last post amended

You would think people might think a parent might feel more vulnerable to random strangers when they are holding a tiny baby who looks little more than a day old. Instead a baby becomes an open invitaton for anyone to talk to you about the most intimate of personal details. Asking if it was a natural birth etc, what do they want to hear ? What do they get out of hearing that information ? I'm almost creeped out enough by complete strangers who smile at us. What is it about other peoples babies, that makes people smile?

Another thing is, if you are walking around with a baby and you're a guy and you're walking with a male friend, people just assume you're gay dads, not that i'm offended by that but I am by the looks some people give you. They've created an idea themselves that they can't handle or that makes them uncomfortable, even though it is in no way represented by the reality of what they're actually seeing. Dick's.

not THE abacus?!

So today we returned to the hospital for a hearing check. Apparently hearing problems can be common with trisomy 21. So we go with the doctor and this photographer and this other lady and apparently they're doing a photo shoot to promote hearing checks and the need a photo with a baby having it done. And so Danielle said how Abacus is Trisomy 21, and the lady asks, what's her name?

Abacus.

Abacus? I know Abacus I read her blog!

Apparently she works with a girl I used to go to design school with. And so she was wrapped to finally meet her. She's so famous now. So they took a bunch of photos of Abacus with her wires all over her head with us watching lovingly over her - they said it was rare to get both mother and father so that should hopefully help her chances of scoring the modeling deal. hehe. Unfortunately she was hiding her face through the shoot, but fortunately the back of her head is cute too.

After they'd taken a million photos of the staged hearing test, we went through for the real one, where they put something in her ear that was attached to the computer- and i did mean to research this before i wrote the blog but i didn't have time - so they put this thing in her ear and somehow measure her hearing ability. Unfortunately the test was inconclusive, so we have to come back in a week, they say 15-20% of the tests are inconclusive and only1% of them might actually have impaired hearing, so we'll see.

The doctor was really nice and really good with kids. He made funny noises to both test her hearing and calm her down, Danielle wondered if that was part of their training. And the guys from learning media doing the brochure were really nice too, and I'm sorry I didn't get your names if you're reading this.

And then once more after our free hospital care we paid for our parking in the infamous carpark. But next time we have a free permit. Yay!

40 weeks

The bonus round is over we were told today, as Abacus celebrated her full term day, alas she is no longer fetus, they grow up so fast don't they. She spent a day out and about having breakfast with friends and going to the library and to the office, then, in honour of the end of her third trimester we wanted to have her weighed.

So we drove out to Plunket and they were only too happy to weigh her. Except Abacus had exploded in her pants so badly we had to borrow a bunch clothes to get her home in after emptying almost a whole tube of baby wipes.

So her official full term weight is 2.44Kg, a little over 5 pounds.

So now she's officially a baby. And exhausted after her big day of walking and driving around the city.

and as for abacus

ha. that last post had nothing to do with abacus, oh except that she was better known to the person who helped me than i was. She's miss popularity.

She had a bit of a crazy night on saturday and kept us awake with her crying, which seemed to be related to nothing but wanting to be cuddled - can fetuses be clingy ? last night she made up for it by giving us 5 straight hours sleep. She seems quite contented a lot of the time, just looking around and making happy sounds. She's getting so baby sized, I think i'm already missing her smallness, and she's only just made it to small newborn size.

It's strange she's still supposed to be a fetus but we know her so well already and she seems to have so much personality, what do they do in their those last 2 months ?

stop the rollercoaster! - oh it's stopped

whoa. how much more intense can it get ? this morning i went to check my exam time online, for my exam tomorrow, and found it was already underway - i'd got the day wrong!!! so following danielles advice I phoned Celia, the woman who had helped with our enquiries about agrotats a few weeks ago, and who was also in charge of late exams and stuff AND who was a big fan of abacus. She said come in now and do it.
And so mentally unprepared i went in and did it, and maybe it helped that i hadn't had the last few hours to stress about it, or maybe the peripheral stress overrode my exam nerves, but i felt somewhat calm about the exam - just a little bewildered at how crazy everything has been lately.

incidentally when we did go to see about having a comment put on our grades that our mark was impaired due to our situation - they said we shouldn't and it was actually seen as a weak point to have a comment on your academic record - even though they offer it - why would they? they said it's best just to explain the grades when it comes time to apply for masters. it's a harsh cold academic world.

suddenly a million burdens seem lifted at once. what do i do now ? what do people do again ?

good news !

