Recovery from TFMR

[mooncalf]

Hi all - not sure if this is in the right section...

I am booked in for a tmfr on Friday (or maybe Monday if there is not enough space - find out today) after having a positive result for downs from an amnio last Thursday. I had the amnio after a 1:4 risk after the initial screening and then a high risk result from a harmony test.

I've been terrified, and sad and it's been so hard and heart-wrenching to even make this awful decision. But now we have... and I am mostly numb to it all. I am worried about the procedure - labour and delivery - but also the recovery afterwards.

Is there anyone who has gone through this, and can give me any advice? I suppose it is different depending on what stage of pregnancy you are at. I'm currently 16+2. I suppose at the moment I am just concentrating on what happens afterwards, so that I don't have to think too hard about what happens during.

If anyone would mind sharing their story, I have no idea really what to expect...

thanks x

Hi helsbels

I'm so sorry to hear that you are going through this awful time. You are very welcome here - I think we have to stick together. Thanks for your post, I hope you are doing ok, and I'm glad to hear you were looked after properly.

Our midwives were amazing too - so kind and supportive and gentle with us. It was, of course, an awful day yesterday, but I felt relieved and quite peaceful after. It all happened very quickly - I'd had some paracetamol at the beginning of the cramps, and had just called for some codeine or something, when it all started happening, so there wasn't time for anything more. He was breech and got stuck :( I had help to deliver and it was agonising, but all over quickly. Sorry if this is tmi, but I feel I need to say it, and people who haven't been there understandably don't really want to know. Maybe you don't either!

We were so unsure as to whether to even see him, bit in the end we did, and although it was very difficult I am glad we did. He looked so serene and perfect. We hadn't taken anything for him, but we were given a memory box from Simba charity and inside was a little blanket and hat and knitted teddy, and I'm so grateful for that. We took away some hand and foot prints.

I really thought before this happened to me that it was pretty gruesome to do that, but I get it now. It just made it seem more real, especially for my dh, who of course did not have the same connection as me.

Today I am very tired, and sad, but being kind to myself and dh and letting the tears come when they want to. It feels strange having given birth, but there being no baby to hold, just a tiny wee thing, left behind. I keep putting my hand on my bump, but of course its not there now. I feel very empty.

I know I will heal, and one day be able to think of this without crying, and without feeling guilty, and that keeps me going. Reading stories from other ladies who have been through this terrible experience helps me feel less isolated, which is really the worst thing, so thank you for sharing, and I'm sorry you have found yourself here too.

Love to all xx

I'm glad to hear that the physical part of the process was quick at least and that you were well looked after. We had a memory box too and it bought us a lot of comfort both at the time and afterwards.
It's been horrific but I can say that every day is a tiny bit easier than the day before. We are mostly able to talk to each other but it has helped a lot to be able to talk to other people here as well.
I found it incredibly strange that I'd given birth and was home without a baby. It was as if it hadn't really happened and was so so surreal. I couldn't believe I had actually given birth. Even now, I keep going to touch my bump when we are talking to or about our baby. Have you got practicalities to deal with? I found making funeral arrangements both helpful and devestating.
You are right to be kind to yourself and to each other, you'll need to take care of each other for a good while to come yet.

Oh Mooncalf, thank you for updating us. Glad that you were well looked after. Similarly my daughter was breech and got stuck needing quite a bit of help to make it out. Not really painful due to the morphine just a bizarrely surreal experience, almost doesn't feel like I have been through a labour at all. Except that my milk has come in today which physically hurts and is a devastating reminder that I have no baby to feed.

I've not yet been able to open the memory box the hospital gave us, but it's a lovely idea and I do feel comforted knowing there are some little mementos there when I feel ready. At the moment I keep reliving things from the weekend which is too much to take as it is. Thank goodness for the sleeping tablets from the GP; at least I can switch off enough to sleep.

Have you given any thought as to whether you are going to have any sort of service? I'm finding it difficult to get my head straight enough to make any decisions about this but I keep being told that there is no rush as it will take 6 weeks or so for the post mortem and tests to come back.

I hope you are managing to get some rest and are looking after yourself. The emotions are almost unbearable but I guess it's just taking things a day at a time. Have you been in contact with ARC at all? I have found them very supportive and they have put me in touch with another woman who went through similar a few years ago.

I'm thinking of you Mooncalf. It's a club you never want to join but I hope you are finding comfort in knowing that there are others going through this with you, and those who are adjusting to life after a loss.

