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So who knows when abacus will be home? Do you know? Her jaundice levels went up again, but nothing to worry about, she's just getting used to chuggin' so much milk. It gave me an opportunity to take some photos with her goggles on which had missed out on previously.

We're still living at the hospital, there are people who have been living there for months, we won't be there that long, but no one can really give us an estimated discharge time. She needs to be good at feeding and putting on weight and so she's feeding well, really really well, but the energy exerted takes off weight and the amount of milk is causing jaundice.

They put an NG tube back in, in the hope of getting her weight up, but i'm skeptical that it will lead to her being discharged under a false pretence with a greater chance of re-addmission - but they say that won't happen. It would just be nice to know some concrete things - but after all this I don't know why I still cling to the idea that things can be predicted. Still trying to swim to the side of the torrent and find our own direction, the current will ease soon.

first bath

so we gave abacus her first bath last night. first we had to wrap her tight in a towel so she looked like a giant kebab with a head sticking out of the end (see photostreamfor funniest photo ever) and washed her face. (actually she's not that much bigger than a kebab) Then we put her in completely, and she loved it. She looked as calm as a meditative monk, just floating and moving around as much as she could. Then we dressed her in green and yellow.

she's lost a bit of weight now that she's started feeding without the tube, but that was expected. Hopefully her weight will pick up again soon. Danielle has been madly rushing from hospital to school and back to avoid them having to put the ng tube down her nose again.

Oh yeah, and i got insurance on my lost camera. Yhuss!

look mum no cords

They unplugged Abacus so we can change her now without getting wires all tangled and carry her around like a portable. She just has a monitor underneath her which you have to remember to turn off when you take her out or a really loud siren goes off (twice) and nurses get a bit freaked out. They took out her feeding tube too because she's feeding really well at the moment - it's the last step before she comes home - which should be within a few days!!!
Danielle is staying at the hospital in a room around the corner from the neonate ward, the corridor to which looks like some 70's drab hotel, complete with crappy floral paintings hung on the wall. But the bed is really comfortable. She feeds Abacus every 4 hours, so nights are pretty interrupted.

So it won't be long before she is in our little flat with us.

Tonight we are giving her a bath.

changing rooms

Abacus is changing rooms to the one where she just feeds, So that's a good sign. She'll be away from all the cry babies (she doesn't cry much at all, but maybe that will change with age). She's quickly approaching 4 pounds, I'm not surprised with all the sleeping and eating.

We finally filled out her birth certificate, her now official name is:

Abacus May Catan

the professional

abacus surpassed 1700g ! she's getting a bit better at feeding now, you just have to catch her when she's awake in her zen like state - see photos - she'll suck a few times and then kind of get distracted or sleepy, but she's definately being more persistent - she better not get too good too fast or she'll come home before we move! but mostly she feeds through the tube in her nose - i wish i could feed through a tube in my nose while i slept - she pulled it out midfeed the other day, so now it's taped on tight.

my new camera came already - in matte black - so there's new photos up.

also. about the house, there are catalogues for kitchen sinks and fixtures, and there's one fixture called "the professional" - hrm, when you think in terms of a professional dishwasher it doesn't seem that flash, and I'm sure it would be out of price range for someone who actually held that title.

what changed ?

so, I guess i never really explained how we'd come to accept the fact that abacus has downs syndrome and how our opinions changed so rapidly.

well.

i guess we decided that we were making decisions based on our own reactions to having a disability, and that decision was baseless, you can't know someone else unless you give up all knowledge of yourself, and then you are stranded without an external perspective, so the exercise is pointless.

We have no idea how Abacus will relate to the world she is in, and all we can do is offer her everything she needs.

and the learning will be reciprocal. and the experience will be one that few get. and we hope to experience the other too, oneday, maybe soon.

And also, few friends or family came to us with words of sorrow. Sometimes i wondered if they knew she had downs, but they did, they were just excited to see her, they didn't care, they asked a few questions here and there about it, but mainly they just loved her and thought she was cute, and they loved us and were happy for us.

