Thursday, December 14, 2006

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.


Martha Brogan said...

A wonderful picture of your 2 girls in bed, with no wires. I've waited 8 months to see those smiles on their faces!

kate said...

Here's my question of the day - Am I going to get weepy at every picture of Ellie sitting on the couch, or is it just this one?

Hip Hip Hooray. Wait until that girl gets a load of Gus.

Unknown said...

Super grinning baby. She looks lovely, so very at home at home!

Anonymous said...

So joyful to see you all settling into your new home.

G. April said...

Well it is obvious to me that Ellie is emotionally devastated from being away from Children’s. Ear to ear grins in every picture is the international signal for immeasurable sorrow.

And Ellie is reading now… spending that much time around that many Ph.D.s, MDs and RNs has really given here a great head-start.

Barbara Krause said...

Now this kind of "normal" we can love! Beautiful!!!