Take care, keep in touch x

I've been thinking about you mooncalf, thanks for the update. Sorry to hear your story Helsbels81 :( I hope you both have a swift physical recovery. The emotional side is much more difficult of course but it does get a bit easier eventually.

Helsbels I was given a tablet of something to stop my milk before I was discharged from the hospital. It might be worth asking your gp or midwife if it's possible for you to have it now maybe. Take your time making decisions, the right answers will come to you in time. We had a funeral for our baby at our local church and she is buried on the baby and children's garden at our local cemetery. We were absolutely dreading the funeral but found it a comfort in the end but we know it wouldn't have been for everyone.
The best advice I can give is to be patient and kind to yourselves and to remember that the pain will ease. It won't ever go away but it will become bearable. Or more bearable at least.

I had the tablet to stop the milk coming in too, though my boobs are massive and sorer than ever, so I don't know if they worked? Five days seems ages for milk to come in helsbels, how awful for you to have yet more to deal with.

Bleeding has slowed right down, and cramps too, but the physical bit is easy, really isn't it?

It's the emotional bit that's hard. We are talking, which helps a lot, as you say hopefully, and I am not immobilised by grief at all times, but my god, when it hits me I just feel as though I will be forever inconsolable.

Last night, as I tried to go to sleep, I just bawled for an hour straight and couldn't get out of my head that we had made the wrong decision. That I was selfish and awful, and all those perfectly rational reasons we had takes so much about were just a justification for that selfishness. I couldn't stop thinking about how I'd failed him, and left him cold and alone. It was awful. I dreamt about him coming to me for comfort.

Today i know we will never know 100% if we made the right decision, but part of our choice was that this way, we would have to bear the pain of it, rather than carrying on and it turning out to be the wrong decision and him having to bear the consequences.

I know, speaking from my mind, that it will get easier, and we will move on to where it isn't so painful, but there is another kind of guilt associated with that.

Ugh, sorry to sound so doom and gloom today, i promised I'd be kind to myself, and to each other (it is easier to be kind to my dh). I am mostly, but sometimes the greetings just come, and they have to be felt, before they can be let go.

Hope you are all coping as well as you can xxx

• the feelings just come, not the greetings - stupid phone ):

Hello Mooncalf, goodness me those thoughts that play continuously are unbearable aren't they? I wonder if the guilt ever gets easier? I wasn't up to going home the same day as DD arrived so stayed overnight. We spent four hours or so with her afterwards but I was quite drowsy with the morphine so I asked to see her again on Sunday morning. She was so so cold when I held her again I cannot get that sensation out of my head. DP always has freezing cold hands and every time he reaches for my hand the memory flashes up. I feel so very bad for leaving her there all cold and alone.

We decided to go out today for a change of scene and to try to give DS (4) some sense of normality. I think it did us all good but equally I feel quite selfish for doing so and not thinking about DD at times.

I did ask the midwives at the hospital about medication to stop the milk coming in but no one seemed very keen to prescribe it, apparently because it can have some nasty side effects. I didn't pursue it enough really, wasn't really thinking straight I guess. I'm sat here with warm flannels on my chest with milk leaking out of my very big and hard boobs. Argh.

Mooncalf are you receiving support from your community midwife? Mine has been really good, has been out every day, collected my sleeping tablets etc. She said she'll stay involved as long as I need her which is good. Who knows how long that will be... Also meeting with the bereavement support lady on Monday to think more about funeral arrangements. We are taking one day at a time and just trying to focus on the next step along this journey.

I hope tonight is easier for you Mooncalf. The nights are so long aren't they? Keep talking and sharing. Sending you all best wishes and kind thoughts x

helsbels how are you feeling today? Is the milk letting up? I have no idea how long it would last? I am not at all sure mine won't come in despite the pills - they are bigger again today and hard and sore and lumpy. The midwife said they were only just prescribing them in the last 2 week.

I haven't heard anything from the community midwives since they passed us over to the care of the fmu, but I was earlier through the pregnancy than you so maybe it's different.

I had to go back then and correct 'I am earlier than you' to 'I was' :( It's the little things like that, that are getting to me really - the slips in thinking and so on.

We have started thinking about what happens now - a lot of people have said that a funeral of some sort has been helpful, and we are starting to think that we really need to mark it in some way too. We are very lucky indeed in that our hospital will offer an individual cremation or burial at no charge at all, where we can go along and have a very simple ceremony. I think we will do this, just us two.

