Relief

Just a quick update to say that we’ve had our results back from the hospital and they’ve come back negative for Down’s Syndrome, Edwards and Patau’s. The NIPT test is bloody amazing and of course we’re so relieved.

I don’t think I’ll fully relax until the 20 week scan confirms everything is ok, but I definitely feel more relaxed now than I have done in months.

Maybe I can actually get some sleep now?!

Thank you to everyone who’s contacted me with words of support and encouragement, you’re all awesome and what makes this community is so invaluable to me. 💗

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NIPT

We’ve just come back from our NIPT blood test which is now whizzing it’s way to Cardiff for testing. We should get the results next week all being well, so now all we can do is wait. It’s definitely nerve wracking and I know this next few days of waiting will feel like an eternity but for now we’ve done all we can. So we wait.

Paul and I had a good long chat after the initial shock had worn off, and once we both knew we were on the same page about any future decisions we may have to make I think we both felt a lot better.

The NIPT is 99.9% accurate, so although we may still be offered cvs/amniocentesis if this result also comes back high risk, we agree we would most likely decline it. It’s a very personal choice, but for us the margin of error in the NIPT is so small, and the risk of miscarriage following an amnio is actually greater than the risk of our baby being born with Down’s Syndrome so we feel declining the amnio would be best for us, especially given our history of miscarriage. Ultimately, if the results come back and confirm that our baby is likely to be born with Down’s syndrome it won’t change a thing. We’re still having a baby, we just may need to make plans a little differently is all.

As my mum always says “nothing worth having comes easy”. Boy ain’t that the truth.

Another hurdle

So after having approximately one week of feeling slightly less anxious I got the call everyone dreads yesterday. My results have come back as being high risk for Down’s Syndrome.

I’m glad I had the presence of mind to write things down as I was hearing them, and that the midwife was very patient and happy to repeat things a million times because honestly, I went in to a blind panic. Came off the phone in floods of tears and had a little panic attack. Couldn’t get the words out to tell Paul even which I’m sure was terrifying for him to see me so hysterical and not know what was going on. Thank God I was working from home is all I can say.

Everything was “normal” at our scan, including the NT measurement but something in my bloods has made our risk come out at 1 in 148. Anything below 1 in 150 is considered high risk so I’m only just in the high risk category and trying to take comfort in the fact that the scan was all normal. The midwife was really reassuring and said to try not to worry (easier said than done) as they get a couple of these turn out to be false positives every week. There’s a new non invasive test (called NIPT) available at our NHS hospital that we’re having on Friday, and we’ll get the results a week later with 99% accuracy so we’re just focusing on that for now and trying not to worry about what may or may not happen next. Again, that’s easier said than done. We’re very lucky that this test is available to us though, until recently it was only available privately and cost anything from £400-£900. The midwife said they’d love to just screen everyone with this one test which is far more accurate than the current 12 week screening, but it’s just too expensive to be able to offer to everyone. Just another example of our wonderful NHS having their hands tied due to funding problems.

I didn’t get much sleep last night, and I definitely resemble puffy eyed roadkill this morning so working from home is the order of the day but having had a bit of time to process, research, and talk things through with Paul, and with a friend who’s been through this recently I do feel a little better today.

We’ve gone through so much already, and overcome so much already that this is just the latest hurdle for us to get over. Whatever the outcome we’ll deal with it like we’ve dealt with everything else that’s been thrown our way. I just wish I could fast forward to a week Friday now. The waiting is agonising.

…aaaaand breathe!

Just a quick update to let you all know that everything went well at my appointment and baby G is looking chilled and cosy in there. 13 weeks today and starting to feel slightly more human…although it would be really nice to be able to brush my teeth without provoking a vom!

Anyway, no complaints here, I’m just so happy and relieved that everything is ok. For the first time in months I actually feel like I can stop holding my breath.

Phew.

Tomorrow

Tomorrow is my 12 week scan…I think I’m still pregnant.

I’ve had pretty awful sickness and nausea that’s only now starting to ease off, and I’ve had some pretty painful round ligament pain again which is a good sign – I had it on Arthur and he stayed put the whole 9 months so I’m feeling hopeful.

I’ve been doing ok, trying not to worry or dwell on what may or may not happen tomorrow and for the most part I’ve genuinely been ok but today I’ve felt anxious, headachy and tense all day. I’m expecting an unsettled night and I’m expecting to feel a million times more anxious tomorrow. Turns out that Paul, my Mum and my Dad are all feeling exactly the same way. I hate that we can’t just be excited about seeing our baby, but my first ever ultrasound scan resulted in a missed miscarriage being diagnosed at 12 weeks so how can I ever not feel anxious about scans now?! Our appointment is late in the day too so it means a day of agonising waiting. I just hope we’re seen fairly promptly before my stress levels shoot through the roof!