A while back Danielle postulated whether there were a few words that could make someone cry, in the same way words can make you laugh. And it turns out there are. Near strangers and one time acquaintances have been brought to tears when we tell them, and I don't quite understand the reaction, whether they're crying for us or for her or for the uncertainty of life in general. Their eye's sparkle and they catch a lump in their throat, but are soon talking positively, whether it be a spiritual connection or just optimism, they don't reside too long in the empty half of the glass.

There are still pangs. Maybe there always will be, but this is who Abacus is, and she was never going to be anyone else.

packing it on

Abacus climbed above 1600g today. She graduated from her incubator into an open top crib, and was wearing clothes. She's definitely starting to look a bit more plump, though new born babies still look like gigantic mutants next to her. She's chugging heaps of milk, about 35mls every 3 hours and everything else is still really good, breathing wise and glucose wise etc.

she kind of squeeks like a mouse sometimes when she's sleeping which is pretty cute. They were saying she could be out in as little as 2 weeks, which seems crazy to me, she's still so small, but she's so strong that they have little reason to keep her in. It would be good if she could stay until we move into our house, but it would be good to not have to go visit her too, like she was someone else's baby.

a new house

so the ongoing saga of buying a house which has consumed the periphery of our wee family nucleus ended in comic death throws. The agent appeared at the front door with the final offer, for 5000 more we could have the house, and they'd throw in . . .

the sandpit.

he mediated between us and the seller, who was kept at a safe distance on the other side of a phone call, in what seemed like 5 year olds in the play ground trying to barter lunch for toys. The fact that a deal worth over half a million could be decided by a sandpit ??!! So then there was a back and forthing of what furniture or "chattel" we could procure with the house, which turned out only to amount in a dryer, and yes the sandpit, which we don't even want. Though Danielles mum tried to push for some African chairs, which Danielle promptly protested for trying to steal their identity (the seller was African).

and so now we have a house


and sandpit

lost

i lost my camera! That's why there is no stream of photos pouring in. (I can't beleive it! I have to buy a new one now because it was so cool.) but abacus is growing, she put on 40g yesterday, and her skin colour is getting nice looking and she's still really cute.

discharged

Danielle was discharged on sunday, we had contemplated staying in, but in the end decided it was best to just get on with things, anything else was just delaying the inevitable. We had three weeks of school left and it would be dumb not to finish.

The last few nights in hospital, our hours of sleep were notched off as the hours between bottles of milk, with tags marking the two hourly expressing sessions, and we would go down for abacus' cares every four hours.

there were a lot of visitors over the weekend which was cool, at times a bit overwhelming, but we just had to not feel like we had to "entertain", other wise I probably would have malfunctioned. Our flat was akin to a marai on saturday night with the floor littered with bodies (glad i wasn't there) which I guess was fitting as we had hangi for dinner (we kept busting danielle out of hospital for dinner, one night the hospital food was some chicken, egg and glue combo)

It was odd to be away from abacus. Unable to just go see her when ever we wanted. She was not even a week old and already didn't need us.

nights

it s at night when everyone has left us that things are hard, and the unsettling feeling creeps into the lonliness of a quiet hospital room.

with the sounds of babies crying down the hall.

there are rules

neo nates have strict rules.

1 visitor at a time accompanied by a parent (a parent of the baby - not your own parent) grandmas are really good at breaking these rules, somehow there is just some overpowering gravitational force from babies which lure them in, in some hypnotic reverie, i don't even know if they realise they're walking in or just sort of find themselves standing next to the incubator.

anyway, the nurses bent the rules at one stage so that abacus had about 6 or 7 people surrounding her because she's so awesome with such awesome friends.

you also have to wash your hands thoroughly before coming in. i noticed in the bathroom at uni later that i had spent about 5 minutes washing my hands like a surgeon.

at night time there is a banquet table for the nurses in the corridor of chocolate and chips and m&ms etc etc it looks not unlike a kids birthday party. they work 12 our shifts 7-7 and have 4 days off.

a house

we left our mums/moms to take care of each other and when they showed up they had decided they were going to buy us a house.

wtf?!

