Cascades of Light: We are home!

Below you will find a short update that my dad sent around last evening. I’m including it particularly for the link to a slide show that gives a sense of our last day at UVA and our return home. It’s Monday morning and I’ll be heading into the office shortly. I will go with butterflies in my stomach for sure. It’s been another pretty rough night and we are eager for Nora to seem more comfortable and content. It is hard to comfort her in the ways that would have been most effective pre-surgery/UVA stay – walking her around a lot is cumbersome with the oxygen cords and nearly impossible during a feed or when being monitored. Having her sit up seems to put a lot of pressure on her belly area which unfortunately seems more sensitive than before. Her g-tube site is still leaking which is just disconcerting, though not increasing in volume so likely not too problematic at this stage. Overnight she needed a higher flow of oxygen which they said might happen, but is also discouraging for Jason and I…

So we carry on but with heavy eyelids and somewhat heavy hearts as well. We may try to lower the volume of her feeds just slightly to try to give her gut a bit of a break. Hopefully Daddy reading stories to her and singing and Kali helping to entertain will get them through the day. Janelle

Sent: Sunday, May 18, 2008 8:56 PM

Yes, we are home. A part of us remains in Virginia. We wish we could have remained to help in Nora's care.

She is fed by pump infusion at night. During the day she gets gravity bolus feedings plus nurses Janelle. The latter is clearly her favorite and is comforting to her in the midst of her recent trials and tribulations. She is on oxygen all the time as treatment for the pulmonary hypertension. Janelle and Jason are monitoring her oxygen saturation and adjusting the oxygen flow accordingly. I wish the oxygen monitor played classical music rather than a fog horn type sound.

There is much I could say but I enclose some pictures to say most of it. Obviously I continue to enjoy the birds as my distraction. I especially enjoyed good views of Canada and Mourning Warblers. I was tracking down the Mourning Warbler when I encountered the two bear cubs up two trees. I did find the warbler. I had a shocking experience while crossing the electric fence when I decided I better get out of there before facing their mother.

Keep Janelle in your prayers as she returns to work tomorrow. Keep Jason in your prayers as he cares for Nora and Kali. He is doing an amazing job with all the technology that is new to them. Pray for Kali as she tries to be a big sister but can't fully comprehend all that is going on. Pray for Nora that her smiles and coos will return. Apparently the smiles did a bit this afternoon when her daddy was kissing her.