I really really hope that I get to come home tomorrow evening and start sharing our news with friends and family. 2018 was a tough year for Paul and I, we suffered another loss and a struggle to conceive again following it and honestly, we were pretty glad to see the back of it all so a happy scan tomorrow would be a brilliant start to the new year. Fingers and toes are firmly crossed…

Miscarriage Training Session

So I blogged a while ago about having been contacted by the miscarriage association about helping out with some nhs training at my local hospital and then with all the drama of our threatened miscarriage and now just being in a sort of hopeful limbo until we have the 12 week scan, I kind of forgot to blog about the actual session! So I thought I’d do a little update on how it went.

It was a few weeks ago now, but it was a morning session from 9:30-12:45, and was made up of me talking through both of my miscarriages, the care I received (or didn’t in the case of my first!) and my thoughts on what improvements could be made. There was then a question and answer session where everyone got to ask me whatever they wanted (relating to miscarriage, treatment and care) and I did my best to answer constructively and honestly. The group was made up of obs and Gynae doctors, GP’s, junior doctors, nurses, and med students so we had a good mix of disciplines present.

There was then a set of three scenarios presented to the group, around three patients who were presenting with miscarriage symptoms – each with a different story, and a discussion around how to diagnose and treat each patient. I was surprised to be included in this exercise, but it’s safe to say that they really made the most of having me there and took every opportunity to run ideas past me and query their processes. It was really interesting and I’m glad I was able to be a part of it.

The last section was a presentation from a doctor about genetic testing and “sensitive disposal of remains” which was by far the hardest part of the day for me. I was surprised to hear that there are several options for cremation/burial of miscarried babies no matter what gestational age. All I kept thinking was, I was never offered any of that. I was never even told about it!

I fed back my thoughts on that, and the room took everything I said on board as they had done all day.

One of my biggest bugbears around miscarriage and the aftercare is the frankly offensive terminology that is more often than not used by medical professionals, so that was top of my agenda, and while they all took on board everything I’d said, it was interesting to hear that for most of them their reason for using terms such as “products of conception” or “pregnancy tissue/remains” was because they thought that using the word “baby” would be too upsetting for the patient. I had never thought of it from their point of view before, and although I think they’re wrong (and I told them so- explaining that acknowledging that it was a baby is more comforting than it is upsetting) I can understand now where they’re coming from. They’re not trying to diminish your much loved baby, they’re trying, however misguidedly, to avoid upsetting you further.

Anyway, I could waffle for hours and pick over every little detail, but the overall feedback was positive. Everyone said they’d felt it was really valuable to hear real experiences from a patient’s perspective, and from my end I felt like I’d done something good to hopefully help other couples in future.

I very much look upon this sort of thing as a healing experience. My losses were both very different, but both equally heartbreaking, and to be able to use that experience and turn it in to something positive can only be a good thing.

This session was hopefully the first of many – I’ve offered to come along and help out again any time, and the doctor who organised it seemed keen to plan more of the same (because as it turns out they don’t actually receive any formal training on how to handle miscarriages/aftercare) so fingers crossed this will become a regular thing, and in an ideal world something that other hospitals and health boards also take on board.

A-OK!

Flabbergasted, shocked, ecstatic, thrilled, over the moon….our little bean is perfectly happy wriggling around in there!

I don’t know who was more shocked – us, or the sonographer!

We’d gone in to a very somber atmosphere, all of us convinced we were going to get confirmation that the baby had gone. The sonographer turned the screen to me and started to poke around my belly and as she was doing this I lay there thinking “is that a baby? I’m sure I see arms and legs. No, it can’t be. There was nothing last week.” And then all of a sudden there it was, a beautiful, strong, fast little heart beat! I was sure it was so I asked as much and the response? “It certainly looks like doesn’t it!”

A little bit more poking and prodding and a bit of zooming in and yep, sure enough not only did we have a strong steady heart beat but also wriggly little arms and legs! My dates were pretty much spot on, so the fact that last week all we could see was a yolk sac had everyone amazed at the turnaround. By all accounts it’s pretty rare to get this outcome based on what was observed last week so it was happy tears and hugs all around. Obviously it’s still early days, and they did heavily caveat the good news with no promise that things can’t still go wrong further down the line but for right now everything is as it should be and bubba seems happy and healthy and feisty! We’ve got a little fighter on our hands.

Keep fighting little bean!