Normally I’d do one of those Year in Review type posts but I really can’t be bothered.  As the clock struck midnight going into 2009, my husband and I declared that this new year was going to be “our year”.  We’d already been through so much in 2008 that we were certain 2009 was going to be the one for us.  But it wasn’t.

Now, as everyone is wishing each other a happy new year and best wishes for 2010, I get this terrible sinking feeling.  I know that 2010 is not going to be a good year at all.  While most people stop counting down at midnight, we will continue our own countdown until the baby is born.  I want nothing more than for our doctors to be wrong and for little Nudge to survive but sooner or later I am going to have to face the facts and accept our fate.

2010 is not going to be our year.

I almost forgot…. while I was at the hospital, I asked the doctor to flip back through my file to the 22 Oct which is the day I saw the doctor that gave us the hopeful MRI result (before the report was changed). All I’ve ever requested is that they explain to me why, on the 22 Oct they told us that the MRI showed one good kidney with appropriate structure and a small bladder, only to change that one week later stating NO kidneys or bladder visualised. There’s a huge difference in those two diagnoses. I just want to know how this happened. Either someone did the wrong thing or someone changed the report. I don’t want to sue, I don’t want money. I just want to understand how it happened – I believe I have a right to this information because the change in the report changed the life/death outcome for our baby.

The doctor went right through my patient file and it turns out that the doctor didn’t write any notes at all for that consultation! She gave us a “life and death” diagnosis but didn’t write a single word.

I’m not sure how it works in the rest of the world but in Australia, doctors are required by law to make notes for each contact with the patient. This hospital is dreadful. Even if we make a formal complaint, there’s no proof of what transpired – it’s just our word against hers.

And seeing that the doctor didn’t even bother to update my file that day, it’s like it never happened. The only proof that we were even at the hospital that day is that the high risk preg nurse documented that she took us through the NICU and explained the plan for baby. But there’s nothing from the doctor at all. I just keep hoping that the MRI is wrong, that the radiographer is erring on the side of caution by saying he can’t see anything when maybe there is something there. But it seems that MRI trumps everything else, so all of the previous ultrasound reports we have stating they can see renal arteries, etc are ignored because MRI, the king of diagnostics, has spoken.

Incidentally, the husband found a documented case in Canada where a woman was told that her baby had renal agenesis based on MRI findings. She declined termination, carried the baby to term and that baby was born with two (non-functioning) kidneys and bladder. MRI is not infallible.

I had another appointment at the hospital this morning. I’ve complained about this clinic plenty of times and unfortunately today I can only add to it.  Buckle up, this is going to be a long one!!

My appointment with the midwife was at 8.30am but they told me to be there at 7.30am to do the glucose test.  I stood in the main foyer waiting for them to open until 8am.  A midwife arrived and explained that the admin staff wouldn’t be there until 8.30am but she let myself and three other patients into the waiting room to sit while we waited. I still had to take a frigging number, wait for the admin staff to arrive, then wait to be called to tell the clerks that I was there and then wait again to be seen.  I explained to the clerk that I was told to be there at 7.30am to do the glucose test but the clerk just shrugged at me.  The nurse unit manager (they wear red shirts while the other nurses wear blue) overheard and came back a few minutes later with the glucose drink. I mentioned that been told to fast for the test when it was scheduled but she said that was wrong and that I should’ve eaten breakfast.  Ummm?  I can only do as I’ve been instructed.  She went on to tell me to drink the glucose, and to not eat or drink anything else.  She said I would be seen by the doctor in a minute then she’d do the BSL finger-prick test after that.  Sounds good.

I followed her directions and waited. And waited. Jerks. The nurse manager walked by me half a dozen times and knew damn well that I was still there.  She’d said she would come back to me for the BSL so I just waited for her.  And waited.  By the time the nurse got back to me to do the finger prick test, 2hrs had passed and she flipped into bitch mode by telling me that it was too late to test and wouldn’t be accurate anyway. How is that my fault????? She called over another nurse and told her to do the test, adding that I’d left it too late.  This all went on in a busy corridor with other patients milling around waiting to drop off their wee samples.  Geez, got privacy much??  There was no point in arguing with this bitch, as much as I wanted to tell her that it was HER fault.  And this from a MANAGER.  I still have to go back there for two more months, and unfortunately I need these assholes on my side.  Anyway, the result was normal (4.9) but of course completely meaningless given the amount of time passed since drinking the glucose and the fact that they didn’t take a blood sugar level BEFORE I did the test.  I’d told her I’d fasted, how do they know that I wasn’t hypoglycaemic before having the sugar drink???  Effing idiots.  I have access to a BSL monitor at work, I guess this is something else I will have to monitor myself.