It's very much one day at a time at the moment, isn't it? One hour at a time sometimes. I can't imagine the thoughts ever stop, when I am overwhelmed by it all - but other times I am very calm about it, and then I feel strange and wonder if I am being too numb or something. Then I remember that whatever I feel is natural and I have to let it be.

I hope you are finding some peace from it too, and sending big hugs to anyone going through our recovering from this awful experience xo

Morning Mooncalf, how are things today? Have you been sleeping any better?

I think the milk in my breasts is starting to dry up, they are more comfortable today. In a weird way I'm not sure how I feel about the milk going actually...

We have been trying to keep busy and do normal things with our son. I'm sure we need the distraction but obviously it's only temporary and then I feel so guilty to not be thinking about DD. I feel so strange, never known anything like it. Also been getting quite a lot of heart palpitations which is unpleasant in itself but then my brain starts working overtime and wondering if I have some undiagnosed heart condition (DD had some severe cardiac anomalies). Gah.

Yes I think we will have a small ceremony too, perhaps we will ask if grandparents want to come but it would certainly be no more than that. I just cannot get my head around thinking about a funeral for our tiny baby, it wasn't supposed to be like this was it?

Thank you for your kind words and support, sorry for gate crashing your thread! It's helpful to share things on here with people who understand.

Take care x

No it definitely was not supposed to be like this. It's hard to believe that this time last week I was still pregnant. And this time last week helsbels you were probably having the worst day you could have as a mum to be - I house you are coping ok today and being kind to yourself.

I get palpitations when I am anxious out under severe stress, and also when I am anaemic (which I tend towards at the best of times) - it could be worth checking those two things out, especially if your head is running away with you!

It is good you are doing normal things - it helps I think, but I do get that you feel guiltier than ever for moving forward. It seems that whatever I do, I am going to feel bad about it, so I am just allowing myself to feel how I feel and not judging myself for it. Well I am trying to anyway, definitely not always successful.

I'm wondering now how long before the hormones drop. After the early miscarriages (7ish and 9ish weeks) I bled for longer, but my boobs deflated quite quickly, and the hormonal lows on the way back down were savage. This time I have almost stopped bleeding already (5 days) but my boobs are still huge, and although I am grieving and very sad, it is not the same as those sudden drops in hormones. I am wondering what's to come - is this it? Surely it can't be? Does it come later, is it slower and therefore less extreme?

Anyway, you definitely haven't crashed this thread - hopefully anyone who wants will join in, and you are very welcome here! Please, keep talking if it helps - it's helping me too!

How are you feeling today?

Thanks for the advice about anaemia etc, as it happened I ended up spending 6 hours at a&e yesterday as my palpitations and dizziness got quite bad so the OOH number wanted me to get checked out. They were quite thorough and did an ECG, checked my blood count, liver and kidneys, which were all fine. In the end I saw a Dr from the Psychology dept who prescribed me a few days of diazepam to help with the anxiety and stress. She also talked about other support routes like CRUSE which was quite helpful. I am feeling quite a bit calmer today and have kept busy with family which is good.

Have you thought about counselling at all? I am pretty sure this will be something I will need, but not quite sure whether this normally happens after the initial shock and grief lessens. Was it kittyandteal who mentioned accessing some specialist support? I'm quite out of things in the south west and not sure how easy specialist help will be to find.

We are seeing the bereavement support lady from the hospital tomorrow to start talking about funeral arrangements. I'm not looking forward to that at all, not really up to making decisions at the moment.

Task for tonight is to pack away my maternity bits and bobs...have books, my ball, pillow snd things strewn all over the bedroom which is really not helping. I really can't stomach wearing maternity clothes any more either. I had a sizeable bump but nothing pre-pregnancy fits yet.

Are your breasts easing up?

take care xx

Hi helsbels

It sounds as though things are moving forward for you, though I imagine that feels difficult in itself!

I'm sorry to hear you were in hospital, and hope it went ok, and you are feeling better for it? I hope all went well with the bereavement service today.

It looks as though its just me and you on here now... I'm going to pm you if that's ok?

Xx

Hi ladies. I realise that this is an old thread but I was wondering how you are doing a year on. I'm going through something similar. I had a cystic hygroma detected at the 12 week scan and so opted for the NIFTY test. It highlighted a deletion on part of one of the chromosomes which is very rare. I'm absolutely heartbroken. I had a mmc in June and now I'm facing a tfmr. I feel like I'm losing hope. I'm scared I won't feel happy again. X