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Original poster

The rainbow cave - where we can remember our angels and pray for our rainbow.

510 replies

3littlebadgers · 20/01/2016 07:30

Hello ladies, the other thread was full, so welcome to the rainbow cave. A place where we can hide away together as we remember our beautiful angel babies, and pray for our tiny rainbows.

Introducing myself and my babies for anyone new,

Name: 3littlebadgers
Angel: DD2, Azra stillborn at 40+5 March 2015
Rainbow: badger boy currently 36+1
Other DCs: ds1, ds2, dd1

OP posts:
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5
KittyandTeal · 17/02/2016 12:50

Argh! I've just had a call from our lovely screening midwife as a warning.

I've got my NHS combined on weds and she called to say whatever the result, low or high risk, I will be sent a letter afterwards saying 'screen positive for T18' then giving the 1:?????? risk. Even if it's low risk! Basically they give me a letter with a positive screen for Edwards because dd2 had it.

Wtaf? I've said I don't want that letter so she will call and give me the result verbally then talk me through it. I am not having a letter in my notes saying screen positive for T18!

I am possibly being unreasonable but I'm raging at the insensitivity of it! I don't understand why that needs reporting. Thank god for awesome screening midwives and clinical staff!

hopinghopefullyagain · 17/02/2016 14:07

Are you kidding? Well obviously not but ... seriously? One child having t18 has no bearing on another having it so why would they do that? I'm no help at all but I've never heard anything so ridiculous in my life! What did the midwife think about it?

hopinghopefullyagain · 17/02/2016 14:09

I could (sort of) understand them saying it would automatically say high risk but if the number is eg 1 in 20 million why would it say positive? It makes no sense. Because this isn't already hard enough! Ffs!

KittyandTeal · 17/02/2016 14:20

I know. She couldn't really explain it, she just said that's how the lab report it (I originally asked for hormone results but no risk factors to be attached)

The thing is the letter doesn't even give you a risk for t13 or t18 so basically the letter will say 'positive screen T18, risk factor for t21 as follows'

It's only done for women who have had a baby with a trisomy too.

Starting to wish I'd not gone for the combined screen.

I need my harmony results before this fiasco happens

hopinghopefullyagain · 17/02/2016 14:26

Logistically can you put off getting the results until you have had the harmony results? It's no help to you but it's making me question having the screen done at all. I need to find out if all labs report in the same way

KittyandTeal · 17/02/2016 14:31

Yeah I'm seeing the screening midwife and I think I'll ask her to keep the results until I call her with my harmony results. My scan will be 9 days after my harmony bloods were taken so I'm hopeful that the results will be back by then.

However, I'm guessing there is a possibility she won't be allowed to hold the results and will have to report them to me.

I would definitely ask if I were you. It's probably different everywhere (I know some report all three trisomy risk whereas my trust doesn't unless it's high risk)

hopinghopefullyagain · 17/02/2016 14:40

Our trust has only very recently begun to screen for all 3, in my last pregnancy it was just t21. I've asked the most knowledgeable person on the trisomy Facebook group that I'm on (without mentioning you) and she has never heard of it either. It sounds like it really is just about a very poor method of lab reporting rather than there being any genuine science behind it. Something else for us to get wound up about

KittyandTeal · 17/02/2016 14:50

Yeah there is absolutely no science behind it. Otherwise the harmony would be effected by dd2s DNA.

I imagine it's something to do with getting the results fast tracked (apparently a history means you get 48 hour results) but totally insensitive and ridiculous.

The screening MW even said the 'screen positive' bit doesn't even relate to the actual risk factor results.

I'm actually tempted to write to pals about it and point out how insensitive it is. If it wasn't for the screening MW calling and warning me I'd be getting a letter next Friday saying 'screen positive T18'

hopinghopefullyagain · 17/02/2016 14:57

I really think you should. It won't change anything for you but might avoid someone else getting an unecessary shock in the post. It doesn't bear thinking about

KittyandTeal · 20/02/2016 14:31

I'm struggling today.

I've spent the morning in tears. I'm so, so nervous about my results but can't pluck up the courage to call the fmc, as long as I don't know there's a chance it's all ok.

My dd1 is being really tough atm and I'm really stressed. I feel guilty that I should be enjoying her while it's just us but I can't.

I have this creeping feeling that this baby is a baby that shouldn't be here, if things had been ok with dd2 this baby wouldn't be here. I can't explain it properly.

That and I just don't think I can do the stress of it all anymore. It's so draining worrying all the time.

hopinghopefullyagain · 20/02/2016 14:42

Hello you, I picked up my phone to post and there you were. Of course you are terrified of the results, what you are feeling is human nature and absolutely to be expected in the circumstances. I know what you mean about this baby not being supposed to be here, I've felt it too. It's all a response to the worry about getting the results. I'm so so sick of worrying and thinking and would just like something to be straight forward for once. What are the practicalities - when and how do you get them?

KittyandTeal · 20/02/2016 14:46

Ah hopefully, it's shit were both feeling like this but just hearing someone else say they get it helps right now :)

Practicalities atm are I call on Monday hoping hey have results for me. They call if they get high risk or no result results but don't call with negative screens. Other women on here have told me around 9 days is about right for them to get results. It's all done over the phone unless I leave it until our appointment on the 29th then we get them then (probably negative if they've not called by then)

hopinghopefullyagain · 20/02/2016 14:57

Ok so the weekend to get through then. Whenever I say that I always think back to our 20 week scan that we had on a Friday and the follow up that we had on the Monday. That was our mantra that weekend.
It's wierd - the rational part of me genuinely believes it's going to be ok thus time but I still worry. I woke up after a dream that I couldn't breastfeed this baby and then remembered that if that's all I have to worry about I'll be ok. Do you have any plans for the rest of the weekend?

