Fetal Medicine appointment

Well, nothing’s changed really, but it feels like heaps has – I’m in such a different “place” today than yesterday.

Yesterday we were told that in all likelihood, bubs would die in utero, and it was a choice of continuing the pregnancy to let things happen naturally, or terminating and getting it over with.

Today we had the appointment with a fetal medicine doctor at the hospital. I expected her to come in and tell me about the doom and gloom of my pregnancy and “where to from here” which I figured would be a “recommended” abortion. However, it wasn’t anything of the sort. She came in, and after asking what I knew about Turner Syndrome (I knew a bit from Google, but I like to hear confirmation ) proceeded to tell me about it.

In a nutshell –

Babies born with Turner Syndrome are always female (the syndrome is the deletion of the X chromosome from the sex chromosome – so instead of XX it’s X0 / X- ; this can occur on only a few cells of the body, or on every single cell). And because they don’t have the complete set of female hormones, they are invariably infertile – they have the right organs, but the ovaries don’t work at all – regardless of severity of TS – so they’ll need hormone therapy at puberty (both to grow but also to develop sex charactistics) and they are universally short statured, tho exact height reached depends largely on how soon growth hormones are started (some girls aren’t actually diagnosed until puberty fails to happen).

The other main complication is heart issues – usually a narrowing of the aorta. This doesn’t happen in all TS cases, but whenever narrowing of the aorta happens they check for TS, as they’re that closely linked. The severity with which this occurs varies widely – can be an issue that causes death before birth, but it can also be light enough that it’s not a problem either at all or until adulthood. Regardless, there are things that can be done to fix / help fix this, so even this isn’t a death sentence, just something to watch for. And it can be picked up on ultrasound antenatally, too.

Finally, there are often mild – moderate problems with the kidneys – most commonly the kidneys either fuse together (so they become one) or one or both is oddly shaped. However, there is usually decent kidney function at least until adolescence, and although TS girls are at significantly increased risk of diabetes, this isn’t an absolute either – some TS girls have no kidney issues whatsoever.

Other than that, there’s some very mild physical differences – the short stature, commonly a wider neck, sometimes a low hairline, stubby fingers/toes and/or puffy hands/feet. Very little, however, that will immediately set a TS girl apart from her peers physically, and most TS girls only have a couple of these features rather than all.

TS girls also have no cognitive impairment and no muscle / movement issues, and can live completely normal lives.

So I took that in and said “well that’s great [and I knew most from my own research anyway] – but everyone has told me my baby wouldn’t live to be born, so it’s not that much of an issue is it?” The doctor thought about this and said “we [doctors] like to present the worst case scenario, so that it’s not a shock if it happens.” She went on to say that as far as the pregnancy is concerned, the biggest problem at the moment is the cystic hygromas, and there’s two main ways these can progress – either they gradually and randomly disappear on their own, and there’s no issue – OR – the fluid in the cysts starts migrating, and can interfere with the organs. However, the fluid / hygromas are clearly visible on ultrasound – so this can be monitored to tell what exactly is happening. The doctors can’t *change* anything… but they can warn of which way things look to be going. At the moment it’s just plain too early to tell; it’s all a matter of wait-and-see (story of my life these days!).

Soooo… hubby is much more optimistic about this because even though I told him most of it he had pictured a severely disabled person, that would need help getting around (??) and never be able to function independently, and this isn’t the case at all. Now he knows the facts, he’s a lot happier to support me in continuing the pregnancy, which is nice And I think he’s quietly optimistic about things too.

Myself… I am still ‘prepared’ to lose the baby, and that is still a very definite possibility. However – there seems a LOT more hope than it seemed like yesterday even though the situation is exactly the same. I knew yesterday there was always a chance of a miracle – but having a doctor tell me that there’s a chance, too, makes it seem more real. Right now it’s just wait-and-see. I’m classed as a high-risk pregnancy, though the risk is all to the baby and none to me (any more than with any other pregnancy). I’ll be scanned every 3 weeks or so from now on, including having a fetal ECG to pick up any heart problems so that we’re prepared for them, and although we can’t ‘do’ anything about the cystic hygromas, we can at least watch what is or isn’t happening with them. Finally, my midwife is still my midwife and my “main” carer – I just see the hospital a lot more in between.

