blood clot in the RA

the day before yesterday had started off so well we tried to breast feed olivia and she was eager to try and she did well... i went off to my appointment had a good session and left happy and feeling good. i returned back to the hospital to spend the rest of the day with olivia and snuggle the baby.
when i arrived the doctors talked to me about some concerning news... olivia has a large blood clot in the RA of her heart. they called it a cath cast caused by the ra line that was placed. it is a very large one i must say. i saw the echo and all i can say is "this sucks"


i am so scared right now... this can possibly end my baby's life... all i can do is pray and i swear it isnt helping me right now.

i wish i can say that this is all going to work out but i dont know whats going to happen.... but i hope baby girl fights hard!

i have a one month old

Olivia is a month old. her one month birthday was yesterday.
i sat and i sang happy birthday while crying because i am so happy for having her in my life.

i am so proud of her that she has fought this much and is still continuing to thrive.
i see her beautiful little face and i am humbled.

i love her more than anything and i pray everyday for god to continue to bless us.

happy 1 month my sweet sweet olive.

what hurts the most...

i hear these songs and read the storys and it brings me down...my heart is heavy the last few days my patients is extremely thin... i have no tolerance for people around me. maybe the lack of sleep..the sounds of beeping ingraved so far into my brain not even help from a pill bottle can silence it. thoughts of whats to come haunts me but living in the  now isnt any easier with the latest financial struggle chris and i have found ourselves facing on top of everything is really getting to me. dont know what to do ... it makes me wonder if i will ever be able to work in the real word. will i have to always depend that some one else will provide. so many thoughts plague my mind and i hate it i hate the frustration im tortured by...i hate the rage that has become a normal part of my life...but the biggest struggle i face is looking at my daughter and wondering how will we get through this. how will i be what she needs if i cant even help myself in all of this . my brain has declared war on itself.

when it hits you

i read profiles and blogs and status updates about other babies with HLHS ...i cry. then it hits me at any moment i could lose Olivia. one day i can be holding her and the next she is gone. i realize i shouldnt think this way but there is no way not to think this way. i see it everyday.
i am torn its a double edged sword ...the lovely ladies who comfort me on restless nights seem to be a root of these panic attacks also.
im terrified of what the future holds. im scared of what god has planned... but i am anxious for what it is also.
being torn this way is painful and exhausting.

bath and clothes

I got to "bath"  Olivia tonight. it was terrifying. she is so tiny and there where rules as far as what you can and cant wash but it was wonderful. i adore her.
Ive given up on hopes of getting upstairs and out the door for now. I just want what is best for olivia and if that means she stays in the icu for a few more days then i am ok with it.
She is so beautiful... i find myself wondering how did some one so beautiful and amazing come out of this horrible mess that i call life. she has an attitude, she is well behaved most of the time, she is cuddly... she is just amazing alright.

We get to dress her now too. less and less restrictions on clothing too. she swims in most newborn stuff but its ok. she gets a lot of attention from the passing nurses they think she is just the cutest little baby in there ... but i keep her pretty decked out. i mean why not i dont want to miss out on any of these things. i am cherishing every moment and thing i get to do with her!

well i am sorry this post is short ... but as far as everything else she has finished her antibiotics and is feeding again. we are hoping she tolerates it well. so far so good. they are going slower now and are keeping a closer eye on her belly these days because of the NEC but she is doing great ... but please continue to pray for her ... so we can all go home and enjoy our new house as a family.

my BADASS

 Olivia has proven that she is in FACT a bad ass! 

Last night when i went in to visit and snuggle our nurse Jessica informed me that little miss ripped out her last chest tube. she didn't cry nor fuss just took it out! they did an xray and made sure everything was good and it was so there is not much to say about that. today they are trying to figure out what they are going to do with the pic line she has in her left leg its been leaking and getting yucky so they may take it out and put a new one this means pain meds and what not but it also means a safer line. they are feeding her through this line too.

but all in all she has been having some good days and its nice to hold her with out the chest tubes! i also can change her and thats a big deal for me she also gets to wear clothes! tooo cute. so here are some pics of my cutie patootie!

getting to be hands on with baby girl and update

 Well the treatment plan for Olivia is no food and antibiotics for 10 days. they are treating her for Necrotizing Enterocolitis (NEC) its where the intestine starts to die they caught it very early and this is a GREAT thing. its a set back for us but it is better than her getting sicker. she looks great and everything else has been really good.

We also where able to change diapers today put a shirt on her. i gave her a massage and wiped her down. i was able to hold her and give her kisses and so did her daddy. today was a boost i needed!

feeling angry and upset?

The past two days Ive done my share of crying and getting upset. i know that i shouldn't take things personally but i do.

