Customer Reviews

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.