My baby is real.

Though, of course, that’s not obvious to anyone yet.

And of course we still don’t have official word on what will become of what is currently the ‘fetus’, and in fact likely won’t have a full diagnosis for another couple of weeks at best.

But my baby is real.

I’ve started thinking of the baby as a her, though that’s really only based on the speculation that it could be Turner Syndrome (which only effects females). We’ll find out for sure either way, but for now bubs is a she to me. I have a name tentatively picked out for ‘her’ as well, though as yet no idea whether D will go along with it.

No firm decisions have been made, or will be until we have more official results one way or the other. However at the moment I’m leaning very strongly towards letting nature take its course, whatever that may be.

There’s a hope in me as well that even if the baby has no chance at life outside the womb, that she’ll be able to hold on until 20 weeks. The reason for that is multilayered… but largely that’s because that’s the date at which point the loss of the pregnancy is classified as ’stillbirth’ rather than ‘miscarriage’ in New Zealand. Babies born from 20 weeks need a birth certificate and a death certificate. They officially exist. Before that, the family can make whatever prepartions they choose to… but in the eyes of the government and medical people it’s just a ‘late miscarriage’ rather than a true loss of life. When I first found out the news, I was anxious to avoid the process of labour if the odds were we weren’t going to get a live baby out of it – but since then I’ve learned that most terminations done from 13 weeks gestation (of which I already am, nevermind the two weeks the CVS results will take) are hospital based inductions of labour rather than a surgical D&C. If I have to labour anyway, that’s one less reason to terminate, and I don’t have a lot of reasons to do so anyway.

In the meantime, we are still absolutely hoping for a miracle, but preparing for the worst at the same time. My emotional state changes on a daily basis, but today I think I’m kind of okay with it. By no means is this what I wanted or envisioned for myself and my family… but I can get through. I do believe there’s a reason for everything, and although I don’t know what the reason for this is, that doesn’t mean there isn’t one. I don’t know if it will make me stronger as such… but maybe it’ll show me that I am already strong enough.

The world is upside down

I don’t usually post very personal things here – personal thoughts and ruminations, sure, but I try to keep the mundane part of my life, the day-to-day, largely out of it all.

But that will change for this post, and likely for the following for awhile as well, just so I have a place to write and process things.

I am pregnant with my third child, and I had my 12w scan on Tuesday. I thought everything was going fine, sonographer showed me the head, the face, the little arms, the beating heart, the abdomen, etc… she mentioned she “wasn’t entirely happy” with the neck measurement but I took that to mean that she couldn’t get a good measurement due to the way bubs was lying (which happened with K1). She had the radiologist look over the films after she took all the pics possible, and radiologist brought me into her office and said that things weren’t looking good – she said the neck measurement was quite thick and that led her to think there was quite a high probability that there was a chromosomal disorder. She also specified she didn’t think it was Downs, but probably Turner Syndrome or another one (which she did tell me but I can’t remember). The paperwork she gave me listed a 1:4 chance of a chromosomal disorder of some type.

So I went home, with films and a copy of the typed report (which is slightly different to what they sent my MW as that one had handwritten notes all over it).

Midwife rang around 5pm, and asked if I’d been told the situation. I said I was told it wasn’t looking good but not details. MW then elaborated that as well as a very thick back of the neck, the sides are measuring ‘wrong’ too – basically the neck is webbed, the sides are connected still. In addition to that, there’s a posterior fossic cyst in the brain, something up with the lungs (she did tell me, but I had kids in the background) and part of the stomach is outside the body. Soooo…. it’s not looking good, and it’s really more than just a ‘bad measurement’. At this point the word from both MW and radiologist is that it’s probable the baby will not survive the pregnancy, and even if so will likely die shortly after birth. I’ve been referred to the hospital, where the plan is to do another scan, some blood tests, and probably and amnio and/or CVS. MW wants me to be seen this week – so ideally we should know sooner rather than later.