So they quashed all our parking fines - the whole shebang - $135! And not only that but the homecare team came around yesterday with some hand me downs from some other baby and a whole unopened pack of nappies - hooked up!

Abacus was a bit not herself last night after all the shots and wanted a lot of hugs and milk and then she slept in this morning - but she was supposed to wake me up for work! She's had a bit of a blocked nose recently but this morning when she woke up her nose had cleared a lot, maybe that's why she slept longer.

Sometimes it s a bit wierd to have a baby. Like I go into the room to get something and then see her sleeping in her cot and I'm like - oh yeah, we have a baby now. And I don't really feel like a dad, I don't feel I have changed at all, I'm just the same but now there's a new person in my life who I have to look after and I feel fortunate to be her guardian - but I don't feel like I'm her "father", she's just this cool little person with her own business going on.

shots

Abacus had her 6 week shots this week, even though she's still a foetus. It was her first visit to her GP and he was a really nice Dr. At first we were not going to mention that she was trisomy 21 because we didn't want him to make his opinions judged on his preconceived ideas of her condition, but we couldn't hold out long enough and had to tell him when he checked her ears - as Down Syndrome babies ear canals are usually narrower than normal. He did a few checks but most had been done many times before in neonates, as he pointed out, but of the checks he did she was sweet.

Then down to wait for the nurse to shoot her up. I was really nervous, we both were. She screamed pretty badly when the needle went in - but only for a couple of seconds, then she was happily sucking on her pacifier. Then the next leg was the same. We gave her a feed afterwards, which she downed really fast - and the nurse was hella impressed. Then she had to have the sticking plasters taken off, that happened all the time in neonates and she HATES it! But she only ever cries for a second or so and then is calm again.

And it was all free - even our prescription. Yay public health - even if the clinic looks a bit crap and there's patients across the spectrum from new born to elderly, from professional to homeless looking - ah, public health, like a public toilet but with medicine.

don't mention the house

So as far as I can see we're not getting a house. The analogy for the whole situation as I see it is like we were on one of those "reality" TV shows like Extreme Makeover Home Edition, where a family suffers a tragedy and then the TV show builds them a new house to make their lives a wee bit easier, a graciously noble act.

Only . . .

in our episode what happened was the TV show spent too much and the only way for the family to live in it was to pay more rent, which they couldn't afford. The other option was for them to pay the same amount of rent but live with a bunch of strangers - as none of their friends could afford that kind of rent either - which they didn't really like the idea of as they have a new born baby. And so a deal was struck, the family would rent 2 rooms and one stranger would rent a room and an office, to limit the amount of discomfort. But then the show retracted the deal and said the only solution seemed to be for the house to be rented out to a bunch of people who could afford the full rent, and for the family, who had already suffered through intense emotional stress and loss, to stay put in their old house with only the remnants of a fleeting dream about living in their own house, which will be sold in a few years for a profit - as it was a "good investment" for the show.

And that's putting it as inoffensively as I could.

formula 1

Abacus put on 150 grams to make her total weight 2125, I'm not surprised as she has become a hungry hungry hippy. On friday night she wouldn't sleep because she was hungry, and cried a lot of the night, and there was not much we could do because we didn't have enough milk supply and no formula - so it was frustrating and we didn't get much sleep at all, she definately wouldn't sleep in her bed, but she would sleep on my chest so I managed to sleep on my back for the last hour and a half before the stores opened.

