This is what my husband brought home for me today.  He said it was just because he loves me and he wanted to bring me some joy in a week that has been so horrible for us.  I love you Klaus xx

So umm… remember everything I’ve told you to date about the doctors telling us that our baby had appropriate organ structure but slim chance of survival, tours of the NICU, etc? Scrap that.

I got a call from the hospital late yesterday – it was the high risk preg coordinator calling me to say that my husband and I need to come in first thing tomorrow (today). Umm, why? She couldn’t say exactly, only that the final MRI report was in and the doctors need to talk to us about it. I automatically thought the worst, as you do, but given my husband’s work situation at the moment (he was scheduled to make a presentation of the project he’s been doing for the last two years at a major govt conference), we can’t just drop everything and choof off to the effing hospital for the 5th time in less than three weeks. But anyway… she wouldn’t take no for an answer and wouldn’t give me any additional info. I used my inside knowledge of the hospital system to get a copy of the MRI report faxed to my office and guess what? The report states that no kidneys or bladder were visualised. WTeffin’F?? My poor wonderful long suffering husband really had no choice but to bail on the conference which is so disappointing and also a great way to piss off his managers, right when they’re talking about offering him a permanent position (he’s on secondment) but what else can we do?

The appointment is for 9am (it’s 7am now) and I can’t wait to see how the asshats handle this major stuff up. I’m so angry now that I can’t force my mind to even think about what this means for our baby. This is the second time it has happened and it is 100% fatal. Is every baby we conceive going to have this birth defect?? Too angry to think about it. I think I might have a hulk-smash moment in the ob’s office this morning. Look for me on the news!

Ugh.

We had to go back to the hospital today for the MRI. It took over an hour for the procedure to be done, and I have to say that I quite enjoyed laying in there. It was fantastic being away from people, ringing phones and the rest of the world. There was nothing to do except lay there comfortably (I was propped into position with pillows and foam wedges then covered in a warm blanket) and nothing to think about but breathing. I had to do a lot of breath-holding while they took images of the baby’s kidneys and bladder, and the baby had been pretty quiet and still all day up until that point. Then every time I had to hold my breathe and be very still, he would start squirming. Little bugger.

I asked what the radiologist could see and she quickly informed me that she can’t tell me anything and that the report will be ready in a week. The doctor had given me a note to give to the radiologist which basically asked that they inform the obstetricians when the MRI was done so they could go to the MRI unit to view the images but the radiologist took one look at it and said “Oh we don’t do that.”

Could you be any less frickin’ helpful??

We had an appointment for 11am at the hospital’s antenatal clinic and arrived around 15 minutes early. Even though I had an appointment, the clinic uses a stupid effing ticket machine which is the only way to get to the reception desk to tell them you’ve arrived. At 11.25am, the ticket machine called our number and the receptionist put a tick next to my name on her list and told us to sit down and wait to be called. At 1.00pm, the nurse called my name and we were told to wait for the doctor in one of the clinic rooms. At 1.30pm she came in and flicked through some paper work, and told us that they don’t like to see pregnancies with low fluid. She took my blood pressure (100/60), then checked the baby’s heart on a mobile u/s machine (the rate wasn’t measured, just the heart was visualised which was a bit pointless as far as I can tell). I asked if she thought the fluid level had changed but she didn’t, so much for drinking all that water. She told me that she didn’t think maternal dehydration or saturation would make any difference and pointed out that babies born during famines aren’t affected by maternal dehydration. I guess she hasn’t read any of the articles supporting maternal saturation for oligohydramnios that we found in dozens of medical journals. She asked when I was booked to have the MRI (Monday) and then told us to come back next Thursday but pointed out that the MRI report may not be ready by then. Great!   We then had to take another effing number and wait to be called just to make the next appointment.  It was 2.30pm when we crossed the hospital courtyard on the way back to the carpark.  The consultation took a total of 15 minutes but because of the poor level of organisation at this particular hospital, we had to take the entire day off from work. That’s the thing that really pisses me off in all of this: the big waste of time. She could’ve just asked me about the effing MRI on the phone yesterday, because checking my blood pressure and visualising the baby’s heart could have waited.

So… I’m stuck in a shit hospital where no one knows anything except what is happening to us is not good. The husband has been hammering away on the various journal databases all afternoon and has come to the same realisation that I came to on Monday night; there is no evidence to suggest that a baby will survive oligohydramnios in the second trimester. Late term, yes but not from this early on.

Why does this keep happening to us??

We’ve reached the 19th week of this pregnancy now and I’m starting to feel pregnant.  I’ve had a few flutters and the odd poke/kick which has been very nice, and the nausea is gone but I’m still very tired.  We were scheduled to have the morphology scan on Monday and I was feeling very nervous, excited and worried but I’d decided to do my best to put all of those concerns out of my head.  I thought it would be best just to go in with the expectation that everything was going to perfect, but I was wrong.  I’m here to tell you now that you should always listen to your gut!!

Right away, the sonographer told us that there wasn’t enough fluid around the baby.  This is how things started last time.  A doctor quickly joined us, and then some others until the room was so full they had to move bins and chairs into the hallway to make room for everyone.  The doctors wanted to know if I might be leaking fluid and I really don’t think I am.  The problem now is that either the baby isn’t creating enough fluid or I’m losing the fluid without noticing.  They took lots of measurements and among so many other things, noted that the baby’s nuchal fold was quite large indicating Down’s Syndrome.  Nothing was really said to us directly but eventually they decided that it was likely that our baby has a chromosome problem.

We’d been labelled high risk for trisomy 13 at the NT Plus scan so we’d already prepared ourselves for the possibility of further invasive testing.  Within minutes I’d signed the consent form and my belly was covered in Betadine.  They couldn’t do an amniocentesis because of the low fluid levels so they took a CVS instead.  I have to say that even with the local, it hurt like an effing bitch.  My wonderful husband sat beside me, watching the ultrasound image of the needle poking into the placenta on the big screen on the wall while I concentrated on laying very still and keeping my eyes firmly shut.  It was over in a few minutes.  The doctors have transferred my care from my preferred little hospital to their own massive tertiary hospital, and I am now officially high risk.

We left the hospital and before we reached the car park, I burst into tears.  I just couldn’t believe we were going through this all over again.  We went home, phoned our family and had a big cry.

The next couple of days were spent worrying, googling, and trying to work on our game plan.  It’s nearly impossible to decide what to do when nothing definitive has been said.  All we know is that there is a problem with the baby, and that problem is potentially a very serious chromosome defect or at the very least, a low fluid problem.  We’ve decided that the low fluid problem might be something we can work on but if the baby has trisomy 13 or 18 (in addition to the low fluid), it’s going to be more humane to interrupt the pregnancy.  It’s a very tough decision to make but we can’t see another way around it.

Finally this afternoon the doctor called me to say that she had the initial results from the CVS.  Our baby has perfectly normal chromosomes and is a BOY!  But we still have the low fluid issue to figure out and she wants us back at the hospital tomorrow to discuss it.

Incidentally I found an article from the NHS about low fluid pregnancies and there is evidence that maternal dehydration can affect amniotic fluid levels.  I drank 3L of water today – it couldn’t hurt to try!