Home

Home is sweet.

We came home on Tuesday evening, and it has been pretty awesome. Kris had the house all set up and ready for us which relieved so much stress. It makes such a difference to come home to a lived house rather than an empty one. Eleanor is visibly happy with the situation. She's so great.

But what would a trip home be without a few unscheduled visits to the hospital?!?

Last trip home was fraught with hiccups (broken feeding pumps, broken feeding pump bags) and so far we have been lucky. Four full days without an incident! Woo hoo! Until today, when she sneezed (I kid you not) out her NG tube. Oh, Eleanor. You silly little bear. We phoned the pediatrician-on-call before heading into emerg, and thank God we did. She arranged for us to go up to the pediatric ward and have the nurses there help us, rather than sit in the emergency waiting room all evening. The nurses were sweet, but were not very familiar with the procedure on an infant, and it was all a bit tense. We didn't bring any of the band aids we normally use to stick the tube to her cheek, and the ones the nurses provided didn't work very well, so they put layer after layer of tegaderm (clear tape) in an effort to get this stupid thing to stay put. She looks pretty silly, but it's in the right place and staying put and that is all that matters.

One thing that is a little unsettling about our pretty awesome home visit is Eleanor's inability to go to sleep in the evenings. The first couple of nights were okay; she took a little while to settle and needed lots of time to hug my arm, but would eventually go to sleep. The last two nights, however, have been maddening. She shows all the sleepy signs (yawning, eye-rubbing, general fussiness) but the second she gets placed in her crib, she is wide awake. I bent over her and allowed her to hold my arm for 45 minutes and I don't even think she blinked once. It makes me incredibly frustrated, so I passed over bed duty to Kris. He's very patient and sits in her room and stares at her til she sleeps. It takes awhile, but at least he doesn't get as mad as I do. Patience is a virtue I do not have. She just fell asleep, and he came in here to express his concern with her. We both agreed that it is probably the high dose of steroid that is causing her to fight sleep. The doctors keep her on the stress dose as it would be harder on her system to wean her down and up again for each round of chemo. Kris looked so small and frail in the doorway. My heart broke (and is breaking again as I type this) when he said, with sloping shoulders and heavy heart, "I feel so bad for her". Even when she isn't getting chemo she still has side-effects from other meds to contend with, and still has to get tubes shoved down her nose and it can't feel very good. She is super-human in so many ways, but she is still only 10 months old. I feel bad for her, too.

But that said, our visit has been great. She is active and happy and never cries during the day and naps well and is in loooooooooove with her dog. They have become fast friends when Atia realized that Eleanor was like a human lollipop with changing flavours. Mmmm coconut yogurt in the morning and sweet potato and chicken in the evening! Who could ask for anything more?

Early mornings with my girls