When we finally got the formula she chugged 75mls of it, a few hours later she had some more and that's when the homecare came to weigh her, which isn't so good when she's just eaten, but the fact that she'd filled her nappy from the first lot of formula balanced things out - formula shit is a lot different from breast milk shit - and not for the better.

The addition of formula to our lives has eased the pressure of milk supply a lot and apart for a wee bit of a blocked nose (which paradoxically puts her to sleep while feeding and keeps her awake when sleeping) Abacus is finding sleeping a lot easier. Last night though on her 4am feed, when everything seemed like it would run like clock work, we had an emergency change when the formula shit managed to explode through the nappy and over all of her clothes, but it's a consistent model throughout time and nature that the addition of a solution will cause a problem somewhere else. But she's doing pretty well considering she's still technically a foetus (fetus).

Marion's on the case

So Marion Hobbs loved Abacus and is going to see what she can do. Yay! I hope she kicks some ass for us. Did anything else happen today ? She had a busy day with Danielle doing groceries and library runs seeing her local MP - her first political experience. We're just getting used to being all together by ourselves.

"I'm going to talk to my MP about this!"

So Danielle was denied maternity leave because they take into account your total hours for the year, and because she does after school care, and is required to take school holidays, her hours came up short. So then she tried to see about the sickness benefit due to missing five weeks work due to her emergency cesarean, but no dice. So then she tried to claim ACC which was also denied. Earlier that day, she'd cut out an add for Marion Hobbs - our local member of parliament - which said her door was always open.

And so.

She called the number and explained her case to a person who said "that's just the sort of case she would be interested in". And so she has an appointment tomorrow to which she'll bring Abacus for the cute factor, how could you say no to that face? And in an election year too, everything falling into place. Maybe we could also push to have the privatized car park banished from the public hospital grounds while we're at it - we want blood!

Meanwhile . . .
Abacus' homecare visits have been going well - (hmm my American spell check doesn't seem to know what homecare is, I wonder why? Hmmmm.) On monday the nurse arrived but didn't have any vials to take blood, so just weighed her, she had lost a bit. The next day she came back with vials and weighed her again, this time she'd put on about 40 grams. To take bloods we had to warm her foot with a flannel, then the nurse stabbed Abacus' heel, to which Abacus didn't respond at all, she just continued to stare around the room with her shifty eyes. Unfortunately the blood was not flowing and so she couldn't get enough for a sample, the other heel was no good either, though Abacus certainly felt that one!

A couple of days later Veree (A huge fan of Abacus) came for a follow up and to take more bloods as the first ones were unusable. This time she heated her heel with a glove full of hot water which worked way better, the blood flowed and by the afternoon we got the results, her white blood cell count was up which is awesome, but her jaundice was up too, but nothing to worry about - and no real surprise as she's as yellow as a Simpson. But everything is going fine, and nurses are alway impressed with her progress.

I think she's becoming more aware of things. She spends hours looking around with her wide vigilant eyes and I think she might be recognising faces amongst the flux of light and shadow.

go to sleep little baby

so, abacus has taken to sleeping soundly through large parts of the day and doing the snuffle shuffle at about midnight, where she becomes profoundly awake, looking around with the most cognizant of curiosity, even in the ghostly dim blue glow of the tv, which may actually favour the low spatial frequency of her infant vision than would the broadband of daylight. So i'm up putting her off to sleep - it s now about 2am! hehe. so i'm watching bbc world, the insomniacs dream, which served me well through my "early 20's" (i can say that these days). And reading to her about the young-helmholtz theory of trichromacy - if that doesn't put her to sleep i'm doomed.

getting forward to normal

at night abacus grunts and snorts and sucks like a foraging little hedgehog it's amazing how loud it can be. She's seen, heard and smelled quite a bit in the last couple of days compared to a month of white walls and lights and beeps and antiseptic atmosphere. She's been for car rides and walks around bundled up in a parcel of wool like an arm load of laundry - this is against "the rules" according to those who discharged her - but we're pretty sick of hospital rules, and it's not like we're going to do anything negligent. She's been really good though at waking four hourly for feeds at night and going to sleep afterwards.