Someone was doing an echo monitor when we arrived to see abacus, a heart test with a sonogram, as there are defects associated with downs syndrome. so far though her heart is looking strong, so there shouldn't be any massive problems.

danielle started to express (i love that it's called expressing) using a breast pump, we got 5mls by syringe in the morning, which we were stoked with, then got about 50mls with the breast pump later! and then like 100mls and suddenly we had a massive surplus that needed to be frozen.

these days are a bit blurry written so far on. i know every day was getting a wee bit easier, there were still a few tears and a disbelieving feeling, but we weren't alone and that was important.

outside

we busted danielle out for dinner that night. we went to chow. and leaving the hospital i saw a guy sniffing glue and i got angry that there's all these people with every physical capability that do such stupid things. and all the stupid people who have perfect babies. and all the accidental pregnancies that turn out so well.

and at the restaurant, looking around at all the people, i wondered how abacus would fit in, how we would fit in with her.

we checked back into the hospital and woke every couple of hours to express a few mls of milk and take it down to her and change her, which in the neo nates ward is refered to as "cares".

We had some good cuddles "skin to skin" or "kangaroo cuddles" with abacus, which is good for a multitude of things - as i learned last year in my neuroscience class - yay. It's when she is on you that you realise how tiny she is.

you can't plan life, you can only give it suggestions

the morning after abacus' birth, we went down to visit her. the neonatal ward is stiflingly hot and danielle still in a wheelchair and recovering from intensive surgery, got overheated and dizzy while we waited for the dr's to examine abacus, so she had to go back up stairs.

I went back down and the dr asked to see both of us, but danielle was just not up to it when i told her, and she was upset wondering what might be wrong with abacus.

I went back down and waited in a room for the doctor to come, a nurse stayed with me and was asking me mundane questions about my life, trying to keep me distracted, i just wanted her to leave me alone, my head was busy sorting through every possible scenario. It took about 45 minutes before the specialist came in and told me that there were some facial features he had picked up which were consistent with downs syndrome and they wanted to run a blood test which would take 24 hours to process.

my head was spinning. it made no sense. we'd planned to have kids young to avoid this, the ultrasound test had said we had a 1 in 4500 chance of this happening. I was numb walking up stairs to danielle with the nurse, who I had agreed should come up with me.

Mum and Danielle looked so happy when I walked in and delivered the news which left a nauseating numbness through me. It was probably the furthest thing from our minds when she was born, she was just supposed to be small, it seemed impossible, a bad dream.

The doctor came up a bit later to talk to us both, and gave us a few glimmers of hope, which i would at times grip tightly to over the next 24 hours. there was a lot of confusing tides and undertows wrenching my thoughts between hope and and down into the depths of its opposite. We knew how we would react if the news was good, but no idea if it wasn't.

we isolated ourselves for the period of time we didn't know. It was the most stressfull emotionally exhausting time of our lives and i would wish it upon no one. The few visitors we had were social workers and our midwife Willow and the doctor who first picked up abacus' slow growth. He was sweet to take the time with us, Willow knew him and had sent him up, and he maybe gave us a few more shreds of hope to float upon.

one thing that kept going through our heads was not the obstacles she would face from her own shortcomings, but those she would suffer from the shortcomings of those gifted with the all the faculties to know better. We wanted to go somewhere where she would never know of the world she may never understand, live on a ranch in costa rica, in some simple understanding of life. (this is all written as best as i can as how it happened, and the views we held early on were not ones we would embrace later)

and my thoughts would tug continuously to hope, and how it would feel to be told they were wrong, the party I would throw, the things i would buy without reservation, how I would write about it in the blog, and then the dread would bubble up again, telling myself to stop kidding myself. and danielle asked of all the social workers and doctors and nurses and midwives, all of the questions i wanted to ask but didn't know how, unashamedly telling them her feelings and questions and beliefs.

we had asked mum to go so we could be alone. but later in the day, after we had held abacus for a while, i got a text from her just before visiting hours saying "don't be mad at me but I couldn't leave without seeing her again" i asked where she was and she replied "down stairs in the toilet" at first i thought she had stayed there for the 4 hours that had elapsed, but she hadn't. after a visit she went on her way. i think she was scared we would reject her but we'd already fallen in love with her.

