i want the weekend to be over already. i want to go to Stanford and get these appointments done with.
today i feel like i don't want to be pregnant anymore...not only do i feel like a cow and nothing is comfortable to wear but i could really use a night of some hardcore drinking.
this week has been just bad.
I was told not to dwell on what is going to be different but to remember that there are going to be plenty of things that will be "normal" when Olivia gets here. but truthfully i don't want to get my hope up about it because there is a mortality rate for a reason... there are mothers that don't get to see there babies because they didn't survive through the battle.... i try to think about how happy the day will be when she gets here but it makes me freak out .
not having Chris here is really taking a toll on me. i am so unbelievably lonely and i HATE living with my parents AGAIN. i miss having my own space my own kitchen some where that is home. i hate having to ask (beg) my parents to go to lunch with me... and on top of it all friends... you know when i got pregnant i knew there would be some fall out but seriously... a lot of my friends don't even text me anymore.. and i swear i don't talk to them about being depressed and what not i am still me i just cant drink. but its like i have a disease and HLHS is something there future children can catch. i get that i am far away and that people have lives but seriously you cant even text me?
i am going stir crazy locked up here. and there is nothing i can do about it ... plus i have no money so i cant even take the train or something somewhere...
I'm done with this year.
i knew that this was going to be hard... but this isn't something i thought nor do i want to do alone.
Saturday, September 25, 2010
Friday, September 24, 2010
Saturday, September 18, 2010
if there is a god ... then why?
we are not getting any breaks from all this bad shit going on in our lives. we tried to get chris home and it just inst happening.
i am tired and stressed out beyond return. i dont want to deal with this anymore!
why is this happening to us.... what did we do that was so horrible in our life to have to go through all of this? this isnt even the worst.
if you are listening, reading god.... why? why cant you just give us a fucking break ?
i am tired and stressed out beyond return. i dont want to deal with this anymore!
why is this happening to us.... what did we do that was so horrible in our life to have to go through all of this? this isnt even the worst.
if you are listening, reading god.... why? why cant you just give us a fucking break ?
Wednesday, September 15, 2010
showing off my little girlie pie!
when i went to stanford they gave a me a ton of pics... so i will show you :)
so this is all going on inside here:
no more pictures please! she was getting so mad that we where poking at her all day from 10am to 2pm jeeze!
wave bye bye little one! <3 i love these ones of her hands i have one of her feet but it is very dark and you cant really see it to well....
so this is all going on inside here:
we got a few pictures of her with her mouth open
her little face... such a sweet little face
budda belly >-<
no more pictures please! she was getting so mad that we where poking at her all day from 10am to 2pm jeeze!
wave bye bye little one! <3 i love these ones of her hands i have one of her feet but it is very dark and you cant really see it to well....
well as for news i guess... umm tomorrow if chris's flight doesnt get canceled or he doesnt get on the flight he will be here by tomorrow evening! yay. that will be nice i told him his job is to keep me happy to be my yellow crayon i know he is so in turn i can be an extra happy lady for sweet little olive!
the 28th is our appointment with dr dizzen (sp?) my high risk obgyn and i also get to do a few more appointments too... thankfully i got the hubby here to share the driving and what not with me :D
Sunday, September 12, 2010
stanford :D
OK so this is a little behind but Stanford went great. the hospital is located near shopping centers and a nice park area. i believe that getting a second opinion was a good choice.
Olivia's passage from the left atrium to the right is in fact open and they think she may have another defect in that area that is helping her. like there are more than one hole letting blood flow through the left to the right.
they also said that if the valve was as bad as the doctor said it was her chance of survival in the womb was not really there.they rate it on a scale and Olivia was no where near meeting the standards for the cath procedure. i guess it is like a +4 and she isn't ... so that's good. the she may not even need to get it i was so happy to hear this!
My appointment started at 10AM and i was in with the faternal cardiologist until 1230 lol they said i was wonderful because i went in there knowing a lot and had my questions for them. Plus i think of my self as a pretty realistic person and when it came down to talking about the shitty parts of it all i didn't lose my shit and i was still able to talk to them like an adult would.
3 different people came in to take pictures of the great wiggly one we call Olivia :D she is the most wiggly baby ever hahaha. plus i think she is a lot like me... she doesn't like being fucked with and she was not happy about the wand being poked at her. but to say the least i am much more confident about Stanford and their staff then i am or ever felt with ucdavis.
