july 27- our little vampire

apparently wren has a magical trick where her blood disappears. i know, i know, it's still early for magic tricks. but this girl is just ahead of the game.
what???!!! no food?
so, here's the story. today she got blood transfusion number 5. (i think. i'll have to double check.) her crit was at 24 this morning. (down from 26 last monday.) the red blood cells aren't all getting caught in her liver. (she'd be jaundiced, there's no way her liver could tolerate that much coming through.) they aren't being used for infection, or sickness anywhere. (she has no symptoms.) she doesn't have any internal bleeding. (no IVH, or gut bleeds.) in short, the doctors don't know where it goes... but it sure does go! they said the effects of the transfusion, needing less oxygen to get her sats, outweigh the risks, possibly fooling her body into not making enough itself, and extra work that she would have if they didn't. they want her calories going toward breathing and lung development, not red blood cell production. (of course, having red blood cells does make oxygenation easier!) it seems like this is SO many...
how many transfusions did your preemie need?

you'll notice in the pictures how much more pink she looks now. today she recieved 1/2 of the total transfusion. they give it in 2 parts with a 12 hour break in between. the really super bad part is that they put her on trophic feeds again. :( and she's not sick! so she feels hungry and everything. she was crying SO much while we were there. it broke my heart! she's down from 30ml to 2ml! a HUGE jump. she's getting her fluids though. a mixture of minerals and fats etc. they're hoping she won't lose weight. she can't start going back up on her feeds until wednesday. they're hoping to get her back to 30ml fairly quickly. it's a good thing... she just roots around and keeps her mouth open all the time!

the trophic feeding is because some research shows that there is a risk of developing NEC with transfusions if they remain on full feeds. this is not what all neonatologists think... it is the most conservative course of action. but, that's ok. as hard as it is for her, i'd rather she didn't have a risk of NEC.

good news: she's now in the isolette with the top up... possibly moving to an open crib soon! :) she's just a temp rockstar. everyone seems really suprised... but she keeps her temp up just fine in a short sleeve onesy and a blanket. (or just a long sleeve, pants outfit.) i'm super excited. i know i've talked before about having a "normal baby". it really makes me feel good to have a baby that is dressed, wrapped up, and in a bassinet. it just seems so much more normal. (and this preemie mommy has been longing for a little bit of normal.)

i took a new picture up there today. i found that photobucket has an editing option under edit, effects, inkstamp, that will change the picture to just black and white. the current trend in infant development is to show babies black and white. (the days of your pastel mobile are gone.) i've done some research, and it seems that this is not totally necessary... but babies do see extreme contrast (ie.black on white) much more easily than other colors or more subtle shades.

this is the picture that we put in her isolette
tomorrow is our family meeting. that should be interesting... my dearest will be gone... he leaves for 2 weeks tomorrow. this meeting is also when we're (i'm) going to have to tell them about our "alternative scheduling" for vaccines. (she's almost 2 months already!) i'm not sure exactly when or what we're going to give her yet. we haven't totally decided. we're definitely not giving her anything for quite some time though. (she weighs 3lbs for goodness sakes!)
daddy and wren- the last picture of them for 2 weeks!
she'll be talking by the time he comes back.

1 comment:

Trish said...

I *think* Robbie got 5 total. He got 3 or 4, then his retic count was high enough that they weren't going to transfuse him again, but then he had to have surgery and his crit was too low for surgery, so he got 2 more (got one, still too low, got another)

Then back in February when he was admitted to the hospital for FTT, they did a workup and he was low again and had to get 2 more. (STUNNING ME) I asked why, wondering if it was malnutrition (he'd not been eating for a good while) and they said no.. "Preemies just do that sometimes."

Weird little preemies.