Early Oct babies part 5

[Treaclepie19]

Hi all! ❤

@babymama09 I am so sorry you're having to go through this and make this decision. Like the others have said get as many medical people involved for different opinions and options, which I'm sure you're doing anyway. I'll be thinking of you x

@otterbaby and @LostinAusten2 Thank you for your supportive messages, we are going to the scan on Tuesday to see how baby is doing, I can feel her move around and My heart breaks everytime I think that it might be the last time she will kick. They are refusing to even look into helping her they have spoken to a consultant from LWH but he has agreed that the baby will not survive even though there are things that can be done as i have read online such as draining when she is born or shunts. They are not giving me these options at all and I have no idea what to do. I lost my last two girls to this condition and after having a surviving little girl didnt think this would happen again. I cannot explain how I am feeling or how my dh is feeling we are completely gutted. But i will keep you all posted on how she is doing thanks again for the support I will add my book to a post when its ready. I want them to do the gene testing on my daughters skin cells from 09 to confirm the reasoning behind the condition but they are refusing at the moment, I have also written to a DR in london but i dont know how much help that will be.

Thanks again xx

@Treaclepie19 - sorry hunny its just not something I could bring myself to do I know others have their reasons and their rights to do so, so please don't take offence by that. It is around all her internal organs and they have stated that they wouldn't be able to drain it as it is very severe my argument is that i have read similar cases where they have drained or attempted and it has worked. I am struggling to come to terms with the idea i wont get to see her.

Hydrops is fluid around the internal organs caused by one of two things, immune hydrops - RH +ve mum and -ve baby which isnt me
Non Immune - no reason or could be lymph defect / exome sequencing deficiency but they have no evidence of this as they wont do the tests until my baby has died.

Both my girls in 07 and 09 died of this condition, one in the womb the second when i was giving birth to her and i then nearly died due to a broken placenta.

I am praying for a miricale

@babymama09 I am so sorry your heart is breaking like this. Sending you love and strength

@babymama09 I have been wondering how your got on since your last scan. I'm so sorry to hear you arent being given many options.
I'm not sure where you are based but is it possible to get a major fetal medicine unit? I was sent to Kings college hospital fetal medicine research centre in my previous pregnancy and I know I spoke to a lady in a TFMR thread about Birmingham having excellent fetal medicine specialists.

I had labour induced at 22 weeks last pregnancy and was given the choice to have the injection to stop his heart. As it happend, I had an infection so labour had to be induced to save my life before I could make the choice. I understand how hard it is to be told this is the final outcome. My heart breaks for you.
I have no experience of hydrops other than I have also read an article years ago about a baby having shunts to assist the fluid drainage. I would fight to see another Doctor. You are definitely entitled to have another opinion.
Sending you hugs x

@nwnature good luck with the renovations!

Thank you for sharing all your kick stories lovely to see where we are all at, its helping me get through this board at the minute

@herondaleducks oh god that would be me! My dp did thay last week wanted to chuck him on the street

@spark27 I'm thinking of getting a cleaner as well, was literally thinking about that today when my kitchen was stressing me out

@babymama09 that's a terrible situation to be in I'm sending all my love and hugs, I cant even begin to imagine what you must be going through

@babymama09 I am so sorry to hear your news. I cant even begin to understand what you are going through. Sending lots of love to you and your family. xx

@babymama09 oh I’m so sorry to hear this! It must be frustrating as it must look like they are not even trying, which is heartbreaking xx @otterbaby that is a beautiful keepsake xx

I'm so sorry @babymama09 sending you lots of hugs!!
Can't they test for the condition any earlier- I have a genetic condition which if the baby has it it's very unlikely to survive past 5 dats pistnatal if it survives in the womb so I've lost 2 little boys to this by TFMR at 13 weeks as I have CVS at 11 weeks (it's1 in 2 chance whether they will have it)- is there no genetic test for hydrops? Xx

@babymama09 I am so sorry to hear this . Ucl hospital in London have an Fetal medical unit see if your hospital can refer you . I have attached a screen shot of how they can refer you . Or see if you can self refer - I changed hospital recently by self refer .
I wish you all the luck and hope that your hospital stops being so crass and helps you to what you want and not what’s easy for them.

@babymama09 I'm so sorry to hear what you're going through.
What a horrible choice and situation. Thinking of you and hope you are being well looked after and being kind to yourself xx

Sending hugs @babymama09. I can’t imagine what I’d be like in your shoes 🙁

Also wanted to say how lovely all your bumps are 🥰

I still have not put on any weight and am Starting to get a bit worried about it ...

I have a question regarding pram suits - are you guys getting one for baby seeing as we are heading into winter, or just going with blankets?

