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. 

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. 

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". 

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. 

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. 

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?

http://thriftydecorchick.blogspot.com/

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 (again....dvr).  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 check...to 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.