After that appointment i was sent upstairs to another appointment for an ultrasound and at this one they took pictures of all of her! she is one pound now !!! and we got great pictures of her . we have ones of her mouth open too! she was beyond pissed though could have been that i didn't eat at all for that whole time i was starving! she was kicking and everything! but they gave me a long strip of pictures for my keepsakes ... it was really nice to see my sweet angel.
so i have another appointment with Stanford on the 28th for the high risk OBGYN and the surgical team. i am rather excited about that but... i am not looking forward to them playing in my vagina. oh well its for the best. but the cool thing about Stanford i will have a social worker and a lady who schedules all my appointments together a coordinator :) how sweet is that !!!! they where all very awesome to say the least.
and one more bit of good news... Chris should be on his way home very very soon... the assignment thing is not humanitarian it is the exceptional family member program and it takes 4-6 weeks to process but his first shirt is pushing really hard to get him 30 days of leave to be here with me and get him here for a few appointments at least. so we are looking forward to that !
well OK that is what good news Friday brought to me
:D
Olivia's passage from the left atrium to the right is in fact open and they think she may have another defect in that area that is helping her. like there are more than one hole letting blood flow through the left to the right.
they also said that if the valve was as bad as the doctor said it was her chance of survival in the womb was not really there.they rate it on a scale and Olivia was no where near meeting the standards for the cath procedure. i guess it is like a +4 and she isn't ... so that's good. the she may not even need to get it i was so happy to hear this!
My appointment started at 10AM and i was in with the faternal cardiologist until 1230 lol they said i was wonderful because i went in there knowing a lot and had my questions for them. Plus i think of my self as a pretty realistic person and when it came down to talking about the shitty parts of it all i didn't lose my shit and i was still able to talk to them like an adult would.
3 different people came in to take pictures of the great wiggly one we call Olivia :D she is the most wiggly baby ever hahaha. plus i think she is a lot like me... she doesn't like being fucked with and she was not happy about the wand being poked at her. but to say the least i am much more confident about Stanford and their staff then i am or ever felt with ucdavis.
After that appointment i was sent upstairs to another appointment for an ultrasound and at this one they took pictures of all of her! she is one pound now !!! and we got great pictures of her . we have ones of her mouth open too! she was beyond pissed though could have been that i didn't eat at all for that whole time i was starving! she was kicking and everything! but they gave me a long strip of pictures for my keepsakes ... it was really nice to see my sweet angel.
so i have another appointment with Stanford on the 28th for the high risk OBGYN and the surgical team. i am rather excited about that but... i am not looking forward to them playing in my vagina. oh well its for the best. but the cool thing about Stanford i will have a social worker and a lady who schedules all my appointments together a coordinator :) how sweet is that !!!! they where all very awesome to say the least.
and one more bit of good news... Chris should be on his way home very very soon... the assignment thing is not humanitarian it is the exceptional family member program and it takes 4-6 weeks to process but his first shirt is pushing really hard to get him 30 days of leave to be here with me and get him here for a few appointments at least. so we are looking forward to that !
well OK that is what good news Friday brought to me
:D
Tuesday, September 7, 2010
good news less depressing
sorry for the stream of depressing post... still trying to get my head around this and with out the embrace of my husband it makes it harder to slip into these poopy moods i guess...
so today woke up to take my dad to the doctors and before that i got to talk to Chris for a short moment and then!!!!! STANFORD called me... my mind must have shot some powerful rays to them letting them know i was freaking out and i needed to get seen for my sanity. i have two appointments this Friday a echo at 10 and a ultra sound at 1 ... yay i get to see our girlie pie <3 i cant wait.
ALSO Chris let me know that not only did my package get finished but the first they will start paying him for me... which is awesome seeing how the driving and the eating is really hurting or pockets and accounts!so this also means that tomorrow he will march his butt into the office and get his paper work started to come home to be with OLIVE, EVELYNN, and MEEEEEEEEEEEEEEEEEEEEE!!! thank god ... seriously then maybe i can get some sleep.
speaking of sleep i keep having these daydreams/dreams of sally from nightmare before Christmas and also the corpse bride... i imagine this is what Olivia will look like... and if you do know me personally you know i have a wild imagination and i don't think this is really helping any.
well i am excited about going to the bay and going to Stanford it will be nice plus i will be getting out of the house! and tomoroooooowwww i get to hear baby olives heart i have a obgyn appointment.
hopefully this week will continue to be a good one and i can stay positive and upbeat.
time to go eat the belly calls.
so today woke up to take my dad to the doctors and before that i got to talk to Chris for a short moment and then!!!!! STANFORD called me... my mind must have shot some powerful rays to them letting them know i was freaking out and i needed to get seen for my sanity. i have two appointments this Friday a echo at 10 and a ultra sound at 1 ... yay i get to see our girlie pie <3 i cant wait.