I caught a glimpse of the news, obama was leading, i didn't care a bit, though those thoughts had previously consumed me.

they allowed me to spend the night in the hospital in a push out bed next to danielle, so long as i didn't walk around the ward in my undies or naked. we didn't sleep.

as time passed without break into morning I think i had grown more settled in the fact that the test would be negative. Willow came by and said she'd talked to Simon and that he'd said they often run the test and it comes back negative. I told her I didn't want to think that way, but I was secretly indulging in it.

After expressing milk with a syringe for 20 minutes, for about 5mls, which then we thought was awesome (and it was) we decided to go outside, something we hadn't done in a few days. Atmosphere felt nice, the pale warm sun and the wind and the smell of the air.

Then we went to see abacus, there were people fussing around her and soon after the doctor and Simon came to get us, earlier than we had expected to take us to a room where my anticipation of the negative test was crushed by the words "I'm afraid there's no easy way to say this . . ." Simon went on to tell us how big hearted and lovely downs syndrome kids are and the support we could get in Wellington. He did his best to tell us everything with a sympathetic smile that conveyed a sense of hope for our predicament. Then they left us alone to cry and digest those bitter words.

It felt impossible to connect things. To draw coherency between the anticipation of birth and what we faced now, as if we had walked through a doorway into somewhere else and I craved to just as easily walk back. The anticipation of hope somehow lingered as though this hadn't happened, as if we were still waiting for them to tell us the good news. Or that we were still somehow waiting for her to be born.

And we anticipated how to continue with the life we had, how much would change, what would we have to give up.

We returned to our room and began the process of telling everyone, phone calls and texts went out and were answered and soon our room was filling with friends and support, who had only concern and no sense of tragedy in their faces.

And danielles mom knew none of this. She had boarded a plane before we knew the test was even being done and was about to arrive any second. When she called the ward from the airport she was saying she didn't want to go straight to the hospital with her bags, when danielle bluntly replied "Your granddaughter has downs syndrome so just come to the hospital". And soon she arrived.

Our friends reactions to this have been the most theraputic, calming and settling influence in this time, and it is the love that i get from them that chokes me more than the news we were given. It has been the most loving moment of my life. And I want to thank you all for that.

abacus 06.05.2008

Abacus was born this afternoon at 13:55 by c section and weighs 1506g (3pounds and a third).

The operation went really well and was actually quite fun (danielle s the one who used the word fun) We forgot to bring a CD to play, so Willow our midwife went and got some from her car, so it was not unlike a party. Danielle went to nursing school with one of the nurses, so it was good to have a familiar face on the medical team, who were really nice, fun and funny and hella fast. The anesthetizing took the longest, getting it centered, it would send electric shocks down one leg or the other until it was centered, and then it just felt warm "like I'm peeing myself" danielle described it as. As soon as the anesthetic was done the operation started, and yes it did feel like someone was washing dishes in her. Before long we heard the draining of the water and wee abacus was out and crying a pterodactyl squawk , it was all over so fast. Danielle was asked if she wanted to keep the placenta, she replied that she'd like to throw it against the wall for all the nausea it caused, I guess that's a no then, said one of the midwives. (They also removed the infamous elusive cyst.)

Abacus was taken to a small table and wrapped in a towel and they assessed her condition which was deemed awesome. So they put her in an incubator before pausing at danielles side for a quick drive-by greeting and then I followed her along up to the neonates ward, where she was transfered to her little plastic box and hooked up to machines and fluids. And all of this didn't seem out of the ordinary at all. I spent some time with her, her breathing was going well and the estimated she would only need it for about 4 hours, which turned out to be true. The feeding tube had a part that fell on her mouth and she started sucking on it, which was cute. Everything was good with her, she was just teeny, about half the size of a small baby, but she didn't really seem that small somehow. All she wanted to do was sleep. She looked so cute and her toes looked like they were made out of clay.

Meanwhile . . .
Danielle was recovering upstairs with Laura, getting feeling back in her toes and expressing milk (eerily she'd started lactating the night before). She was really happy and calm about everything that had just happened and still dreaming of a huge feed.

