Update

So yesterday was one of those sideways days in the hospital... No forward progress, no sliding backward. As Brent posted during rounds it was decided that a PIC line would be put in to allow them to safely give her IV nutrition. IV nutrition can be given via a regular IV but as I learned yesterday gulcose can blow out an IV very quickly so they prefer to have a more robust line in place. They took her down to radiology and were unable to place the desired line in either her left or right arm. Apparently all of the veins in her left arm are blown out from the 9 months of being hosiptalized last year and the one vein they could go into in her right arm was somehow occluded by her trach. Alas, at about 2pm they came back unsuccessful and the plan then was to give her IV nutrition through the line they had and try again to give her pedialyte in the hopes that her bowels 'woke up' during the day. She came back from radiology on a whole cocktail of meds and I have never seen her so drugged in my life. It was kind of funny and everyone in the CICU was laughing at her drunken salor interpretation. She quickly took a nap but after an hour woke up crying in pain rubbing her belly. After changing her diaper and trying to console her it was apparent that the feeding was the problem. We turned it off, gave her some pain medicine and the team decided to call it a night on food.

We called in this morning and the night nurse reported that she had not eaten anything all night and had had an ENORMOUS blow out - sheet changing, bath requiring blowout in the early hours of morning. Progress! What this tells us (I THINK) is that her bowels are working, maybe not up to full speed, but we are not dealing with strictures/free air or any of the nasty stuff we delt with in the NICU. So for now we hope for more of the same and that we can advance feeds slowly.

It's kinda funny because the CICU doctors keep looking at me kind of sadly that we are going so slowly at advancing 15cc's ever 2 hours. I didn't have the heart to tell them that for about a month in April 08 we agonized at increasing feeds 1cc every 8-12 hours.
We are hanging in there. We love the people at Children's but hate being there. Social visits are fine with us!
Take care and we will post any progress as it comes.

Kirsten, Brent and Madeleine