I went back to the hospital on Tuesday for a check up.  Every is ok; fundus height is 31cm, blood pressure is fine, baby is moving about and his heart rate was good.  I saw both the midwife and the obstetrician, and they want me back next week for another check up and ultrasound.  They poked and prodded a lot but couldn’t tell which way Nudge was pointing.  If he’s breech on ultrasound then the midwife said she’d run me through the nuts and bolts of a breech labour.

I bought the fabric for Nudge’s burial gown on Saturday and am trying to get my shit together enough to start sewing.  It’s harder than you could imagine.  I also contacted the funeral home and have sorted out some of the finer details for his funeral.  We can’t do anymore until we buy our burial plots, but the husband has just started a new job and it’s virtually impossible for him to get any time off right now to go and look at patches of ground.  We’re not even sure if he’ll be able to leave early next week to come to the hospital for the ultrasound. 

Tonight I’m trying very hard to ignore some fairly full-on low cramps.  I’ve done a stack of googling and it seems that the pains are just more Braxton Hicks contractions.  The husband keeps looking over at me with this very worried look on his face.  Poor love.  Neither of us want this to be over yet.

I should be planning Max’s first birthday party or picking out a stroller for Nicholas but instead I’m planning a funeral and picking out a burial gown.

I was back at the awesome hospital today for my 33wk check-up with the midwife. I can’t describe just how fantastic this midwife is; she’s the Mary Poppins of midwives - “Perfectly perfect in everyway”. She’s like hot cocoa, sunny days, freshly baked bread, fluffy towels straight from the dryer and every other wonderfully awesome thing you could name all rolled into a warm smiling package.  She checked Nudge’s heart rate (130bpm), and my blood pressure (100/60) and then measured the fundus height which was 30cm.  She was happy with this measurement given the no-fluid thing and thinks Nudge is doing very well all things considered. I’ve been concerned that Nudge wasn’t going to turn, and while I can deal with the possibility of a breech birth, I really *really* do not want him to stay transverse. The midwife did some poking and prodding, and is certain that Nudge has turned most of the way head down. She did say that he could still do a few 360s before his birthday but for now I’m ever so pleased that he’s turned. We talked about my birth plan and she documented my wishes and assured me that the hospital would support everything I’ve requested.  She was of the opinion that everything in my plan was what they would do normally anyway… such a far cry from Westmead Hospital!

She had some time to spare, so she did a little private tour of the delivery suite. I have to say that I am so impressed with the resources available. Each suite is fitted out with these nifty high-tech delivery beds with push bars and so on, there’s birthing stools, birthing balls, bean bags, huge ensuites with a shower and bath as well as a big inflatable birthing pool. There was also a kitchen available for dad to get coffee/tea, ice for mum, etc - they even had a vending machine full of frozen Lean Cuisines and a microwave!

Along the walls of the delivery suite were lots of gold and silver stars, each with the birthdates and names of all the babies born there. The baby stars are part of a program to raise money for sick and premature babies and it was so lovely to walk down the hall past so many names. Our little guy is definitely going to have a star!

Over the last couple of days, little Nudgie has been doing his best to turn around. I was certain that I couldn’t feel his head above my navel anymore and thought he might’ve worked himself into a transverse position. This was confirmed on ultrasound yesterday. Then last night, he was so active I thought he might’ve been rearranging furniture or something! He was definitely head up again during the day but when I woke from my nap this afternoon, he was on the move again. Tonight I’m getting a lot of low kicks and I can’t feel his head up high at all. I’m hoping he’s settling into a head down position, probably with his feet tucked up. I would LOVE to have a little low-tech ultrasound machine at home!!

We had an excellent run to the hospital this morning; it took only 40 minutes to get there. We met with the high risk pregnancy midwife again and she ran us through the plan for the day and went over a couple of questions we had. The geneticist met with us at 11am and he went through our medical history, created a family pedigree and discussed the plan for Nudge. He seemed a little baffled when we said our previous geneticist had ordered subtelomeric testing and he requested our consent to contact her regarding this and to get copies of results of all previous testing. Of course we gave our consent and I will be interested to know if anything comes from this, especially as we haven’t been given those results yet. The best part of all is that he already knew about the recent discovery of the involvement of the RET gene in bilateral renal agenesis (this is the information I received directly from the lead researcher in the UK), and he recommended that we test Nudge for a mutation on the RET gene. This made me so happy, I cannot describe just how thrilled I am to have such a proactive team of doctors looking after us.