I took Laura and Mum down to see abacus and we spent an hour with her (only 2 at a time are allowed) by the time we'd finished ogling and prodding her ethereal skin (laura said she felt like a raspberry and mum said it was like touching nothing and i concur on both points) danielle was already back on the ward. The numbness of drugs was beginning to recede and the pain was seeping in. She managed to sleep through it, and managed a bit of jelly to eat. At about 8:30 she was able to go down in a wheelchair to spend time with abacus for the first time.

It's been a really good day. Realy, really good. Everything couldn't have gone better, even though the surgery was pushed back a few hours due to an emergency twin delivery (we knew the parents and we just hope their girls are doing well). We got a lot of womans weeklies analyzed in that time, and i disgusted myself in almost finishing a crossword about tv shows. I was nervous before hand, the same kinds of nerves as I would have before a concert or a job interview, I just get nervous at the anticipation of an event, but as soon as things got going all the nerves went away, and everything felt as though it was just meant to be. My lack of sleep may have helped by lending surreality to everything, what office worker ever imagines themselves wearing scrubs in an operating room, listening to electronica? Did that sound like Doogie Howser or Sex In The City ? I hope so.

SURPRISE! oh, and . . . SURPRISE!

so the doctor came by soon after the scan this morning, and told us it was time to get things moving. He said they would start an induction this morning and abacus should be here this afternoon, he just needed to check with his consultant. So we start calling people like midwives and stuff and then a bit later he came back and told us that due to danielles not being ready for labour, nor her body never having had experienced it, it was for the best that Abacus be delivered by epidural cesarean , and that as the neonate ward is full, due to 2 deliveries of premature twins, it would be best to do it tomorrow.

And so everything changed again. And now we know exactly what's happening we just have to wait for it. A little in limbo, like pausing time right before something is about to happen, while knowing that the time elapsing will do nothing to prepare you or educate you for what is going to happen when you unpause. I think in a couple of days from now, when everything has settled down into some sort of consistency, I'm going to sleep like a hibernating bear.

The whanau group came by and brought by a pastor pimped out with a huge iced out cross. hahaha. They did a karakea, holding hands in a circle around danielle, which was nice. she liked how it was like a tribal ritual for birth, with an element of babylon 5.

The anesthetist came by and explained what would happen during the operation tomorrow, she said people described a cesarean with epidural as feeling like someone is washing dishes in you. hmmm.

They monitored abacus a lot of the day, she's still doing well. And Danielle is doing amazingly. So we just have to try and sleep tonight. When they kick the visitors out at night, a voice comes over the loud speaker that says "if you are not a woman or baby in our care can you please leave" do they really have to tell the babies they can stay ?

( last night i was setting up a flickr account for abacus that would be just of her photos, I put in her date of birth, and a bubble came up that said "are you really from the future?" haha. yes! )

"to hell with the test!"

haha. everyone has been really supportive of us, I emailed my lecturer, (an old guy who reminds me of the professor from Futurama) to tell him I'll miss the test on monday and he said "To hell with the test, you've got more important things to worry about" hehe. cute.

So I confused things a little yesterday - instead of saying "it seems less likely it'll happen on monday" I should have said "there's now also the possibility of it happening later" but it's nice to know people are reading this! We won't really have a clue about what's happening until tomorrow morning, we don't even know what time tomorrow morning we'll know. What we do know, is that it's a matter of weighing up whether its best to leave her in or take her out, and the decision will not be made lightly. Danielle wants it to be tomorrow because the menu tomorrow night sucks. hehe. Now that the wheels are set in motion, we're just looking forward to it.

We had heaps of visitors today which was really nice. Danielle has soooooo much food now. And is fully hooked up with internet and everything.

It's kind of weird how abacus seems to have this personality when she's inside, you can somehow imagine her as consciously making her movements, but it will be absent when she is here, until she has mastered her new environment. that's all for today. tomorrow will be newsy

neonates and kath and kim

and so the doctors came around today, and it seems a bit less likely that the induction will occur on monday, but definitely not out of the picture. What they'll do is another scan on monday morning, and if things haven't deteriorated they'll keep monitoring for another few days and do another scan, repeat, they won't induce unless it's absolutely necessary, so there could be a lot of time spent in hospital.

in the TV room there's a bunch of videos, one says "breastfeeding 3 hours" another is "breastfeeding for twins" - is that twice as long or half as short ? anyway, we watched one about cesarean s from the 80s, with these trashy as australians, so it was informative in a kath and kim sort of way.