So, that’s the facts as we know them now.

The rest is…. everything else I guess.

Although I realise nothing is set in stone and there IS still a chance of either life and/or a good healthy life – I’m very much not ruling that out – I really need to prepare myself for the liklihood that’s NOT the case. Which means dealing with the fact that if the baby is not going to survive – be it til 40 weeks or 2 months old – what do we do? I never imagined I’d be in the position to have to consider aborting my baby, but that’s what we could be looking at. And it sucks, because I WANT the baby, but I don’t want to carry to term and go through labour to deliver an already dead baby. Nor do I want to give birth to a live baby to watch it die in the first hours / days of it’s life. I don’t know if I could cope with that. To me, it does seem easier that if those are our choices…. it’s easier to do it now, when there’s less bond with bubs, where I can feel even slightly more removed from the process. I’ve seen the heart beating and bubs bobbing away and on the one hand I treasure that.

My religion has been kind of self-defined lately (tho I still am very spiritual) but I’m freaking pissed at God / Goddess right now. I don’t know why shit happens – to me or anyone – but obviously it does happen. But I’m still unhappy with God.

I’ve been thinking, even before I was told anything was wrong, that this would be our last baby. I’m still thinking that – even if this one doesn’t make it one way or the other…. I think I’m done. I don’t think I could cope with all the heartache, worrying, and paranoia anymore. I’ve been blessed with two delightful, gorgeous girls…. and maybe I should just leave it at that.

I am nobody special

I was driving home from visiting a friend tonight, and passed one of the local high schools. The message board below the school’s sign announced the name of one of their students as having won a World Youth championship something or other.

My instant thought was – I’d like my name displayed like that, to be recognized for a stunning feat or achievement. And that’s when I realised, it never has been. I am nobody special. I was a good student most of the way through school, but never absolute top of the class. I’ve never broken any records, done anything truly amazing, been abnormal in any way really. Sure I had acheivements and accomplishments in my own right throughout – but nothing that wasn’t a totally run-of-the-mill thing. I’m not an athlete, I’m not a world chess player or a prodigy musician.

So, okay, no big news flash, right? But in a way it really was. My parents, like any doting parents building up their child, raised me ‘knowing’ I was special and gifted and wonderful, with a healthy dose of responsibility bestowed upon me. I was Intelligent, I was Gifted, and thus surely I would Become Somebody. It worked great in primary school – I figured I was the best – or at least among the best – and that was, of course, my natural position.

So when I grew up a bit, and more was required of me, and I learned to think for myself and to question, I saw myself as decidedly average. And ever since then I have believed that I am a tragic let-down, as I obviously haven’t come close to fulfilling my potential. Which, maybe, is true. Maybe every ‘normal’ child really has the potential to become the next Einstein, Picasso, Thorpedo or similar. But all I’ve seen is that I am not standing out, I am not excelling above the rest of my peer group, I am just humming along fairly smack dab in the middle. Of my graduating class, one of my classmates works for Congress. I’m not in active touch with her but I’ve always held her as an example of where I ’should’ be. Not that I want to work for Congress – but that I should have a similarly high-flying, top-of-my-field job. Thus, my staying home with my very average husband, raising children in a barefoot but not pregnant type situation was clearly me wasting my life. I have always reckoned that I am the epitome of a waste of potential.

Tonight I realised I’ve never had my name in lights. I have not tragically fallen from any platform. The only platform I’ve ever been on has been attached to my shoes – and when I fell from that, I tossed the shoes out and bought Crocs.

I’m not eating.

Okay, that’s not entirely true.