It's been so much easier to not be stuck between different worlds and this feels like our life together is starting now.

home

So they decided we were competent enough that we didn't need the "rooming in" stage, so they said as long as everything looked good she could come home. And everything looked good! Last night I came home and sterilized the room, scrubbing down the walls and making a little neonatal ward of our own. I'll write more later.

good news

So we were getting annoyed with the fact that Abacus is still in hospital when she is not being treated for anything, coupled with the spate of tickets and less than ideal living conditions for ourselves and the rushing back and forth to the hospital. So we planned to start negotiations for bringing her home, or at least be given a solid explanation for why they are keeping her in.

We asked a nurse we really get on with (she was the one who was there the day we were first told about Abacus) and she said she was surprised that we were still in and went to find stuff out. She came back with the news that we were shifting rooms on Friday and would probably be home Saturday or Sunday - thanks for telling us everyone else.

Abacus has been getting better and better at feeding. She had about a 20 minute feed yesterday and then took 40mls from the bottle on top! And she was waking up every two hours for a while for more. Subsequently she gained 50grams!

At her 4:30am feed I gave her 60mls by bottle (obviously) and she was still hungry so I gave her another 15, and she was still awake and wanting more - but they said she couldn't. Then just as i thought I was going to be up all night getting her to sleep, the nurse we really liked came round looking for babies to cuddle, so I left Abacus in her capable hands.

So it's not long now (Jonno wins for closest guess)

a formal complaint

ok so three parking tickets now - and the last two aren't our fault. The first, we'd asked the a guy who worked for the carpark if we could park in the upper carpark with a ticket from the lower one and he said he was pretty sure we could, the next morning we owed another $45. Then they ticketed us again for not "properly displaying the display ticket" which was on the dashboard in plain sight of anyone with average vision!!! That's another $45. We're hella confused why there is a private carpark operating at a public hospital, where people are coming to be treated or visit those who are. We are about to start writing letters. It's bad enough worrying about remembering to update our parking every 12 hours, let alone worrying that it's a lottery even if we have a properly displayed valid ticket - a lottery you can only lose.

I feel like the more you participate in normal everyday activities the worse your life becomes, the tighter the noose of the laws and the pirates - give me my bicycle and my peace of mind.

also when we came in last night abacus was holding her pacifier and sucking on it. hehe. she's getting hungrier too, waking up every three hours to feed and so they're taking her NG tube out again - i hope it can stay out

no alarms and no surprises. . . please

So yesterday Abacus' white blood cell count dropped. The Dr came and spoke to Danielle about it and was quite inconclusive about what they thought. So we had all these ideas of immune failure and bone marrow transplants - because these things can happen with down syndrome. I guess our threshold for accepting the worst has been set quite low lately. So we had another long wait for bloods to get back, which showed her white blood cells on the increase. Another doctor came by and said they were just monitoring her and they weren't too worried and that it can happen with new borns. they explained how white blood cells are really high when babies are first born and then drop rapidly. I just don't know how many more of these surprises we can take, lets see!

chug-a-lug

Also . . . Abacus can drink 60mls by herself now, with no top ups, she went straight from 35mls at 4pm to drinking 60mls at 8pm. She's awesome!

an encounter

On friday we were in the supermarket and we saw this mother and her down syndrome daughter. Danielle wanted to go talk to her, but we didn't know if it was appropriate or not, so we didn't, but then they ended up behind us in queue, so Danielle asked the mum how old her daughter was, and the mother some what coldly said "you can ask her yourself" so she did, and the girl said "13" and then Danielle explained to the mother about Abacus, which made her cold exterior melt to reveal her rich chocolatey centre.

It was kind of our first interraction with a person who has down syndrome, definately since finding out about Abacus anyway - and though it was brief - it certainly made things a lot less scary.

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.