In the afternoon we went on a tour of the neonate ward. The waiting room walls were filled with the photo stories of former preemies who had grown into strong regular babies, they were as premature as 17 weeks, so we felt a lot more at ease, with abacus being what they keep referring to is the "target 32 weeks". A nice doctor spent a lot of time with us, she talked a million miles an hour and familiarized us with all the incubators and machines and teeny babies and made everything look benign and purposeful. The ward was bustling and stuffy, filled with beeping machines and concerned visitors and parents, and doctors and nurses. We may spend weeks in there so it was good to make sense of it before hand. Some of the babies were so small, with tiny fingers, and limbs and heads, but they were watched over and looked after, and they'll all be adults one day.

And so another day .

Whanau Services

Still on Friday - but I thought I should break up that saga. When Danielle was a student at the hospital, she met a guy named Heta, a former orderly who ended up being asked to run the whanau service, which is social support for maori patients, basically because he's a really good dude and a hardcase who gets on with everyone. And so danielle requested Whanau services when she checked in.

A little while later the admin guy (who's really nice - everyone is SO nice) comes around asking if she knew what whanau services was, and that it was for maori and pacific islanders and did we fit under that category? - looking at us both, a little perplexed - so danielle explained how she liked the holistic approach of whanau services, how they just chat with you, without a notepad, or monitoring equipment, just see how you're doing - and so the admin guy says that's choice and he'll see if he can set it up,

a few minutes later Heta and this woman turn up, and he remembers danielle, and says her baby is tangata whenua and they'd be happy to come by and chat next week. sweet!

background story up to friday 2nd may

So on our first ever ultrasound they found a 10cm cyst which was written down as 10mm. So at the next scan, how it looked was, it had grown 10 times the size, though it was really the same size. So they booked us in for another scan to see what was going on, this time we were told there was no cyst at all, just an amniotic band which was nothing to worry about. I should point out at this point that they were all different people each time - i should also point out that they were all really nice.
So now we have 3 scans with 3 really different results so Willow (our midwife) says that we're going to have another scan at the hospital and a meeting with a specialist to see "what's going on". What was going on was there was no amniotic bands at all but there was a 10cm cyst, and it was too late to do anything about it - but more interestingly, between the last scan and this one, abacus had not grown as much as she should have. So now we have to go back every two weeks to monitor the growth. (which we would never have known about had it not been for the inconsistencies with the original scans - the cyst it turned out was actually pushing the uterus forward so it would be hard to detect by feel or external measurement that she was wee. So, lucky)

2 weeks later

We come in for our new biweekly scan - and she's grown, but is still measuring 2 weeks behind (30weeks instead of 32) and there's quite high resistance from the artery in the umbilical cord that takes blood from abacus back to the placenta and that could be the cause of her small growth

. . . and so we meet with the specialist and she says that they're going to give danielle a shot of steroids and then she can go home and get her things and check in to hospital for the weekend for monitoring for a likely induction on monday - and we're like "wait, what ?!" and she says, it's best to just say it, because there's no easy way to say it, and I appreciate it, because what else can you say? And all of a sudden she could be here on monday instead of 2 months from now, and are we ready? I don't know, probably? I guess we just have to be. We don't even have a last name yet!

And so . . .

we go home and get stuff, and it all feels surreal, like alternate time, we just email people, and call people, and get things in order and suddenly Danielle can't work, and suddenly my test on monday and the book i was going to get out is irrelevant, plans for a time which was usurped by the constant flux of which we're not in control, and are exonerated by that fact. and so we continue and get mexican food and return dvds and go and check into hospital. and lets see what happens.

everyone is supportive and understanding, and we're getting really good care. Everyone is calm, and there's no alarm, no panic. Abacus is healthy, her vitals are all good, just a wee bit small, they just want to make sure she's in the best place to get what she needs. And Danielle is probably most calm of all, and most accepting of how everything changes and how no one should try to fight it