Up and Down again; feeling numb

Hugs

[clothmama]

Wow that is pretty full on I'm nto surprised you are feeling shocked and overwhelmed, anyone would do

I have again seen the foetal neurologist (seen previously for cyst, which had almost resolved), who has recommended amniocentesis (both for the chromosomal PCR and for culture), bloods for the viruses and an in utero MRI.
I will be almost 34 weeks by the time they do an amnio, so risk of pre-term labour (which I was already at risk of anyway) so I have been started on steroid injections to mature his lungs as too many risks now involved. The amnio is booked for next Monday, and results (including the DS test) will take a fortnight. I should have the MRI within the next 2 weeks.
I have been asked to go home and write down any birth choices I want considered, but to be aware of complications etc.
I'm shocked and shaken all over again, and back to playing the waiting game.

I'm very surprised that the amnio results should take that long to come back what a shame I had the non-envasive blood test (I chose to go that route rather than have an amnio, but there was only a DS concern, they weren't worried about the other stuff that they will be looking at with you ) sent to the states and had the results back quicker than that.
Outcomes for 34 weekers are very good especially if you have had the steriods. At least if they do all the tests they can test for infections etc and have a clear idea of what is going on with your little guy to have a plan in place. Make sure you write down any questions and talk to someone who is caring for you so that you feel like you know what is going on. When is your next appointment @cuppachaplz ?

Sending massive , my thoughts are with you

@Sunset and @littlesez , the amnio now is for 2 reasons; the lesion is indicative of considerably more sinister chromosome abnormalities than Downs, which would likely require more immediate care at birth and thus might influence birth choices / indicate who/what to have on hand etc. The second is to try to culture more obscure viruses, some of which I believe (maybe this is research I've read rather than NHS though?) can be treated or controlled by in utero interferon?

When I initially declined amnio, the bloods were only indicative of a DS risk, rather than anything else, and given that neither DS nor I were bothered by this possibility, and I was not prepared to accept the risk of another MC.
The risk now is of pre term labour, and as you say @clothmama, the prognosis is increasingly good at and after 34 weeks, so for me the risk/benefits have changed slightly in that in my mind the risk is now less (esp given that I was at risk of pre-term labour anyway, apparently they were waiting for sepsis to be controlled enough for me to cope with steroid without relapse), and the results may actually change what is done at and just after the birth. Fir example, I can see medical benefits to knowing in advance if the baby is likely to be born experiencing cluster seizures, and can see why staff would appreciate this knowledge too.

I have had bloods done too, but they would be tested for specific antibodies. I have personally set up cultures with unexpected results, and I guess that I am now entering the weird and obscure range. The other option for chromosomal problems is a blood test on the bay when born, potentially more distressing given the volume required, and still with a turnaround time of up to 2 weeks.

@clothmama, I think the 2 week turnaround I have been quoted is worst case, or time until final report. Previously I was told interim in 3 days then final report in 2 weeks. They have also said that the later the gestation, the slower growing the cells, so the longer it takes to yield enough DNA to PCR. I'm working on them having given me a worst case result, as every other result I have had has been far quicker than quoted.

Having thought about things a little more calmly, I have realised that one of the reasons that consultant was keen to book amnio asap was due to timing, as she said it becomes less vital if we are not expecting the results back until after baby born. From this I assume tat she was either not expecting me to make it past 36 weeks, or had plans to consider delivering then anyway. She didn't really discuss that far ahead today. Kind of grateful for that really

Given the development of an incisional hernia from previous section in the rectus muscle, they are now keeping a very close eye on my scar. I guess on top of sepsis, if the contents of my uterus including a potentially exotic virus are likely to be spilled through my abdomen anytime soon, I'd probably rather know about it.

All in all, thanks for the kind words everyone. I have calmed down quite a bit, had a good think, had huge DH hugs and a large hot choc with extra cream and eaten tea for the first time in a fortnight (steroids, on the mend finally, whatever, feels good ) so whilst obviously not happy, I have at least had the chance to gain perspective, and make plans. Getting there slowly, and today I am pregnant, and nothing bad has actually happened yet...

[clothmama]

I have calmed down quite a bit, had a good think, had huge DH hugs and a large hot choc with extra cream and eaten tea for the first time in a fortnight (steroids, on the mend finally, whatever, feels good ) so whilst obviously not happy, I have at least had the chance to gain perspective, and make plans. Getting there slowly, and today I am pregnant, and nothing bad has actually happened yet...

I think that sounds like a great evening and fantastic headspace! I'm so glad you are able to eat again It also sounds like you totally get what is going on and that they have done a great job explaining it all.

think the 2 week turnaround I have been quoted is worst case, or time until final report. Previously I was told interim in 3 days then final report in 2 weeks. They have also said that the later the gestation, the slower growing the cells, so the longer it takes to yield enough DNA to PCR. I'm working on them having given me a worst case result, as every other result I have had has been far quicker than quoted.