ALSO Chris let me know that not only did my package get finished but the first they will start paying him for me... which is awesome seeing how the driving and the eating is really hurting or pockets and accounts!so this also means that tomorrow he will march his butt into the office and get his paper work started to come home to be with OLIVE, EVELYNN, and MEEEEEEEEEEEEEEEEEEEEE!!! thank god ... seriously then maybe i can get some sleep.
speaking of sleep i keep having these daydreams/dreams of sally from nightmare before Christmas and also the corpse bride... i imagine this is what Olivia will look like... and if you do know me personally you know i have a wild imagination and i don't think this is really helping any.
well i am excited about going to the bay and going to Stanford it will be nice plus i will be getting out of the house! and tomoroooooowwww i get to hear baby olives heart i have a obgyn appointment.
hopefully this week will continue to be a good one and i can stay positive and upbeat.
time to go eat the belly calls.
Monday, September 6, 2010
a post about feelings/ and a note to my girl
"When you come to the edge of all the light you know and are about to step into the darkness of the unknown, faith is knowing that one of two things will happen. There will be solid ground to stand on or you will be taught to fly."
a few things... i had an OK few days... well my mom and i did get into it and it was pretty bad... i stayed up all night crying and sad. we where screaming at each other and it was horrible. poor baby girl must have been terrified... i felt so guilty i just held my tummy and cried... "please forgive me olive...mommy isn't mad at you ... mommy loves you with all of her heart".... well i am finding things that hit a spot and things that make me either say "YES " that's what i want to say or "that's how i feel" i just thought I'd share...
what not to say to grieving person(s)...
“I know what you are feeling”
-No, you don't. And you really don’t want to. No matter what you have been though, no one knows what another person's pain is like. It is true. Even in the same situation, different people experience pain differently.
“It could be worse.”
-Yeah, it probably could. But I don’t want to think about that either.
“You have to hold it together. Be strong”
-I’m sorry my grief upsets you. I’ll try to hold it together for your benefit, um-kay?
“Call me/pm me/text me if you need anything.”
-Odds are, we won't. Odds are we are so engrossed in what we are dealing with that having to actively seek help means we won't get it. If you want to help, do something productive and proactive. This part doesn't really work here very well, unless you pm the person regularly and ask how they are doing.. AND mean it. If this is an IRL situation for you, You should call and say 'I'd like to do some chores for you, I'd like to come cook a meal/bring leftovers, straighten up....Ect. It doesn't often help to ask what they need done because it is hard to ask people to do stuff you normally do and they don't want to put you out. So YOU should make a proactive effort to decide what to do.
“How are you?” (and not mean it.)
-You can tell the difference between people who ask because they want to know and the ones who ask because they feel as though they have to or who are only interested in short, positive answers. They never are very concerned with the actual answer to the question.
“It will be okay”
-Maybe. Someday. But I can't conceive of it ever being okay right now or for the foreseeable future. I'm not going to wake up tomorrow all better. We will heal, but it'll never be 'okay'
Although i have not lost my little girl i have lost a lot of what i thought was going to be... this maybe hard for some one to understand but ... i was one of the woman that was looking forward to a cranky baby and the feedings ... the "normal" baby things... part of that storybook life i dreamed of was shattered the day they told me about Olivia's heart... i get this maybe sad/depressing/ irritating but i do have all of these thoughts going through my mind. a friend of mine said to me ":she is a blessing no matter what" she is a blessing but i don't think some one who hasn't had to go through something like this can really wrap their head around the pain that grows inside of you as your baby gets closer to birth you know you need faith and you know you must be strong but truly the stress and anxiety of it all eats away at you.
When I became a heart mother...
One day my world
came crashing down,
I'll never be the same.
They told me that
my child was sick...
I thought, am I to blame?
I don't think I can handle this...
I'm really not that strong.
It seemed my heart
was breaking...
As, I'd loved her for so long.
I will not give up on this child...
despite your best "advice".
I will give my child a chance...
No matter what the price.
And I will learn all that I need...
to help my child to thrive.
