Friday, June 20, 2008

And the battle continues..

Just when we think Mila is making great strides ( eating a chicken nugget, a few bites of hot dog, a piece of cheese, most of her formula ), she plummets down to baseline ( 8 oz / day +/- ).

Alex called and confirmed our appt for July 2nd. We will be signing the consent for the PEG placement. We cannot continue to abuse her this way, re-inserting the tube every few days. Its just not possible. I say " abuse " but I know we are helping her. Its very emotional though.

Re-insertion workds like this.

Gather supplies, hopefully out of sight.
Heart cries a little when small one sees the tube and begins to cry.
Fill a bottle with 2 inches of cold water.
Dunk the first 12 cms of tube in cold water.
Attach syringe ( 10 ml empty ) to one port.
Cut 1 tegaderm in 2, cut 1 duoderm to 1" by 3".

Lay down a blanket, drag small one from under the table while she cries " no! no! "
Swaddle her on blanket with arms trapped.
Force head back, apply Cavilon & duoderm
Put NG in
Cover with tape.
Check placement.

Cry as child refuses to be comforted by you since you just tortured her.

I don't need sympathetic emails over this. Honestly, its a part of our life. But thats what it is - torturing her for her own good. And now that she's stopped eating at all orally ( its 12:09 and she's had... 1 oz ), we'll restart dayfeeds during nap & lunch/dinner where possible.

More later.


Big Fishy said...

I feel awfull for Mila and you and Alex.
I wish there was anything I could do to help.

Jessica said...

HUGE HUGS. I hated inserting the NG as well. Jedd was much smaller so he forgot faster. I hope the consult goes well. Jessica

Patyrish said...


I know that sucks.

Isnt it amazing the things that you become accustomed to when you have no other choice.