Remembering 3/31/10

So...right now I'm EXTREMELY emotionally drained...I wasn't going to do this update til later on today, but I just can't sleep...or choose not to I guess. Dr. called me this morning (3/30/10) and said they did the ultrasound on her brain...it wasn't good news. They found a LOT of bleeding and he wanted me to come in (with my family he said) I immediately think the worst and start crying. I asked him "what does this mean?" He wouldn't tell me over the phone, he insisted that we come talk to him in person. We come in, sit down, he explains to us that she has hemorrhaging on the left and right side of her brain. The left side has a grade 2 hemorrhage and the right has a grade 4, which he says if this was the case in an adult it would definitely kill them...the only reason why she isn't dead is because she's a baby and her brain (skull) hasn't closed up yet thus relieving the pressure that the bleeding would normally cause in an adult brain. The bleeding in her brain is not really the concern though, it's what the bleeding leaves behind (scar tissue)...the bleeding will eventually work itself out, but because there was so much blood this causes fluid to fill the ventricles expanding them and damaging important functions of the brain...neurons need room in this part of the brain to fan out and "talk" to other neurons...the less connections these neurons make, the greater the possibility is for brain damage...anyways there is just SO much information we were given today...NOTHING I wanted to hear. The Dr. basically told me again 2 options: choose life and fight as hard as we can to "save" her which just means they could put in her brain what's called a "shunt" (a small hole in the brain that allows the fluid to be drained)...this doesn't mean she's "fixed" by all means...they still are not in charge of what damage has already been done...that's up to God. Doc says that after this there is almost no chance that her quality of life would be a "good one"...not exactly in these words, more tactfully put of course BUT that's basically what was meant. Quality of life meaning she may have a disability like cerebral palsy, epilepsy, she may never do things "normal" babies do such as walk, talk, crawl, eat, etc...she may be mentally retarded...there were SO many things that could happen I can't begin to list them all...I'm sorry so back to my options...number 1 was choose life and number 2 is basically take her off life support right now...well I can tell you this much, I will NOT be taking her off life support...if she was meant to die right now I believe it would happen whether she's on life support or not. She's still functioning @ this point, she's taking her feedings, pooping, I mean everything a baby should do...no she can't breathe on her own but if she was meant to die the machine just wouldn't be able to help her stay alive regardless...that's what I believe anyway...Sorry if I'm rambling I just want to make sure I get everything out :/ like I said before, there was SO much information given to us today it was overwhelming...I don't really feel like reading over what I wrote because it's just too much but I just really need to pray on this...I need some guidance as to what I should be doing...I don't know if I am/ have been making the right choices for her. I mean of course I want to believe that by giving her a chance to live that WAS the right choice but if this turns into her "quality of life" not being "good" at all then I'm just not sure...I just want her to be healthy first and foremost and then HAPPY...that's all I want...I don't understand why all this is happening. I really wish I knew. If anyone had a preemie baby with brain hemorrhaging please just tell me your story...good or bad I just need to know how everything worked out...do you feel you made the right decision?? Anyways...everyone I know I always say this but PLEASE PLEASE PLEASE pray for Leila!!!...all I want is POSITIVE prayers though. I don't want anyone thinking about anything bad happening because I believe when you think about those negative things you attract them to you...
Thank you all for listening to me rant!
~Kalialani

(part 2)
So today was REALLY not a good day for me...I'm SOOOOO SAD I'm REALLY tired of my baby's nurse telling me the same crap the Dr. told me...yes, thank you, I know my daughter might have ALL these disabilities and she might be a vegetable...well she might not! so how about you tell me that too?...I can handle the bad news...well maybe I can't, but they make it seem like I'm not fully understanding...I'm NOT STUPID, I understand the situation, I'm just under a lot of stress right now because OF COURSE I want my daughter to live...who wouldn't? and OF COURSE I don't want to hurt her! but who are we to say that she doesn't deserve to at least TRY to live and fight? We've already come this far. I can't say "pull the plug", HELL NO, I won't!
Today or maybe it was yesterday?...(all the days run together for me now :/ ) they tried to put a PICC line in :/ They STILL can't get it in (her veins are too small) they said there have been smaller babies that they could get them in (it's not about her size) it's just about the size of her veins...so they're going to wait a few days to give them a little time to grow and then they will try again...I REALLY hope they get it in soon because they said that IV for her nutrition needs to come out because it looks like an infection will start to form around her belly button where the IV is. It's turning a little red so they're keeping an eye on it and cleaning it with alcohol but it really needs to come out!
They've increased her feedings to 4mL every 2 hours. She had a little residual I think because it's gone up pretty significantly kind of fast, but they're keeping an eye on it. They have her in a more upright position so that if she spits up it won't go back into her lungs (I believe that's what they said) :/ anyways I think that was all for today...First and foremost I need to pray that her veins get bigger so they can get this PICC line in and take out the IV in her belly button because if she gets an infection she probably won't survive it
PLEASE PRAY FOR LEILA!!!
Thank you all SO much!!
~Kalialani