman that's really pissed me off.  she's just been very disrespectful to jay and me.  she ignores our questions, seems annoyed when we ask, and the thing that really got to me was the way that she was man-handling Charlie.  he's so fragile and she was being extremely rough with him.  jay and i were really mad, so he went and talked to one of the attendings and specifically asked that she never be assigned to Charlie again.  the doctor said he would try to accomodate our request. 

and theeeeennnnn.....there's big C.  big C is a nurse (she has a name obviously, but i'm trying to keep it ocnfidential).  anyway, big C is this big, older, black woman who scares the absolute hell out of me.  she hasn't been on Charlie as of yet, but she's been on a couple of the other babies in our nursery.  she's terrifying.  i think this woman would take hell on with a 5-gallon bucket of water.  she runs a damn tight ship, and she got on my case the other day because she didn't like where i was leaving my bag in the nursery.  she told me to keep it closer to me.  then, i got in trouble with her again because she saw that i was looking in the doctor's direction when they were talking about one of the other babies.  she came over to me and said "do you have a question?  did you need something".  (keep in mind this is in a very intimidating voice).  i didn't know what she was talking about so i just said no.  then she said..."well i saw you looking at the doctors and thought you might need something.  you know here in the NICU you have to 'not hear' what they are saying about the other babies.  you just need to focus only on your baby."  i felt like a 3rd-grader that had just been reprimanded for misbehaving. 

so that's some of the staff.  i will get to know these people more in the next several weeks...some of them i will never forget and they are more a part of my family than the people that i share blood with. others...i hope they rot in hell for the way they treated my son. 

Tuesday, March 8, 2011

December 2007: Where. The Hell. Am I?

it's amazing to me what time will do.  while we were in the NICU, i just remember going through it and dealing with it because i had no other choice.  now looking back, i realize just how awful, confusing and emotional it was.

i have suddenly been thrust into a world that i didn't even know existed.  right now, i really just want to keep to myself.  i've pretty much always been like this, but now more than ever i don't want to see anyone or talk to anyone.  a lot of the people at the ronald mcdonald house and in the NICU have become friends and support one another, but i don't want this.  this isn't the place for me to start making friends. i just want to come and go, unnoticed, and only be with Charlie.  i don't want to see or hear anything other than my son.

so despite my desires to be left alone, people still talk to me.  there is a woman at RMH that has been there for two months already.  her baby was born in october and her original due date wasn't until february.  at first i didn't even believe her because i didn't think that was possible.  now i understand...he was a 23 weeker...there are many 23-weekers, some make it, some don't.  RMH is filled with every emotion i've tried to avoid my whole life...sadness, anger, hope, frustration, confusion, and love.  there are people there whose children are being treated for cancer...heart defects...premature birth...lung problems...intestinal can there be so many sick babies and children in just this small area?

if i think that RMH is a whole different world, nothing could have prepared me for the things i would encounter in the NICU.  Charlie is hooked up to a ventilator.  he was switched from the vent that does a lot of rapid pulses to a less intense one that is supposed to simulate real breathing better.  this vent actually allows him to take some of his own breaths if he wants to.  all the lines on the screen are green, except when Charlie tries to take his own breath, then there is a purple line.  i am learning new terms left and right...o2 saturation, desat (desaturation...when his o2 saturation dips below an acceptable level), billirubin, jaundice, lung disease, mechonium, blood gases, pulmonary hypertension...

there are monitors and alarms constantly going off.  if his o2 saturation drops below 88 for too long an alarm goes off.  there are about 6 other babies in Charlie's nursery.  the nurseries are numbered according to how bad your baby is.  nurseries 1 and 2 are the bad ones -- you don't want to be here.  however, all the babies start off here, no matter what their condition is.  then, you progress up through the nurseries as your baby gets better and better until you eventually spring from the NICU.  they told us that they usually tell parents to plan on their baby being in the NICU until its original due date, which for us would be mid-january.  i couldn't believe that they thought Charlie might be there that long.  however, they said that a lot of times they get out before the original due date, so i'm really hoping and assuming that we will all be home by christmas.  what a perfect christmas present that would be -- all of us home.

