unhooked

Ryan is off his TPN for 4 hours each day.  This adds a bit more to our chaos as I have to now  disconnect him from the line then flush his Broviac line with saline and heparin at 5pm, then check his blood sugars twice while off the TPN before reconnecting him to the new TPN bag we make at 9PM.  But it's cool b/c he can also be disconnected from his continuous feeds at 7pm---SOOOOO, from 7-8pm, he is totally unhooked.   First time this happened was Sunday evening and he was pretty angry about it at first...

And I took him outside to watch daddy play basketball, but he wanted to come back inside.  Then daddy hung out with him which made him so happy...

He got a tour of the backyard (beyond just the deck) and on his third day cycling off TPN, we went on a family walk...Nora in the Bjorn with John, Ryan in the sling with Jess and Caitlin pushing her baby Stella in the play stroller.  It was all very....normal.  then we played "I spy" on the deck with Caitlin, which was all kinds of hilarious--then it was 8pm and time to hook Ryan back up to his feeding tube (BOOO!).  but it is nice to have him off the TPN for a short while each evening.  His blood sugars are holding really steady while he's off he TPN and we're hoping he can be off for longer periods of time but I'm not sure how fast these things happen or how he'll tolerate things.  He's up to 19mL/hr on his continuous feeds (was at 13 mL/hr at discharge) which is about 60% of his total calories.  Bilirubin is <1

Daddy multitasking....(rocking one in the bouncy with the free foot is how we're getting by these days)