The midwife popped in to check on us then arranged to have a neonatal intensivist speak to us. This doctor was lovely but I was much too upset to speak to him and I am so grateful for the husband because he took everything in hand. He said all the right things and asked the right questions but they were all things I had no idea about. One thing that he was definite about was his request that if Nudge is born living then we want him supported to allow for baptism and family members to arrive to the hospital. I didn’t realise this was an option for us but the intensivist was wonderful and wrote up the order in our patient file to ensure Nudge will be given oxygen and whatever else might be necessary. Given the severity of the prognosis we have formally declined any intervention that will cause him pain and request that he just be kept warm and comfortable. The intensivist was happy to arrange these things for us.

The midwife found us again and arranged for the social worker to meet with us. She was a lovely older woman and we had a brief chat about our situation and our wishes. She said that there is a nursery that we’ll be given access to that has been designed for parents in our situation. We’ve requested baptism and the social worker has promised to arrange for the hospital’s chaplain to contact us in the coming weeks.

I am so glad that I pushed to transfer our care to this hospital. Our previous hospital haven’t done anything like this; when they changed the diagnosis, we fell between the cracks. The husband is very keen to lodge a formal complaint and while I agree that there are more than sufficient grounds to do so, I just don’t have the energy right now. If our case had been handled differently, I doubt I would have agreed to interrupt the pregnancy and the end result would still be the same. What’s the point of expending energy on a complaint when I can barely lift my head by the end of the day?

I’m starting to get a lot of hits on my website from people looking for information on bilateral renal agenesis.  If you are a parent or family member of a baby diagnosed with bilateral renal agenesis (Potter’s Syndrome) then I strongly urge you to also visit this website.  Dr Brophy and Dr Clarke are currently accepting families into their research study.  It won’t cost you a cent to participate and they only need blood samples.  Don’t worry if you don’t live in North America as they have enrolled families from around the world in the study and will give you a Fed-Ex account number to ship your samples to their lab.  Their research study is currently the only study being done into bilateral renal agenesis.

It took almost an hour to get to this hospital but it was definitely worth the trip.  We were greeted by the high risk pregnancy nurse manager who went through our history and we talked about some of the ideas we’ve had regarding possible interventions for Nudge.  She was great; almost like a warm hug on legs.  She knew what she was talking about and she listened when we needed her to listen.  After thirty minutes or so, she took us to the obstetrician’s consulting room where she spent the next three hours with us - there were no junior doctors and no nobody whispering amongst themselves.  She was very professional, and everything she said was clinical and scientific but followed immediately by the plain English version.  When she spoke to us, she really did speak to us and without any condescension at all.  That was the one thing that I was so sick of with XXXXX Hospital - the doctors were always making flippant remarks or talked down to me.  Very unprofessional!

I asked about fetal hiccups and it turns out that fetal hiccups have nothing to do with fluid going into the baby’s lungs or stomach.  She said she has seen babies without stomachs having the hiccups!  Apparently fetal hiccups are controlled by the brain/central nervous system and are an indication that the baby’s CNS is working.

I’d made a copy of all of the investigations to date but she declined to look at them until she, and I quote, “meet Nudge myself”.  She did an ultrasound and I was floored by the detail in it!  Her machine must be so much newer then the ones we’ve had access to so far because the images were very sharp, even without the fluid.  She also did a 3D ultrasound as the detail is slightly better and without any amniotic fluid, it wasn’t easy to see everything.  So, she met Nudge herself and took every possible measurement – this was the first time anyone had even bothered to do an AFI (amnio fluid index - it was 0).  She watched his movements and paid careful attention to his limbs (size and movement) as she explained the presence of contractures or talipes can also be a good indicator of poor lung development (ie: clubbed feet at this point would indicate a long time without sufficient fluid, therefore she would expect poor lung dev too).  Nudge was hiding his face behind a mess of hands and feet, and was refusing to show her them in detail but based on the movement, she felt clubbing wasn’t an issue at this point.  She checked so many things and spent a good amount of time going over every inch of him.

Unfortunately her findings were consistent with the MRI.  She couldn’t see kidneys or kidney tissue, bladder or renal arteries.  His right lung was 14mm in diametre which is below the 5th percentile.  The left lung was only 5mm in diametre which is so small it didn’t register on the percentile chart at all.  Even if it was possible to do something about his renal system, his lungs are so hard and small that she doesn’t believe it will be possible to ventilate him at all.  BUT… to be completely certain she is getting us back tomorrow to see a neonatologist as well as a geneticist and a social worker.  I doubt the neonatologist will say anything different but it’s great that she has the whole team involved in our care and isn’t leaving anything to chance.  Finally she recommended that we have another CVS done to create a cell line so when we know what we want to test for (following postmortem), we’ll have sufficient genetic material to do it.  Although the procedure is very unpleasant (19g needle through your abdomen with a local that doesn’t go deep enough to numb your uterus, ouch!), I was very happy to have this done because of the problems we had with Max’s contaminated samples.  I’m really glad that this doctor is taking our history into account, as well as looking forward in as far as helping to do whatever possible to avoid another renal agenesis baby in the future.