i can't believe how many babies are here in the NICU.  it seems that nearly all of them are here because of prematurity.  some of them are so tiny...just over 1 pound.  Charlie looks like a giant compared to some of these other babies.  while most of them seem to be here because of prematurity, there are some others there too.  the baby that shares Charlie's pod has such a sad story.  his mother had actually decided to give him up for adoption before he was born.  then, when he was born they discovered that he had had a stroke while still in the womb.  i was there when he first came into the nursery, and that first day he just cried and cried and cried.  it was such a different kind of cry though...someone later told me that it was a "neurologic cry".  it's so weird to look at the difference between him and Charlie. at first, i thought i'd love it if Charlie had this other baby's vital signs...his respiratory rate was great, his o2 saturation was perfect, his heart rate is perfect (though Charlie's heart rate has been great this whole time).  it just goes to show that you never know what's going on inside the body...this baby has great vitals, but from what i gather he has severe brain damage.  they don't know yet the extent of the damage the stroke caused.

charlie seems to be doing this point everyone just thinks that he's a little premature and is just a little slow at getting better.  one of the doctors told me that they were trying to get him off the vent within the next couple of days.  apparently it can damage the lungs permenantly if he is on the vent too long.  so...we just need to get him off the vent, get his jaundice resolved, get him will take a little while, but we're still really hoping for christmas.

i've basically planted myself right by Charlie's side.  i get there around 10:00 in the morning, stay with him all day until about 8:00 or 9:00 at night, then go back to RMH, eat dinner, stay up until about 1:00 in the morning researching prematurity, then call the NICU to check on Charlie, then go to bed....then i wake up, and start the whole thing over again...

Friday, March 4, 2011

December 2007: Day of life 1-4

oh god, where did i leave off?  i had just had Charlie and they immediately took him away up to the NICU.  i kept begging them to let me go see him, but i couldn't even get up without fainting so they wouldn't let me go.  finally later that night they found a wheelchair and jay took me up. 

seeing my baby in his pod...i didn't know what to do.  i didn't know what to feel.  i always had heard that you instantly are connected to your baby and instantly love them more than anything.  honestly, i didn't feel like that.  i felt weird.  i looked at him and i didn't feel like his mom.  i couldn't hold him, i could barely touch him.  he didn't open his eyes for me so we couldn't look at each other.  i was heartbroken. all this time i wanted so badly to be a mom, and now i was one, but i just didn't feel it. i was failing.  i was looking at this little person, and i felt like i was completely failing him. 

i'd never seen a NICU before...shit, i'd never even heard of the NICU until about 24 hours ago.  there were so many monitors and alarms going off.  it was so loud.  my poor son was on a type of ventilator that did something like 100 little breaths per minute, so it was extremely loud.  he had tubes and wires everywhere.  he was so tiny. 

the doctor came and talked to us.  honestly, i don't even remember what she said.  everything was such a blur.  they were throwing all this information at us and using words and terminology i'd never heard before.  it was like i wasn't processing anything they were telling me. 

once we got back out into the hall ready to take the elevators i felt suddenly dizzy.  jay said that i passed out again.  he ran back into the NICU to get someone to help me.  they actually just said, "oh, we don't do anything with adults, you better just take her back down to the maternity ward.  i don't remember waking up until we were already back down there. 

i got into bed and just went to sleep.  i was exhausted...34 hours of labor, forceps delivery, 4th degree lacerations and my son in the NICU.  i just prayed that when i woke up in the morning things would be different.  my son would be totally fine and would be in the room with me and i would get to hold him.

the next day, my dreams from the night before didn't come true.  i woke up to a cold, empty room.  i called up to the NICU to check on Charlie, they told me more stuff i didn't comprehend.  jay got to the hospital and knew that something was wrong with me.  i wasn't very coherent...just kind of laid there, too exhausted to pick my head up.  he said that i'd never looked so pale.  a while later the doctor came in and said that my blood counts were very low and that they wanted to give me a transfusion.  so...two units of blood later i started to perk up a little.  theeeeeeennnnn the headache came.  anyone who has had the epidural headache knows exactly what i'm talking about.  uuugh, that awful, horrible headache that comes from the place where you had the epidural leaking cerebral spinal fluid (i think that's what happens with this headache).  it wasn't too bad if i was laying flat, but as soon as i sat up i thought my head was exploding.  the anethesiologist came in and talked to me about it.  he said that they could put a patch in to seal the hole, but this procedure sounded worse than the epidural itself, so i opted to just load up on motrin.  i was extremely worried about taking any drugs because i was worried about it getting into the breast milk i was trying to pump.  what an idiot...i should have just taken the damn pain killers.  

