Settling in to normal

We have been home for three days now and are getting into the routine of being at home. In some ways it is similar to the routine of the hospital with pumps, and IV lines and feedings, but in every other way it is entirely different.

First off, we are home.

Our couch.


















Our floor.


















Our bed.























Very simply life at home is great.

And terrifying. We no longer have the great nurses of 8 West a few steps away whenever we push the little red button, or the entire floor in our room if we push the BIG RED EMERGENCY BUTTON that thankfully we never had to push but it was nice to know it was there.

We now do everything for Ellie inlcuding setting up her IV's, feeding her, weighing what goes in or out. IT took some getting used to and adjustmen to the routine but it is getting easier everytime we do it.

It is also exhausting. Both physically becaue it starts early and ends late, and mentally because we both know that the safety net is gone and that we are out here alone until we can get help on the phone.

We have a great nurse who spends the night with us and that makes things easier and lets us sleep during the scary overnight times when alarms are most troubling.

Gus the wonderdog returns this weekend. That will up the ante, but we miss him and it will be great to have our family together finally.

Ellie went for her first outpatient 'clinic' today and everything is going well. the doctors are pleased, she keeps growing and we have taken two hours off of her PN each day. she is down to 14 hours a day now. Lots of free time to play without the pumps.