Today i was talking to the nurse and i had asked "when they take out the RA lone will i be able to hold her?"
she answered :" yes but you have to be VERY CAREFUL" seriously lady .... like i am going to throw her around or something... i am not an idiot . i get it she has to tell me but really its my baby.
i hate that i cant hold her yet. that fucking line has no use they said that they would remove it as soon as she was off all of her drips and that was two days ago. i get that there are other babies but its like sense we moved to the POD that they just leave her there all day and do nothing.

I'm also having issues with sharing. i haven't even got to hold her and have a chance to get to know her a little bit and i have to share her with everyone and i appreciate  the advice from people but i hate when people are telling me how i have to take care of her or that i NEED to do something or not do something... i haven't even got a chance to try it out to be a mom yet. i don't want anyone to tell me how to do something i will ask if i need help.

I have a flood of emotions on top of a fucking headache that wont go away. a belly ache that makes me want to rip out my guy every time i eat... and i just want to go home. i want to take my baby home and i want to do the mom thing i want to change a mess of dirty diapers... i want to feel so sleep deprived id give anything for my bed but instead go stand by her bed. i want to be able to properly breast feed my baby.

I hate not being able to cook in my own kitchen and feeling like i am home... i've been drifting around for to long i just want to be settled ... but in the back of my head i know that this wont be for a while... i hate knowing that poor Olivia will have to come back for another surgery.

Olivia is doing great for the most part her swallowing and sucking isn't the greatest but they are going to work on it. today she got to try a bottle it didn't go great but she did try and got 2mls down. they said early tomorrow morning they will be taking the RA line out so we will see how that goes. hopefully they do. 3 chest tubes are still in but hopefully this weekend we get at least one out. they are also talking about moving us to the third floor ... thats like having one foot out the door... i just hope that there are no set backs and that sweet Olivia does get the eating thing down.

moving on up

as of today we are in the pod and that means olivia is no longer one to one she now is 1 to 2 because she is doing so well her feeds have started today too and she should be at full feeds by 1230am yay!!! so as soon as they dont need to give her the 2 meds through a line they can take out the RA line and then we can hold her!

i cant wait.

she is also vent free and oxygen free! almost tube free!!! im a happy mommy!

finally got some boobie milk!

my paci is GOOD!

so cute!

i can hold my own momma!

mommy adores you <3

pictures and video of today

So today Olivia CODED... it was so fucking scary ... Chris and i called early to the hospital to see if they where going to close and that's when the day turned bad. we rushed down to the hospital because they said that her stats where all over the place and her BP and heart rate where way off her bp was 36/30 and heart heart rate was 190's ... 
when we got there they said that she was stabling out and that we should go get some food because they where going to close her up today and it would take a couple hours... so Chris and i went to the pumping room before going to get breakfast and when i was almost done the alarm sounded and there was a code blue on the floor! i listened close and i couldn't tell if it was her room i asked Chris and he didn't know either so we hurried and put things in our bag and ran out of the room and that's when we saw all of the staff running into her room they had to do chest compressions and then Olivia came back ... she stabled out and they decided to close her up. and the day has been very peaceful! she got a lovey from her nurse who also decked her out with a Bennie and some socks and here is a video for you too 

she is doing so much better now so hopefully that continues! we want the breathing tube out next! come on baby girl you can do it!!!!

scared

everyday i wonder will we have a bad day... everything is going so smooth and we have had a little tiny i mean SMALL hiccups with blood pressures but other than that Olivia continues to tolerate her treatment well and has been very stable. everyday i ask god will today be the day you decide to take her back?
in the past few days a lot of things that have happened has taken an emotional toll on me. The loss of Parker, a close friend of mine her son who was born days before Olivia has really got to me. And heather has been so brave and continues each day ... she has been one of the only people that i truly feel connects with me and understands what i am talking about. so of course this would hit me hard. i keep thinking is this going to happen to our family too? and then i see all of these others who lived 1,2,4,22 years and their lives where cut WAY to short and it just has me a mess the past few days.

i also have another issue i am dealing with inside of my brain.... i feel like the pregnancy was a dream like it did not take place... a part of me feels like i didnt have Olivia. i go to her bed and my heart melts i stand next to her and i feel a connection but as soon as i am out of the hospital it all doesnt feel real. when she cries my heart breaks into a million pieces ... i hate not being able to do what i am suppose to do. i need to comfort her i need to hold her and help her feel safe and calm but i cant and this has been so hard but like i said when i am away it all feels so unreal.

i took this video today of olivia. she is moving around and i want to pick her up and hold her but i know i cant and i have to settle with a caress of her arm and a whisper promising her that i love her and we will be there in the morning. i really dont think any mother should have to go through this.

i think today has been just a rough day for me... and i cant get my brain to shut down just a little bit . but as for olivia she is still very stable and hopefully tomorrow she will have her chest closed up.