they wanted to send me home the next day, but i was still extremely unsteady on my feet, so i said i wasn't comfortable leaving.  they let me stay an extra day...thank you insurance, how generous.  i'm positive that whoever makes up these insurance policies has never had a baby.  same thing with whatever jackass decided that speed bumps in a hospital parking lot were a good idea.  try going over those after you've just had a baby. 

i was released on friday.  i was scared.  i didn't know what to do.  we lived over an hour away from the hospital and Charlie was still in the NICU.  no one knew at that time just how serious his condition was.  they thought we were only going to be there a few days.  the nurses were nice enough to get me the phone number for the local ronald mcdonald house.  i called them and luckily they had an open room.  jay drove me home to pack some things, and then we drove back up to the hospital,  checked into the ronald mcdonald house, took a nap, and then went back over to see Charlie.

i was starting to feel more like a mom.  it wasn't the start to motherhood that i wanted, but i was starting to feel more and more attached to Charlie.  he had opened his eyes a few times and i was able to smile at him.  i still hadn't been able to hold him yet though.  i was desperate to, but i knew that i just couldn't...he was too unstable.  but i was starting to see where this little baby could become the love of my reason for waking up. 

Present Day: Sorry Ellen

okay...i owe ellen degeneres an apology.  the other day i went on a bit of a rant with my post about not liking who she chose to give a car and money to.  that wasn't very nice of me.  i let jealousy get the best of me...not the first time, nor the last...

anyway, i was watching ellen today and i just took a step back and remembered why i started watching it in the first place.  it just gives me a semi-break from all the pain.  for a few minutes, i get a little lost in just watching something totally meaningless (not that her show is meaningless, but i usually don't feel like crap after watching it). 

so, sorry ED...i hope we can still be friends :)

Tuesday, March 1, 2011

Present Day: Ellen D

she's not aware of this, but ellen degeneres and i are best friends.  so it's kind of a one-way friendship, but that's okay.  what could be better?  she's been there for me through really bad times, and i don't even have to get her a birthday present. 

for a while there i broke up with ellen (for reasons that i'll get into later).  however, i've recently decided to take her back and so i've been dvr'ing her show every day.  i really love her show most of the time.  so since we're best friends, i feel the obligation to give some criticism.  again, what could be better?  i can criticize all i want, and we don't get into a fight!

so the other day she was showing her "big truckin deal" and i got really mad at who she decided to bless with a new car and $10,000.  it was a woman who sent in a video saying that she was in school and gotten pregnant by her boyfriend (fiance maybe, i don't know).  the school didn't like this so they took away her scholarship and she and her partner have been struggling to make ends meet.  then their car keeps breaking down so she was asking ellen for help.  that's it?  seriously, that's your sob story?  you seem like a nice girl, but i have friends in my support group who would eat your story for a morning snack.  ellen, i know it's your money to do what you please with, but damn dude, can't you find someone else who's having just a little bit rougher go of things?  this woman got pregnant accidentally, and i'm in over $25,000 just trying to have a baby (ivf is a miracle, but it's also really frigging expensive).  okay, let's not talk about me because i feel like a real ass saying i'm more deserving.  what about the thousands of other people that are in debt up to their eyeballs trying to pay for fertility treatments, or trying to pay for the medical bills that come with having an unhealthy baby.  i know there's millions of other situations that people are in, but my whole life revolves around having babies, so....

this brings me to reasons #67 and #68 that i'm going to's ellen's money, not mine.  she can do whatever she wants with it and it's not up to me to decide who to bestow kindness on.  who am i to say that one person is more deserving than another?  reason #68...i never stop to think that maybe other people have a story too.  maybe this woman she gave the car and money to has had a lot of other problems that we don't know about.  you NEVER know what someone has either gone through or is going through.  if you look at me walking down the street you'd never know that i have three babies that have died. 

my head tells me that i need to be much more understanding about stuff like this, but i'm human, and my heart kicks in, and jealousy raises its ugly head.  the jealousy of this woman having a healthy baby and not having to work her ass off for it, not having to endure pure misery just to get there.  she caught a break that ellen found her story compelling enough to give her stuff.  jealousy.  no wonder it's one of the 7 deadly sins.