I'll even use that feeding tube...
My child will survive!
Will he require therapy?
What if he can't gain weight?
Alright God I can do this...
I will not curse our fate.
The feeding pump beeps,
at 3:00 a.m.
It serves as my reminder...
How many parents would
welcome that sound?
Tomorrow Lord,
I will be kinder.
Another angel earns
their wings...
and I run to my sleeping
child's bed...
I watch her then, for
quite awhile...
Bend down and kiss her head
Then I cry for the parents
whose lives have been broken,
And I look to God
wondering why?
Oh Lord, I just can't
know your ways...
No matter how I try.
And yet, I trust You to
hold her life,
And guide us through
each day
My mind says savor each
moment she's here...
But my heart whispers,
"Please let her stay".
From... pacing the
surgical waiting room...
to sitting by her hospital bed...
From... wishing for a
good night's sleep...
to learning every med...
From wondering will
she be alright?
to watching her reach
out her hands.
With every smile, my
heart just melts..
despite life's harsh demands
For all who see
that faded line...
I look to them and smile...
You see, my child is
loved so much...
I would face any trial.
That same scar I trace
with my finger...
It's the door to her
beautiful heart
I never guessed how
much I'd love her...
Just as YOU loved her
right from the start
A heart mom is
always a heart mom...
Now wise beyond her years
And for those who have
angels in heaven...
Our hearts share in
all of your tears.
Everyday I will strive
to remember...
You chose me for her
and no other
And I will embrace
that beautiful day...
When I became a "heart mother".
~Stephanie Husted
**** My baby Olivia... if/when you ever read this please know that we love you and we want you to live your life to the fullest... we want to take you to your first sleepover...help you ride a bike... hold you when that first boyfriend breaks your heart...we want to help you get ready for your prom...get you your first car...and watch you get married... i can see it now you look like an angel in your gown...although your mommy and daddy are very scared about the road to come we never ever will stop loving you you make us so happy... i knew you would give us "hell" and baby girl you are but we will always be by your side and be there for you when you need us! have faith in yourself and in god and everything will be better in the end i love you my little olive and so does so so many people don't ever forget that!****
a few things... i had an OK few days... well my mom and i did get into it and it was pretty bad... i stayed up all night crying and sad. we where screaming at each other and it was horrible. poor baby girl must have been terrified... i felt so guilty i just held my tummy and cried... "please forgive me olive...mommy isn't mad at you ... mommy loves you with all of her heart".... well i am finding things that hit a spot and things that make me either say "YES " that's what i want to say or "that's how i feel" i just thought I'd share...
what not to say to grieving person(s)...
“I know what you are feeling”
-No, you don't. And you really don’t want to. No matter what you have been though, no one knows what another person's pain is like. It is true. Even in the same situation, different people experience pain differently.
“It could be worse.”
-Yeah, it probably could. But I don’t want to think about that either.
“You have to hold it together. Be strong”
-I’m sorry my grief upsets you. I’ll try to hold it together for your benefit, um-kay?
“Call me/pm me/text me if you need anything.”
-Odds are, we won't. Odds are we are so engrossed in what we are dealing with that having to actively seek help means we won't get it. If you want to help, do something productive and proactive. This part doesn't really work here very well, unless you pm the person regularly and ask how they are doing.. AND mean it. If this is an IRL situation for you, You should call and say 'I'd like to do some chores for you, I'd like to come cook a meal/bring leftovers, straighten up....Ect. It doesn't often help to ask what they need done because it is hard to ask people to do stuff you normally do and they don't want to put you out. So YOU should make a proactive effort to decide what to do.
“How are you?” (and not mean it.)
-You can tell the difference between people who ask because they want to know and the ones who ask because they feel as though they have to or who are only interested in short, positive answers. They never are very concerned with the actual answer to the question.
“It will be okay”
-Maybe. Someday. But I can't conceive of it ever being okay right now or for the foreseeable future. I'm not going to wake up tomorrow all better. We will heal, but it'll never be 'okay'
Although i have not lost my little girl i have lost a lot of what i thought was going to be... this maybe hard for some one to understand but ... i was one of the woman that was looking forward to a cranky baby and the feedings ... the "normal" baby things... part of that storybook life i dreamed of was shattered the day they told me about Olivia's heart... i get this maybe sad/depressing/ irritating but i do have all of these thoughts going through my mind. a friend of mine said to me ":she is a blessing no matter what" she is a blessing but i don't think some one who hasn't had to go through something like this can really wrap their head around the pain that grows inside of you as your baby gets closer to birth you know you need faith and you know you must be strong but truly the stress and anxiety of it all eats away at you.