Although we live a long way out of this hospital’s catchment area, the obstetrician has agreed to deliver Nudge and therefore has transferred all of my care to this hospital.  I cannot describe just how happy we are with this doctor and her team.  While the prognosis is very bad, the high risk team have been great as far as promising to do whatever possible to create a positive birth experience and to give us as much time with Nudge as possible.  And that’s exactly what we need.  So all in all, it’s not good news but it’s so much better than it would have been had we still been stuck at the dodgy hospital.  And while we’re devastated, we’re also feeling very peaceful tonight.

Random factoid:  The hospital where I was born, and the hospital where the husband was born were merged and relocated to form the hospital where Nudge will be born!  I think the planets must’ve been aligned when we read that article over the weekend!

I saw an article in one of the major newspapers this week that talked about a case where a baby was born with insufficient lung development, (but not renal agenesis) and how the doctors aggressively treated the baby using artificial surfactant etc.  The baby survived.  I know very little about the hospital involved but I phoned their antenatal clinic today and after being bounced around a few times, I eventually spoke to the Clinical Nurse Consultant in the Feto-Maternal Unit.  After patiently listening to my story, she agreed that I should at least have a second opinion and she was able to offer me an appointment TOMORROW!

I’m not expecting much of anything to come from it but it’s got to be better than the hospital I’ve been attending.

Side note:  Based on the reading I’ve done, fetal hiccups are caused by the baby breathing or drinking the amniotic fluid therefore Nudge shouldn’t get the hiccups.  However, I regularly feel what seems to me to be hiccups. It’s like he’s tapping out a steady soft beat and it is constant for five minutes or more.  It doesn’t feel like normal movement because the beat doesn’t move around and it’s quite gentle.  I don’t think he could steadily tap his foot for that length of time but how could it be hiccups if he has no fluid or lung development?

We drove up to the Central Coast yesterday to have lunch with my dad and his partner. They asked about the baby and we tried to explain everything that has been happening. They were both horrified by the treatment we’ve received, particularly with the changing of the MRI report. My dad’s girlfriend was great about it all and said that in light of all the grey areas, as far as she is concerned, everything is normal until the baby is born and something definite is determined. Her own sister is very sick with a fairly rare and mostly untreatable illness, and she manages most of her sister’s healthcare so she was able to understand what we’ve been dealing with from all of our different specialists. I asked if she and dad wanted to see Nudge once he is born and they were very emphatic that they want to be kept in the loop and would love the opportunity to hold him, whether he makes it or not. That meant a lot to me; my dad came to the hospital after Max was born and he held him for a couple of hours with us. I’m glad that he will get to meet another grandson too. So that’s all of my family asked and everyone wants the chance to meet him. The husband hasn’t asked his family, I’m not sure that they will want to see Nudge at all but maybe they will surprise me?

I’m home from work at the moment and these idle hands are restless. It’s too hot to knit and I have no one to knit for anyway. I can’t do any nesting but did manage to finish painting the safari design onto the wooden T-O-Y-B-O-X letters for the baby’s toybox (it was the toybox my brother, sister and I had as kids). I just need something to do besides thinking and distressing about our situation. I’ve been collecting medical journal articles that I can use to convince our doctors to do something more. I really feel that our doctors have given up on us, that it’s just all too hard for them. They could have been doing amnio-infusions right from the start which would’ve helped our baby’s lungs to develop. That’s the first and biggest hurdle - if there’s no lung development they won’t be able to ventilate him. And I’ve found so much literature on peri-dialysis in neonates, and plenty of successful case studies of renal transplants in children under 4yrs. And there are hundreds of thousands of people living with artificial bladders (either internal or external). There’s even been successful transplant of artificially-grown bladders in the US over the last 3 years.

OK, granted it’s a horrible start for any child but I’m just finding it very difficult to just sit and do nothing. It’s made worse by the recent news here of the successful separation of conjoined twins. Not to belittle the good work done for those girls by all involved, but I really feel that it’s a sad state of affairs that they can get better access to health care than me. I can’t even get my geneticist to give us the results of the tests done two months ago!

Our plan for the coming weeks is to get back to the GP and ask her to repeat the glucose test (although this might be pointless if the baby has stopped growing, based on fundus measurements taken at 26 and 30wks) and to book in to see the geneticist so that she might be good enough to give us the effing subtelomeric test results from 2 November. Hmph!

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.