Sunday, June 1, 2008

incarcerated

So the doctor came by and said Abacus will probably stay in until she's full term, which is June 26th. Personally I don't think he made an individual assessment but rather based it on her condition. So now we live here. It's good to be near her but it's not the greatest place to be living, and we feel pretty isolated and confined. Feeds are every 4 hours and each takes about an hour, which gives us 3 hours in between to try and leave do stuff and get back. Parking is no longer free because we stay here, even though we have to be here, they don't have a budget which covers not having their own car park charge us for parking there, and if we were to walk, with the small window of time we have, it would just not be possible to do what we need to.

And I know this is pretty complainy, but we are still very impressed with the free health care we receive and that they're not just trying to rush her out because of mounting costs, and I don't want her to come home until she's ready. I guess we have to remain skeptical of an early release for our own sanity.

The over all standard of care is really good, there are a couple of nurses who have not been that great, but that's personality more than the system - a lot of the nurses have been really good professionally and personally. Some senior nurses are senior citizens and we have had one incident with one I'm not sure I can go into here.

We try to share feeding. Especially at night time, with one taking the 12am feed and the other the 4am. She has an uncanny knack to drink exactly 35mls from the 55mls in the bottle every time - no more no less - she has the other 20mls down her NG tube. She's really good at feeding, she just gets tired a bit early. We need to get her big so that she can hopefully have the energy to feed herself the full amount. Hers and our release from here is contingent on her putting on weight and feeding.

On saturday morning we had a CPR class which is required before we go home. A lady named Verree took the class who is a big fan of Abacus, as she has a down syndrome (trisomy 21 is it's proper name) grandson and godson. She has also become the specialist for the condition on the ward. She gave a very animated demonstration with a bit of acting to enhance the "realism", except when she smashed the dummies head on the cot. She also showed us how to properly make the cot so there were no suffocation or joking hazards. She made the point of how weird it is that when you adopt an animal from the SPCA someone comes out and checks your property and makes sure you are responsible enough to own an animal, but in most cases parents are sent home from the hospital with a baby human and little idea of what to do in certain situations. She spent an hour after the class talking with us about Abacus, we really like her.

So back to my complaining - we stay in a little room and there's one shower down the hall for at least 6 people. The kitchenette has only a microwave, which doesn't really promote the kind of healthy eating expected of breast feeding mothers - or any healthy person really, which is weird given we're in a hospital. There's also no laundry facilities, and given that some families live here months you would think a washing machine and dryer wouldn't be too much to ask - even pay ones. An oven or two wouldn't go amiss either. That may seem like an expense, but considering we watched them put in four palm trees outside the new hospital block - which value about $10,000 each, I think the hospital could reroute a bit of their budget. We also got a $45 parking ticket after our paid parking ticket expired - and yes some of the blame lies with us, because we didn't go out at 6am when it expired to put a new one on - but we were told to live here and I'm baffled by the difference they make between parents who live at home and those who live here.

Anyway, only 3 weeks to go!

Abacus though is doing amazingly well. We are so grateful for the fact that at this point they have found no organ problems typical with trisomy 21. Her muscle tone and control also seems very good - her constant leg movements (even while sleeping) make everyone suggest she might be a dancer one day - our favourite is when she so effortlessly does the splits. And the fact that she feeds so well - so often nurses and doctors will say - well it might take a bit of time with trisomy cases, but then they're amazed when they see her chug it.

Sorry the updates are getting a bit irregular but internet access isn't that easy around here. Well, off to microwave some noodles.

2 comments:

j. atmos phrericks said...

it sounds like she does awesomes. you could get those "i am taking care of myself" tv dinner things...mmm. sorry.



you should get a parent delivery food system going. where they just pop in and out with a tray of deliciousness.



many peaces.

dittysketch said...

i'm thinking of doing raids on other wards for dinner trays. Maybe i'll steal the whole wagon and liberate all the other parents too.