The past two days I have had a little bit to eat. Today more than all the previous three days combined, but still, not really eating. By which I mean, thoughout the entire day I had half a bannana, half a small-medium bowl of porridge, and half a small slice of mince and cheese pie. The ‘half’ of everything mainly because I share with K1. Though that is planned sharing, but I’m not dishing up portions like I usually would for myself – the portions in this case are something in between enough for Katerina and enough for me. So, she eats first, about half, and I finish off the rest.

That’s the technical side of things.

I have a suspicion there’s a giant mental trip going on behind the scenes, because otherwise I appear to be healthy. External stuff at the moment sucks, forces have combined so that we have very little food in the pantry and our food budget has been almost halved due to one thing and another. And I keep thinking about wasted food, and food that gets thrown out that doesn’t need to be. We’ve improved a ton in that regard in the past few years, by smarter storage and smarter planning and simply less buying… but stuff still gets thrown out. DH is worse than I am about it, OCD and gray areas in food hygiene don’t mix well. The bulk of what’s getting thrown out around here mostly is leftovers of cooked meals. DH has developed a snobbery against eating leftovers in the form they were originally (i.e., if I have leftover chicken that I turn into chicken soup or casserole etc it’s acceptable – reheating the chicken is, apparently, not) and with ’saving’ portions for him or for the kids for lunch etc, it’s getting wasted. And I keep thinking, well, not only should we not try to save anything aside especially (i.e., just eat it as we can) but if I didn’t actually serve myself a portion, but just finished the children’s…. that’s less wasted. And less cost overall. Instead of having a single slice of pie leftover and lonely, we can have half the pie left, which can be frozen and brought out on another night when we’re lacking motivation, and not seem so much like ‘leftovers’. Instead of throwing out half of Z’s cereal, if I ate it, then that’s breakfast sorted for both of us, no food wasted.

And there’s the final huge factor in that if I’m eating less calories, not serving myself huge portions, not eating mindlessly, but just small amounts here and there…. well, that should be good for my waistline and I can stop hating the way I look and the fact that size 18 stretch jeans never fit even first thing in the morning, because they need to be stretched to fit each time. Which just makes me feel fatter, each time.

The rational, or sensible, or logical, or whatever side of me thinks that everything about everything I’m doing is just wrong. But then, everything about everything I WAS doing was wrong too – hello, I’m obese. After going along for years doing things somewhat knowingly wrong – ‘right’ seems a very hard thing to achieve.

Married, with children

I am not a fan of my husband today / tonight…

Because I’ve been full-out studying, he’s had charge of the girls most of the time from Tuesday through Saturday (tho I did Friday by myself..). On Sunday morning I mentioned that the house – the lounge in particular – was a complete tip. Since he’d made the comment only a week or so ago of “THERE. I tidied up. Now keep it this way, okay?” I thought it was only fair that since he didn’t clean up through the day like he tells me off for… he could tidy up.

He said he would.

Tui ad anyone?

Nope, he didn’t tidy up. In fact, he contributed further to the mess by giving the two year old rice bubbles, to eat in front of the TV. Which of course meant that Little Sister wanted in on the ricey bubbly action, they had a war, and the carpet got most of the rice bubbles. Walking in the living room was seriously like wading through a sea of half-eaten toast, and rice bubbles, and I don’t even want to know what else… not to mention the cube of Duplo that had been tipped everywhere, or the various drawing papers everywhere, or the clean washing covering the couch and spilling out of the washing basket….

… which doesn’t take into account the overflowing dirty washing baskets in the laundry

Plus, he didn’t leave the house until 9:30, meaning he was guaranteed to be late home. His only ‘reason’ was that he couldn’t be bothered getting his A into G in a timely fashion…. as neither of the girls had their nappies changed, or were dressed for the day. So he was hardly all-consumed taking care of them.

So today…

I folded 2 loads of clean washing.
I washed and dried 3 others.
I did 2 loads of dishes in the dishwasher and one by hand.
I tidied up the lounge, including mopping up after Z2 spilled her orange juice.
I vaccumed the lounge.
I cleared the dining room table of stuff we need to / mean to sell, and moved it into the bedroom.
I tidied the bedroom (bar the above).
I photo’ed 27 items to list on TradeMe.
And I listed a bunch of stuff on TradeMe.
I prepared a lasagna from scratch (bar the pasta)

And I dished myself, and he then dished himself, and left the lasagna out. He came back about 10 minutes later to find that the cat had helped himself to what was left – over half of it Meaning of course that now DH wants to chuck out the rest.