When I became a heart mother...
One day my world
came crashing down,
I'll never be the same.
They told me that
my child was sick...
I thought, am I to blame?
I don't think I can handle this...
I'm really not that strong.
It seemed my heart
was breaking...
As, I'd loved her for so long.
I will not give up on this child...
despite your best "advice".
I will give my child a chance...
No matter what the price.
And I will learn all that I need...
to help my child to thrive.
I'll even use that feeding tube...
My child will survive!
Will he require therapy?
What if he can't gain weight?
Alright God I can do this...
I will not curse our fate.
The feeding pump beeps,
at 3:00 a.m.
It serves as my reminder...
How many parents would
welcome that sound?
Tomorrow Lord,
I will be kinder.
Another angel earns
their wings...
and I run to my sleeping
child's bed...
I watch her then, for
quite awhile...
Bend down and kiss her head
Then I cry for the parents
whose lives have been broken,
And I look to God
wondering why?
Oh Lord, I just can't
know your ways...
No matter how I try.
And yet, I trust You to
hold her life,
And guide us through
each day
My mind says savor each
moment she's here...
But my heart whispers,
"Please let her stay".
From... pacing the
surgical waiting room...
to sitting by her hospital bed...
From... wishing for a
good night's sleep...
to learning every med...
From wondering will
she be alright?
to watching her reach
out her hands.
With every smile, my
heart just melts..
despite life's harsh demands
For all who see
that faded line...
I look to them and smile...
You see, my child is
loved so much...
I would face any trial.
That same scar I trace
with my finger...
It's the door to her
beautiful heart
I never guessed how
much I'd love her...
Just as YOU loved her
right from the start
A heart mom is
always a heart mom...
Now wise beyond her years
And for those who have
angels in heaven...
Our hearts share in
all of your tears.
Everyday I will strive
to remember...
You chose me for her
and no other
And I will embrace
that beautiful day...
When I became a "heart mother".
~Stephanie Husted
**** My baby Olivia... if/when you ever read this please know that we love you and we want you to live your life to the fullest... we want to take you to your first sleepover...help you ride a bike... hold you when that first boyfriend breaks your heart...we want to help you get ready for your prom...get you your first car...and watch you get married... i can see it now you look like an angel in your gown...although your mommy and daddy are very scared about the road to come we never ever will stop loving you you make us so happy... i knew you would give us "hell" and baby girl you are but we will always be by your side and be there for you when you need us! have faith in yourself and in god and everything will be better in the end i love you my little olive and so does so so many people don't ever forget that!****
Thursday, September 2, 2010
feeling it....
I'm noticing that i have days where i am a fucking mess ... seriously all i can think is what the fuck!? why is this happening. when i went to the pediatric cardiologist doctor the other day it really threw me for a loop i should have known that it would be the worst case scenario ... her heart is in really bad shape. and its looking like right now she will spend about the first 6 months of her life for sure in a hospital. :( and i will not be able to hold her after birth she will be rushed away to get a surgery ... breaks my heart. if you take a look at the picture the yellow marks are where the passage needs to be open and hers are not. so before she is able to have the first step of the surgery she will have to have a catheter procedure done to open up these passages... meaning mommy and daddy doesn't get to bask in the glory of the beautiful baby they made, they get to sit in a hospital room with out their sweet little girl because she will be in another room getting taken care of.
Ive been reading that this is called mourning the loss of a "perfect baby" ... but truthfully i feel like i am mourning much more than that ... i joked about it before having a downs child and honestly i would take that over this any day... why does this have to be so hard? i am so angry today this isn't fare. i feel jealous of these moms who get to take their little ones home. it makes me angry when i hear about these little things they get to do or "have to do" and just wish that was my biggest complaint. heaven forbid your baby only let you sleep 4 hours last night...or the nursery needed to be a lighter blue but your husband got the wrong color blue. i have to think of hospitals stays ... what will i need to accommodate the medical needs of my baby...where will i stay during the countless nights she will be hooked up to machines to keep her alive. i really wish more mothers would realize how special it is to be able to have a healthy happy baby..
i am trying to stay positive but if you've never been in my shoes then i don't want to hear it right now. you don't know what i am feeling .... this isn't easy and i don't feel strong i feel helpless and hurt.
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