bad news

the numbers from the cath today was not good.

olivia had 2 superior viena cavas (sp?) they closed off one of them.

possibly cant do the glen ...

dont know how they will fix it...

im really sad...

and so tired

cath today

they took her back at 3:45pm.
so far no news.

no news is good news.
hoping things start to turn around.
i have faith in my little girl.
she is a trooper.
she is a fighter.
care conference went well.

getting ready for the cath... little lady all laid out.

enough is enough... how will i know?

i've been asking myself this question for months now. Chris and i have been faced with very challenging decisions these past 3 months and tomorrow starts another set of bumps to get over. Olivia will be going in to the cath lab around 2pm. there are risks to this and we understand them but they bring up the questions when is enough ...enough?
we want to advocate for Olivia and we want to do as much as possible to give her a great quality at life ...so when these procedures come about these questions and scenarios are present in my mind.... i just want to know as a mom will i know when to say no...to stop... when do you decide to stop... will we have them ever stop...

I want Olivia to grow up... i hate CHDS. i just dont understand why babies have to be born so fucking sick...
tonight Olivia woke up more then they wanted and we had to stand there and try to keep her as calm as possible. she was extremely terrified ... you could see how stressed out she was and on top of her stats dropping and her heart rate going up to high. i did however manage to keep most of her focus on me and talking to her. its very painful to see her in so much pain and to see her struggle so much.

tomorrow we are having a care conference with the staff and to talk to them about our wishes if anything was to happen... and what we need as far as primary care nurses go.

Olivia is still under the goal for weight and is still younger than they wanted for her glen and repair but because of  her current condition they have to go fourth with getting her into her surgery and trying to fix what is going on with her broken heart.

once again Chris and i have to place our sweet baby girls life in the hands of the doctors ....and pray that god continues to bless us with her ...im so scared. i want to hold her so bad.

show stopper

well last night Olivia proved to us how well she can grab the attention of the room. when they where cleaning out her lungs she decided to pull out her breathing tube. this in turn caused them to have to rapidly paralyze her and sedate her to place a new breathing tube in. she received 5 minutes of chest compressions . there was yet again a code blue called on that little diva. she sure does have plans of her own.
last night dr reddy came to tell us that he will be doing her glen/repair this Friday and the cath will take place either Tuesday or wen.
Chris and i are terrified. we are handing her off again to try to fix her broken heart.

i just really hope they can do what they need to do and bring her back to me safely. i need to see that smiling face of hers.

this week is going to be long.

intubation...again makes 3 times this admission

shes just to sick...
she needs rest...
she smiled so bright but now she just sleeps...
her body cant take the stress...
her little hands are so cold...
her eyes don't look around anymore...

 Olivia's regurgitation in her tricuspid valve went from mild to severe. she is considered to be in heart failure. from yesterday to today her chest xray went from looking beautiful to horrible. she was working extra hard and they had to give her body rest. she will be sedated until they feel she can handle breathing on her own again. Dr Reddy and the other cardio dr's are going to reevaluate her surgery dates

i don't want this to be over. please god give me more time with that sweet baby girl. give her the strength to make it through all of this. she needs you. i need you. please hear my prayers...please hear the hundreds or prayers going out to her. give her a chance to grow up and enjoy life. i want to worry about her falling off her bike...dealing with boys...and gossip in her school.... i want to see her graduate... get married. i want to see her grow up and be happy.

the after shock

The after shock of it all has set in and i no longer can sit still.  i hate this olivia looks horrible i put a smile on my face and i pretend that i am ok and hanging in there but seriously right now i am losing it.
these high spikes of good and HORRIBLE dips of LOW LOWS are killing me.

Olivia is hanging in there and the sad thing is she has no understanding of the world around her and she is fighting so hard to live and there is no way to take the pain of all the tests and pokes i hate it.

It makes me sick to my belly knowing all the pain she has to go though and there are no promises that she will even make it to a year old ... and with that i am angry and pissed off!

I shouldnt even be complaining that about this because things can get worst.
last night will be the 4th time she has coded in the 2 months and 2weeks she has been alive.

all i ask is that you continue to give olivia strength lord. please?

the gtube

getting anxious is always my response to things like this. knowing that this could possibly kill my baby scares the shit out of me but look at what could happen if i didnt opt for it.... asperation is painful as an adult and we can clear the crap out of our lungs but she cant. this time it almost killed her.

surgery tomorrow

we are not scared we are just chillin...... maybe.


please pray everything goes smoothly and little miss can bounce back with the quickness!