Yes, dear, you’re welcome…. I love you too.

Mememe

I don’t do this often, but this is a blatant cross-post on this and my Knitting Blog, because it’s really only not very knitting related So if you’ve read one, you’ve read both…. just so you know.

Thanks to SweetP for drawing my attention to this meme, I’ve been really slack about reading the blogs I follow lately – need to get back into doing it. Meme’s are great for that – both for writing and reading blogs.

What is your current obsession?
I guess I’m between obsessions at the moment, which is probably why I feel so restless. Once I get some more money though I’ll put my World of Warcraft account into credit and probably start playing again – I’ve been on a self-imposed ban due to needing time to focus on my study… but that’s finished as of this past Thursday, so I am a free woman.

What is your weirdest obsession?
Some people think knitting / yarn is weird. Other people used to think my compulsive buying of books is weird. (I don’t do it anymore…. I switched to yarn but also to a single income and now don’t ‘compulsively’ buy anything). Other people think my babies wearing cloth nappies is weird. Really, it comes down to a question of a definiton of weird.

Or, I could be simple and say – banana splits.

What are you wearing today?
Pajamas at the moment. Though to my credit, it’s midnight here.

What’s for dinner?
What WAS for dinner was KFC because I am lazy and a fat girl at heart. Dinner tomorrow (today?) will be pork mince with lentils and couscous though. Assuming the vile weevils that have made our pantry their home haven’t bedded down in the couscous that is.

What would you eat for your last meal?
Mexican. Nearly anything mexican.

What’s the last thing you bought?
Technically, KFC dinner. If we’re not counting food…. then a couple (small!) pieces of Tupperware.

Do you have a nickname and/or handle, and if so, how did you get it?
I go by ‘Wonder’ and versions thereof after a Natalie Merchant song. Wasn’t intended to be a long-term nickname, but it’s stuck.

What are you listening to right now?
The background noise is DH’s computer – I think he’s watching an episode of something or other on there. Nothing in my immediate surrounds though.

If you could go anywhere in the world for the next hour, where would you go?
My ‘home’, in California.

Which language do you want to learn?
New Zealand Sign Language.

What do you love most about where you currently live?
The house – That we own (well, with a mortage). So at least I don’t have to panic over yet another spill on the carpet, it’s our own responsibility…
The neighbourhood – That conviences such as bus route and dairy are within easy walking distance.
The city – That virtually everything is here, in one form or another.
The country – The scenery. The people. The mindset. The freedom.

What is your favorite piece of clothing in your own wardrobe?
Probably my velvet tie-die elastic waist skirt, which has fit me in all my fluxuations of weight, and is now around 9 years old. Needs a little mending, but not bad for a 9 year old skirt.

Where do you see yourself in ten years?
Hopefully homeschooling my kids, in a different (slightly bigger) house that we own, and otherwise doing much the same as it is now.

Describe your personal style?
Funky, fashion victim. Possibly towards the hippy-ish.

If you had £100 now, what would you spend it on?
Top up my WoW account, and buy a decent winter coat.

What are you going to do after this?
Go to bed. Or just possibly, read.

What are your favourite films?
Shrek, The Truth About Cats and Dogs, 10 Things I Hate About You

What inspires you?
People, mostly. People that are real and down to earth and still seem to be doing much better than I can manage. People like Kelly, Mama-to-Many, Sarah Bean, and many other “everyday” people that make life a value-add enterprise.

Your favourite books?
All of the Diana Gabaldon books, Time Traveller’s Wife, and a good amount of ‘trashy’ escapism reading at it’s best – mostly stand-alone romance novels or soft crime.

Do you collect anything?
Does yarn count?