THANK YOU NSW HEALTH FOR YOUR CONTINUED SUBSTANDARD LEVEL OF HEALTH CARE!!!

I really wish a senior health manager would stumble across this blog and DO SOMETHING about it.  Fat chance.  The husband and I are now seriously discussing making a formal complaint about all the problems we’ve had with XXXXX Hospital.  We are lucky that we both work in health and understand how the system works and we both have the initiative and skill set necessary to self-manage our health.  If we were from non-English speaking backgrounds or even of a lower socio-economic status, we’d be fucked.

Eventually I was called in to see the doctor.  At my last appointment I was told that I would be seeing the high-risk pregnancy midwife from then on.  I guess they forgot?  Or is it just another example of the complete lack of continuity of care?  If they just said “you’ll be seeing which ever doctor or midwife happens to pick up your file” I’d be fine – but this place never ever does what they say they will do.  A perfect example is the ultrasound appointment I had on 23 November.  I was told by the doctor that she would do my normal check-up on the same day.  I arrived for that appointment, had the u/s and was told to come back again because they didn’t have my file available and didn’t know I was suppose to have my normal check-up at the same time.

Baby is measuring 28 weeks based on fundus height (I’m now 30 weeks).   She didn’t seem worried but from my notes it means the baby hasn’t grown since 26 weeks.  My bump is bigger and the baby is moving a lot, with those movements getting stronger every week so I *guess* he is just curled up??  I’d never seen this doctor before but she was ok, she read through the notes and asked if it was ok if she grabbed the low-tech u/s machine. I think she was just being curious since you could see the baby moving through my stomach while I was laying there. Anyway, not wanting to miss a chance to see our baby, I agreed. He’s still very breech, facing out with his legs tucked up, feet by his arms and his butt sitting firmly on my bladder. I asked for a photo but the machine was out of paper and she couldn’t find any more – are we surprised??  The husband took a mobile phone pic of the u/s machin instead (he’s so wonderful, he knew right away how important it was to me).

It’s a bit hard to see what’s what but essentially that’s the baby’s head and what we think might be a hand.

And as per always, I had to take another number from the ticket machine and wait to be called to make the follow-up appointment.  They want to see me again in two weeks and although the senior ob told me that they wouldn’t be doing anymore ultrasounds, they have asked me to book for another tertiary ultrasound at 34 weeks.

Following a conversation with my sister over Christmas, I’ve decided to compile a list of the books I read this year so I can try to beat that number for next year. Ah, always in the pursuit of something.

In no particular order-

1. Twilight – Stephenie Meyer
2. New Moon – Stephenie Meyer
3. Eclipse – Stephenie Meyer
4. Breaking Dawn – Stephenie Meyer
5. When you are Engulfed in Flames – David Sedaris
6. Dead until Dark – Charlaine Harris
7. Living Dead in Dallas – Charlaine Harris
8. Club Dead – Charlaine Harris
9. Dead to the World – Charlaine Harris
10. Jitterbug Perfume – Tom Robbins
11. Pillars of the Earth – Ken Follett
12. Prey – Michael Crichton
13. The Ice Station – Matthew Reilly
14. Next – Michael Crichton
15. Pride and Prejudice – Jane Austen
16. Pride and Prejudice and Zombies – Seth Grahame-Smith
17. High Fidelity – Nick Hornby
18. Area 7 – Matthew Reilly (didn’t finish it before midnight 31.12.09)

I’m not counting any of the clinical genetics books that I read recently, or the law texts for uni because I didn’t read them “cover to cover”. And I know that I’m missing one or two books from early in the year but right now I just can’t recall them.

I haven’t written for a while because there hasn’t really been anything to tell.  I’m still pregnant, almost 29 weeks now.  It’s insanely obvious now that I’m pregnant though I don’t think I’m as big as some of the other mums, probably because of the anhydramnios.  Most of the time I’m fine but of late I’m getting so tired by the end of the week.  And when I’m tired, I waddle.  There is absolutely no way to make that look good.