Also, is a gestational diabetes test during 2nd trimester a thing for all of us? I’ve had no mention of it, and apparently it’s supposed to be done before week 28?
Can’t believe I’m nearly 24 weeks already 🙈🙈 scary

@couscousevaporator I've not had it mentioned to me either, and I'm not going to see my mw again until I'm 28+4. I think the test is triggered by other factors- previous pregnancies/birth weight, family history, bmi, etc? But I'm really not sure. I didn't have the test in my first pregnancy either

Ah thanks @Spark27 that’s reassuring. I feel a bit all over the place with my midwife as she only works one day a week so I can’t ever get hold of her to check these things!
Hopefully that means I’ll escape the test then!!

Hey @CouscousEvaporator do you have the number of another midwife? I have a 'team leader' midwife, who I've never actually met but always call her because I can never seem to get through to anyone else! I found it quite isolating not being able to reach out to my midwife! Once I spoke to the team leader, she gave me another number where you leave a message and a midwife gets through to you within 24 hours! It can be really frustrating at times! But once you get through it's really reassuring to have a chat xx

@lucylou37 I haven’t ever spoken to the same person twice as the alternative number I have is the one that you ring when you’re in labour 🙈 they take a message and pass it to my midwife when she’s in. I don’t enjoy ringing it so I just try and google the answers to all my questions instead. Last time I spoke to her, I was concerned about the urine tests (and the fact I haven’t had any) so she said I could test at home. So I am, but I don’t think it’s necessarily a good thing for me to be doing without her checking me...
I think I’ll try and call her again tomorrow and just chat through it all. I don’t want to come across as a worry wart though! 🙄

@CouscousEvaporator I have my gestational diabetes test this week. I have it because my mum had it and I have a high risk of diabetes in my family. Also because I'm considered fat. Sad times.
If you are worried I would ask the midwife about it.

@herondaleducks I hope it goes well this week x
Thank you, I’ll call tomorrow 🙂

@CouscousEvaporator that sounds a bit crap! I felt exactly the same as you last week, I don't want to call and make a fuss! But then I thought actually, that's their job. I even said to the midwife last week, I'm sorry for all the questions but it's my first baby! She was very understanding, and the answers she gave to my concerns put my mind at ease! I'm a big googler, but sometimes I find it makes things a bit worse! Next time you speak to her, I'd tell her exactly how you are feeling! It seems a bit weird that you're expected to do your own urine tests?! Xxxx

@CouscousEvaporator I've read from several people that pramsuits are a huge faff to get on/off. Someone recommended the Tuppence & Crumble Starsnug to me so we're going to get that!

@CouscousEvaporator I was worried about not really having a bump. Especially as I had oligohydroaminos in my previous pregnancy. Everything was fine at my scan. I'm guessing your scan was fine too so I wouldnt worry. I posted a picture of me at 22 +3 a few pages ago. I havent put on any weight either. In fact other than the heartburn and some small baby movements I dont feel pregnant at all! I'm tall (5'10") and my uterus is still tilting backwards so they said that's why I'm hardly showing. Was it you who also mentioned you were tall? If so theres plenty more room for baby in there! Or maybe position of baby means you haven't popped yet.
If I have a top on people dont realise I'm pretty much 6 months pregnant. My sister didnt show till 7 months with hers either.

I'm surprised they suggested testing your own urine? Did they do a urine test at your 20 week scan? At my hospital they did blood pressure and urine then as they said we were having limited midwife appointments.
Like @Lucylou37 said, asking the midwife questions is what they expect! Especially from worried first time mums in a pandemic!

@otterbaby ohhh thank you, going to have a Google of that. Was thinking of getting a pramsuit but did think they look a bit fiddly.

Thank you all for your supportive messages, I am sorry to keep coming on here to spread my sad news when all of you have your babies to think of. @BooMamaBear - they can perform genetic testing on my daughter from 09 skin cells to determine whether it is a lymph defect or exome sequencing defect but didnt think to do it at the start of pregnancy. I was never given a reason for the hydrops last time as i refused autopsy's on the girls. They are waiting for this one to pass to do it to her instead.

Thank you @Zaalfruit I will have a look it. I have contacted a specialist in London to ask for their advice. LWH have a fetal centre but their specialist has written this baby off before seeing me, they have been shown the scans from this baby and have said there is nothing they can do.

Hi girls! That’s me 23 weeks today and defo getting a lot more movement. He was going crazy in bed last night lol! @babymama09 please don’t feel that way, we are all here to experience our pregnant journeys, no matter. Meeting my mum and sisters for a social distance walk, cannot wait! Not seen my mum in 3 months !!!! Just hope it stays dry! xx

@babymama09 -hope you get some answers and that someone will be able to help!
@CouscousEvaporator -I have a couple of Pram suits (from DD) if your baby is going to be in a pram for a while they're a good idea if you're getting them In and out of cars blankets maybe better as you don't want them to overheat unless it's really cold!
Also it friends where you live re-gestational diabetes i lived in 3 different cities when i was pregnant with DD 1 NHS trust did the test routinely but the other 2 only do it if you have certain markers think they'll discuss it at your 28w mw appt! Xx