KittyandTeal · 20/02/2016 15:06

Yeah strange thing is I actually feel fairly positive about this baby, in the same way I had a gut feeling something was wrong with dd2 I have a gut feeling that things are ok (although I also have a feeling we may get a T21 diagnosis but actually that's ok with me, I know it's not ideal and what you'd wish for but I can definitely handle it)

I think the waiting for results has really worn me down and has brought back lots of really difficult memories. My dh tells me it's different this time, with dd2 we were waiting to confirm bad news, we knew it wasn't good. This time we are waiting for them to confirm everything is ok (I'm counting a T21 diagnosis as ok) but it still feels so hard.

I've been trying to keep busy this week and it's kind of worked but I think I've really worn myself out, I'm still suffering fatigue and getting over a cold. Today dd1 had a friend over which was lovely and tmrw is probably down to my parents so keeping kind of busy. It's always there in the back of my mind though.

How are you? Sorry, I've had a real moan today!

hopinghopefullyagain · 20/02/2016 17:27

Moan away, that's why we are here. I'm ok - back to feeling sick, worried about the scan and my clothes don't fit me but other than that, all is well 😅!

It's funny, we were only talking this morning about how a t21 diagnosis would be ok. Not what we might choose but ok. In fact, while we were waiting for amnio results before, we hoped and prayed for t21.
Glad you are keeping busy but I know what you mean, it never goes away does it?

KittyandTeal · 20/02/2016 18:02

It's funny how a T18 or T13 diagnosis make others things seem not so scary.

My jeans most definitely don't fit. I gave away all my old maternity clothes when I was told I couldn't have any more. Luckily my friend has given me some so atm I'm squeezing into my own jeans and a couple of pairs of hand me downs. I'm not ready to buy more yet though, not till results day. That feels like a big step.

hopinghopefullyagain · 20/02/2016 18:25

No I'm squeezing myself into my ordinary clothes until after the next scan. All being well I'll get the maternity clothes back out then. Couldn't wear them for work yet anyway as most people don't know and I think they would recognise them because I wore them so recently. I'm not actually sure they will fit me anyway. But that's the least of my worries.
Diagnoses like ours certainly shift your perceptions and expectations - I'd never have believed I'd be hoping for a t21 diagnosis!

KittyandTeal · 20/02/2016 18:32

I know. I remember going to the consultants the day we got our results. A MW asked me to do the normal pee in a pot but and I just started sobbing. I finally managed to tell her no my DH hasn't been violent but that I was getting results that day. She said 'oh dear, Down's syndrome?' My response was 'I wish it was'.

I'm pretty sure a fair few people at work had guessed. I'm usually pretty trim and have a flat stomach (I ran lots and did Zumba regularly before getting pregnant, it's tailed off slightly now) but I've stacked on the weight and my stomach is anything but flat, I guess third time round I was bound to show pretty early. I'm hiding under big baggy jumpers and hoodies but compared to the fitted stuff I normally wear I think it's kind of obvious.

I told my friend a few weeks ago and she said 'I knew it, you're not fat but that stomach is definitely not what it used to be!' Bless her :)

hopinghopefullyagain · 20/02/2016 18:40

That's a brilliant way of putting it - well done your friend. I went back to work in January on a bug diet, exercising and hiding my unlost baby weight behind scarves whilst telling myself I'd given birth 8 weeks before and it would all be good on time. That lasted a fortnight before I was back to eating every 2 hours. I'm sure they all know but no one dares ask in case they are wrong. Ah well. The fact that I've just sent dh out for chips won't help but I don't think I can stomach much else tonight

hopinghopefullyagain · 20/02/2016 18:40

Big diet - I definitely would lose weight in the bug diet!

KittyandTeal · 20/02/2016 19:05

Yeah she's the only friend I have who can say that and somehow I don't feel offended. We have a friendship based on similarly warped senses of humour. Grin

Yeah I've given up on any sembelence of healthy eating. I'm lucky that I tend not to feel sick for too long, usually 6-9 weeks. However I get shaky and sick if I don't eat every 4 hours or so.

I'm currently tentatively looking at running buggies. I love running since loosing dd2, it keeps me sane and clears my head. I know I'll have to force myself out but equally I know it'll do me good

hopinghopefullyagain · 20/02/2016 20:27

A running buggy sounds like a brilliant financial and emotional investment which will keep you sane and it can't hurt to know what is out there can it? I've had a quick browse of maternity clothes and remembered why I didn't really like them

KittyandTeal · 20/02/2016 20:29

Yeah they're generally not my style tbh. I lived in jeans and sweatshirts/vest tops last 2 times.

hopinghopefullyagain · 21/02/2016 17:00

How are you feeling today? I really hope that tomorrow brings some good news

KittyandTeal · 21/02/2016 17:05

I'm feeling a bit better than yesterday. Mainly because I've managed to distract myself a bit. My stomach is turning whenever I think about making that call.

I'm calling when dd1 is napping in the afternoon so dh will be around too. Just hoping they've got results.

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