What makes you follow a blog?
People that inspire me, as above. People that make me want to be a better person. People with a great voice. People that talk about what I’m interested in, of course – mostly knitting, pets, reading, and life in general. And frequent posting doesn’t hurt. (Yeah, I should follow my own advice here…)

What was the most enjoyable thing you did today?
I designed and sewed a bag to hold the bathroom reading material, in the hopes of stopping K1 from biffing all our books / magazines / newspapers into the toilet. Not to mention keeping things cleaner and neater. Was sewed entirely from stash, in an afternoon, and matches the toilet decor (what there is of it) too.

The rules:1. Respond and rework; answer the questions on your blog, replace one question that you dislike with a question of your invention, add one more question of your own.2. Tag eight other people.

Tagged:
Caity
Cheri
Sarah
Wendy

and anyone else that should feel so inclined…

This is what I don’t understand

While Z2 was a baby, I couldn’t wait for her to grow the heck up already. As she hit each phase I found myself anticipating the next, then worrying over the next, then wishing she’d just hurry up and get older.

With K1 I consciously wanted to enjoy the baby stage, because I love it and realise now just how darn quickly it flashes by. I found myself loving where she currently was developmentally, whilst still mourning the stages she’s already left behind.

Even today, there is a part of me that really misses the little baby K1 was, even while I revel in the delightful one year old she is, especially as she’s at the perfect age where she’s developing independence and yet hasn’t discovered willful defiance yet.

And yet, all it takes is one comment by a mum with a younger child – not a particular mum, just any mum – about all the words their child is saying, or the fact that their son/daughter has been walking since 9 months, or whatever… and I find myself looking at my completely adorable, developmentally normal one-year-old and thinking “why doesn’t she do that yet?”

It is the paradox of motherhood.

A life for sale

This is a theme that seems to be recurring lately.

First there was this guy who sold his entire life on eBay as one giant parcel.

Then there is the plumber that’s selling ‘everything’ to save his business in the recession.

We’ll be next I think, to sell off what might seem like a whole life.

Yes, we really need the money. However, that’s only part of what our circumstances will be about.

We are two adults and two small children living in a two bedroom house.

Yes, we are mildly cramped – but I’m actually surprised at the amount of people who ‘cant’ believe’ that we manage in this house – who think that we need at least one extra bedroom. Sure, one would be nice. But there are many families worldwide who survive with much less room, many less things. Why can’t we?

Neither am I saying that all ’stuff’ is bad – not at all. I like my things – I bought the consumeristic cutlture hook, line, and sinker. I’m merely trying to change away from that brainwashing, free up space, free up time, free up mental hassles – free up life.

I’m not going to be ridiculous and sell things that we clearly use or need on a daily basis. Though in some cases, I may end up redefining ‘need’. But what’s the harm in that? How much stuff, after all, do we really need to live happy and productive lives?

If only it was storming

I’m in the mood for a really impressive thunderstorm.  But I’m not sure why.

I think there’s a part of me that wants to crash about and really have a blow-out – not “at” anyone, not because of anything / anyone – maybe just something to break the monotony.

A thunderstorm would be a really great way to live vicariously.

It’s been dreary here the past couple days.  Not glorious and sunny, not rainy, not windy.  Just overcast, vaguely threatening, and dreary.  Monotonous.  Mundane.

A thunderstorm would be a nice change.

It’s coming into winter here.  New Zealanders – or Aucklanders at least – rarely say it’s autumn.  There’s a spring, but not a fall – it’s just “coming into winter”.  Or “winter is really here now”.  Technically it’s autumn, but that seems to be a no-man’s land.  So instead we protest that it’s winter, it’s far too cold.  Really it’s not, winter is much colder than this.  Winter is far less predictable, and can issue some spectacular storms.  Maybe Aucklanders object to monotony as well.

I like curling up next to a window with an engrossing book and listening to the rain outside.  It’s soothing to hear the storm but be warm and secure at the same time.  Kind of like the cathartic feeling after a huge cry.