Since my doctors aren’t doing an effing thing for me, about a month or so ago I took the liberty of writing to a professor of nephrology based in England who is actively researching renal agenesis.  After a week or two, he replied with some useful information regarding a couple of syndromes that can cause bilateral renal agenesis.  His information was useful but in truth I’d already discovered it for myself.  My employer gives me full access to databases containing medical journal articles and after some exhaustive searching I found a list of the syndromes linked to BRA.  In the same week, I found the name and contact details for another researcher, this time a molecular biologist based in North America.  I emailed him and he wrote back a day or so later (very impressed!) with the most interesting, frank and useful information that I’ve received from anyone to date.  In short, he is of the opinion that recurrence is likely to be 25% and he has invited us to participate in his research study which will require collection of blood from the husband and I as well as cord blood from Nudge.  My obstetrician has agreed to collect the samples and the researchers will cover the cost of shipping the samples to the US.  I don’t expect anything to come from this but I really need to be doing something positive right now.  I should be nesting, setting up our baby’s nursery and getting ready to bring him home but instead I’m studying genetics.

We are still waiting for the results from the last round of genetic testing that was done in early November.  I phoned the geneticist’s office and asked her secretary if the results were back.  She checked my file and said they were, and said she would keep my file out for the doctor to call me.  That was two weeks ago and I’m still waiting.  I think I’m going to have to use my inside knowledge of the system to get a copy of the results faxed to my office.  I’m really getting tired of having to do everything myself.  Assholes.

Baby is measuring about a week bigger than he should be which is good news as far as I am concerned because it means he is getting plenty of everything he needs to grow.  I’d hate to think that I was starving the poor little guy.  I’m feeling plenty of movement every day though it seems very unlikely that he has turned head down.  At my last visit, the midwife explained what she was feeling for when she poked my belly and the shapes and lumps haven’t changed position since that appointment.  His kleiner kopf * is still behind my belly button, sometimes a bit to the left but mostly to the right – probably because I lay on my right side more often than the left.

My next appointment isn’t until the end of the month and the doctors have decided to do the glucose tolerance test after all.  Originally they said they wouldn’t bother doing any further tests.  I guess that’s one of the things that ticks me off about the obs team I’m seeing; they are never consistent in their treatment or diagnosis with me.  And I still haven’t received an explanation as to how they messed up the diagnosis and MRI findings.  I’m going to ask again when I go back in a couple of weeks.  I think that if I don’t receive a satisfactory explanation before 32 weeks then I will write a formal request to the hospital’s patient liaison.  I’m really sick of the obs treating me like an idiot.

* kleiner kopf = little head

I had another appointment at the hospital today. It was just suppose to be a quick couple of minutes so they could write some instructions in my file (they didn’t have my file available when I was there last week) but it ended up taking closer to 90 minutes because the high risk preg midwife realised that the doctors had been skipping out on a lot of the check-ups (MSU, measurements, etc). She measured my belly and said that I was measuring a smidge bigger (28cm for 26wks) and has scheduled the glucose tolerance test that they previously said they wouldn’t be doing. Over the last six weeks I’ve really felt that the doctors weren’t giving me adequate care and the midwife’s reaction to the gapping holes in my clinical notes validated my concerns. I hadn’t intended to go back at all after today until labour started but this midwife has changed my mind. She is everything I was missing about my previous midwife and best of all, she said I can continue to see her, which is very reassuring.

The only other thing worth mentioning is my issue with waist bands. If I wear anything with a band around the bump, the baby seems to get a bit hostile and kicks furiously at it. I mentioned this to the midwife and she just shrugged and gave me a doubtful look. Then she put the doppler on my bump and as if he was trying to prove that mummy wasn’t nuts after all, Nudge kicked at it about eight times in a row. Her thoughts are that he’s feeling a lot more sensations from outside the womb because of the anhydramnios.

We have a study with a big desk for our computers.  One wall is lined with six foot bookcases filled mostly with my university textbooks and lecture notes.  On top of one of the bookcases is a box with a picture of a teddy bear on the lid.  It holds the few things I have for Max; an album of around 20 photos, a dried white rose from the arrangement my grandmother sent, my hospital ID bands, my antenatal clinic card, the little teddy our neighbour gave me for him after Klaus helped to jump start her daughter’s car, his cot card, the little memory book containing his hand and feet prints and the blue quilt that he was wrapped in until I had to give him back.

It’s now 4am as I sit in that study at one of those computers.  I’m awake because I had that same dream again.  It’s the one where I walk into this room and instead of the bookcases being filled with my uni books and notes, it’s filled with dozens of those memory boxes.