That all makes sense, hopefully the interim will come through quickly and you'll know more before the end of next week

I hope you have a good nights sleep

Ah, I see why they would rather be prepared. Such a lot for you to take in but good to hear you're feeling a little calmer about it all.

Thanks again everyone.

Had a bit of a and moment last night, when I accidentally posted a message to a friend about tiny baby clothes as my status I have had so many problems since so early on, that not 'out' on FB, as I would rather not have to un-tell people if anything went wrong, and things have continued to go wrong at every stage. Thnakfully, someone commented in about 5 seconds flat, so I think that I had it deleted in time, and was able to send a few explanatory messages to her. Avtual upshot, she still had some baby grows from her 2 pre-eclamsia 36 seekers which she is going to post, so maybe a bit of a result

Sorry about this post, but it has literally been one thing ager another over the last few months...
It sounds horrible, but I ma actually starting to think that maybe a early (not too early mind ) baby might not be a bad thing as I don't think my mid or body can take much more of this, and a cuddle off my little man (I will stay positive, I will stay positive, I will stay positive) would really be the very best medicine
In the meantime, copious cups of tea will have to suffice (why only coffee smilies???)

@clothmama, I have to go back for a second steroid injection today, but think this is an in an out with the MW (although probably they will temp and BP check and urinalysis as this seems to be a daily thing following sepsis). The amnio and is scheduled for Monday, with my consultant, so I will have a chance to discuss then also, and DH has planned to take the day off (assuming his work are OK with this, after all the other days recently) and come with me, if not my Aunt can be there, so well supported. The neurologist I saw was lovely; I had seen him previously when the first cyst was discovered. He has explained various causes in quite some detail, and reasons why knowing why at this stage is important. He has also stated that whilst rare, sometime these things can be assymptomatic (but not always, hence need for MRI) and can sometimes remain so, or spontaneously resolve. He has also said that while they can be seen as lone entities, not always, again, hence the need for further imaging. He has said that he will be following me and baby cup for quite some time. I think he is keen to do so, as he knows of my background so is feels that I am less likely to be lost to follow up than many cases...

@Sunset, I have a medical background and quite a varied career, so following him was OK. I think my consultant finds me quite hard work though, given the depth of question I was asking in some areas yesterday I was just feeling totally numb to yet another problem, all of which seem to be totally unrelated.
One thing is for certain, this little man is a proper fighter! Long may that last

Lots of hugs

plus tea and cake

It sounds like you and your little man are being very well cared for and they are making sure they are prepared to deal with any eventuality. The neurologist sounds great and I bet they would rather you asked all the questions in the world so that you have confidence in what they are recommending.

FC today's check up shows you are continuing to recover from the sepsis.

One thing is for certain, this little man is a proper fighter! Long may that last

Absolutely

Thinking of you, what a lot going on. It sounds like your attitude is great though and I think having the medical knowledge does help. I hope you continue to feel physically better, and as others have said its great you've got to this stage of pregnancy where the complications of prematurity are lower All the best!

Just got back,

had a trace as reduced movements (side effect of steroids, had been pre-warned), which was fine

asked the foetal medicine midwife, who I have been seeing throughout about pre-term labour, in terms of what to expect. She has explained how quick it can be when LO is small, so to have a very low tolerance for coming in. She discussed what I would be allowed to use in terms of moving around, the pool(not until at least 36 weeks, but maybe after that with continuous telemetry monitoring), ball, TENS, moving etc and at which gestation. This is assuming that they allow me to labour. She has also assured me that I will very likely be allowed to labour rather than CS so long as the baby is fine. In fact once labour is establish, a teeny baby likely to make an appearance far quicker that way anyway. I will be given a tour of the neonatal unit next week, so I know what to expect.
She confirmed what I was already expecting; that even without this, my consultant was not expecting me to go to term anyway. With the hernia, I will likely be offered an ELCS at 36 weeks anyway...

We also discussed feeding and milk collection. She has advised against any early expression even after 36 weeks in my case due to risk of this inducing labour, but has suggested that should I be leaking that I use collection cups and freeze the milk/cholostrum. I was leaking loads before the sepsis, but suffered boob shrinkage with the profound weight loss, so this has stopped. I will invest in some of these cups anyway, and start stuffing myself with cakes

My most recent urinalysis showed no significant growth, my Iron levels and RBC are fine, and white cell count almost back down to normal; all good for sepsis resolving
I will keep taking the antibiotics, and am well enough to book for flu and whooping cough vaccinations next week

Feeling a lot more positive having talked everything through in terms of risks and what to expect. With regards to tests and possible underlying causes, I can only take a what will be will be attitude and play the waiting game. Until told otherwise, i am working on the assumption that all is well.

Thanks once again for all the kind words, advice and much needed support.
Today I am but getting prepared for and meeting whenever that might be