We try to be patient. We really do. But I can't help but occasionally feel like a petulant child in the back seat, constantly whining, "are we there, yet?" Norah is fourteen months old. All but two weeks of those fourteen months have been in the hospital, the majority of it being in the Pediatric ICU at our local children's hospital. It's enough to push us over the edge, but we lean on one another for comfort, support, and encouragement.
This journey has brought us to places and introduced us to people I never would have imagined, but I would trade it all for "normalcy". Yet I would never ever trade that normalcy for life without our perfect girl. I suppose I just go through cycles. Sometimes I am so optimistic and energetic about how things are going. And other times I feel really crappy about the whole situation.
Yesterday we checked off a few more things on South Davis' discharge preparation list. I changed her trach, did trach cares, and not only did I do g-tube cares, but showed the nurse our new method for doing them. All of these things have become second nature now. We're beyond ready to take her home. But Norah isn't ready. Rather, I should say her equipment isn't ready. We are still using the ICU-only vent, with the home vent just a couple hours each day. The only thing standing in our way is technology, or the FDA's approval to take home what works for her. I am often asked if we'll take Norah home when she is off of the ICU-only vent. I look at them like they're crazy. I can't help it. No one will be able to stop me from taking her home once she's able to tolerate the home ventilator on a full time basis. It will be a new and difficult phase of life, but she will be at home where she belongs.
On Monday, one of Norah's RTs said something that really irritated me. I should have said something, but for some reason I didn't. Maybe I was too exhausted after a long day. On our way back to South Davis, I was pushing Norah's stroller in to the building, when her RT said "Do you got her, mom?" When I answered, "always", she said "Well, only until I decide to take her from you."
Seriously? Who says that kind of thing?! Maybe that's what has me feeling down right now. I love that we share Norah's love with everyone, but she is still our baby girl. She came from my belly. I carried her for exactly fourty weeks and worked like crazy for that successful VBAC. We have never missed a day with her in these long 14 months. We have been through multiple surgeries, 9 frightening minutes, acute illnesses, countless procedures, financial woes, lifestyle changes, buckets of tears, and some amazing triumphs. She has her daddy's double jointed thumbs, and mommy's dark brown eyes. We're the only people that can truly give her cuddly comfort when she's upset. We don't get to give her baths every day. We don't get to dress her every day. We don't get to tuck her into bed with a song or a story. But Norah is still our girl. ...Are we there yet?