September 2019 #9 - for Twittlebee **title edited by MNHQ**

[IVEgottheDECAF]

New thread ladies as i feel the end of the last one may fill quickly following last nights news!

Once again congratulation Twittle & family

Twittle I can’t even begin to imagine how hard this must be, but you and your family have been in my and my husband’s thoughts all week. It’s so desperately sad that you’re having to deal with memories of your mmc as well as the pain of Roy’s passing.

I’ve had a quick search and the only reason I can see why they might not want your breast milk is if either the freezers where you’re staying aren’t up to standard, or if they gave you any drugs for the section that would rule you out.

Otherwise, I think the donation service is separate to the hospital so you’d express and freeze it and it’d be collected from you and pasteurised. It does sound like registering as a donor is quite involved, but here’s the link to the U.K. milk banks I think you just contact your closest if you’re interested:

www.ukamb.org/milk-banks/

Unmumsnetty hugs to you x

I agree you should get to cuddle your baby, you may end up regretting it if not

Have you been offered any meds to stop your milk? I think my friend was when they lost their dd soon after birth

Yes I've been offered meds to stop it but I haven't taken it - the side effects are horrendous! 1 in 10 experience heart failure !?!?! That's too high for my liking. And there's plenty other 1 in 10 side effects which are all awful too.

I might ask DH for one last cuddle.

i might ask DH for one last cuddle.

With all due respect @twittlebee, if you want to cuddle your son, you cuddle your son.

I'm not very good with words but I wanted to say that I'm so sorry to hear about baby Roy passing. @TwittleBee I hope you are getting lots of love and support in RL x

Maybe speak to these people about the breast milk?

heartsmilkbank.org/

I am constantly in awe of your strength Twittlebee. No wonder your little man fought so hard when he has such a strong loving mum.

No words can take away the pain and heartbreak but know that we are all thinking of you.

Thank you all again for this support. It really is helping.

I've spoken to Roy's nurse who was totally taken back by my suggestion, she said it was very kind to think about doing that whilst grieving. I've loads stored here already in their freezer so just need some blood tests before they can send it off to be pasteurized for use.

No clue what we would do for Roy's funeral, this is also DH's first funeral.

Twittle that is such a gorgeous thing to do, donating your milk. Even if you just decided to go with donating what you have already stored, and not expressing any more, that is still extraordinary and wonderful. I can see how something purposeful must feel right, and I'm so glad the hospital are making it happen.
Re the funeral, if you've had photos I'm imagining there may be a bereavement midwife, who should be able to help you with thinking about the funeral. Remember it is for you, DH and your eldest first and foremost. Do what feels right to you. (Although of course that might be hard to tell!!). I remember when my dad died- which is TOTALLY different of course - and cremation plans were being made I suddenly knew that I wanted him to be buried instead. You might find that talking through the options makes things suddenly clearer.

You are an amazing human for doing this in the middle of your grief. I am astonished. Please cuddle baby as much as you want xx

I have just seen the thread after not being on here for a few days. I'm so so sorry @TwittleBee my thoughts are with you and your family.

Oh twittle my heart is breaking for you.

The medical professionals did what hey thought best and thy absolutely wouldn't have done that if they thought the small time he was going to be given was just to be in pain.

Absolutely if donating your milk would make you feel better go for it. There is nothing you could have done differently, so nothing "wrong" with your milk lovely. That's such a selfless and lovely thing to do.

Completely agree that if you want a cuddle you go for it. That will be the most peaceful place possible for him.

You brave inspirational lady you, I've not caught up with the whole thread but I'll pop back later when I can.

As always, if you need anything please ask x x

@Twittlebee I’m also just jumping on here to say how so very sorry I am to hear what has happened to your beautiful baby. Bloody hell, July ‘19 really is a shit month. This is going to take you a long time Twittle, you and DH really need to support each other and be there for each other. Time does help a little, but only a little. My sister lost a baby at 28 weeks 9 years ago, she still finds it hard, but at some point she did stop crying every day. Sending you so much love Twittle xxx

@TwittleBee my heart breaks for you, what a wonderful thing to think about others during this time. You’re a brave, selfless woman which is how I know you will get through this. And if you want another cuddle, please please do it. The one regret I have is that I only held my daughter once.

Your situation is very different from mine and I can’t imagine how you are feeling right now, but if you want to PM me at all for either practical advice or just to offload, please do.

In terms of the funeral, there should be a bereavement team at your hospital who will take charge of all the details and you can be as involved as you want but they do all the coordinating. We got to choose songs and a reading, and our service was led my the hospital chaplain. I also chose a little teddy and knitted a blanket to go in with her as well. Sending you a huge hug xxxxxxx

Just wanted to add how sorry I am. I haven't posted much but have been reading everything. Twittlebee, you and your family are so in my thoughts- sending you lots of love xx

Sending you all my love and thoughts @TwittleBee. I'm so sorry xxx

@TwittleBee I'm so sorry for your loss, I wish you strength for this time.

Just popping on to see how you are doing today @TwittleBee . Not sure if you are reading but want you to know we're all still here for whatever support you need. Sending strength and a big hug your way xx

Hi @happydays00 , I’m doing as good as can be expected. It’s DS’ 2nd birthday today so that’s been a massive distraction but it has really hit me hard a few times. E.G. we ran quickly into Sainsbury’s to grab a new pair of shoes for me before his birthday lunch (we’ve not been home for over a week now and I’ve been living in flip flops), and I saw the rainbow baby grows that I bought Roy as potential going home outfits which just totally punched me right in the heart.

We also told DS about his baby brother dying too this evening. I know it seemed like an odd one to do on his birthday but It’s the last day we have really to show him Roy, peaceful in his Moses basket as we are leaving the hospice tomorrow after lunch and didn’t want it to be a rushed thing before we go.

The hospice have been amazing, I’m really glad they suggested we come here after leaving the NICU before heading home. They helped with DS’ birthday celebrations amazingly too.

That sounds so hard Twittle, I can't even begin to imagine how difficult it must be to explain to DS what happened.
I hope, despite everything, he had a lovely day.
Know that we are all thinking of you. Tomorrow sounds like it will be a really tough day leaving the hospice - sending you lots of strength xx

Oh twittle, you are so strong. I hope you're getting lots of support. The hospice sound like it's been such a good call. Take it slow and steady won't you for as long as you need.

Oh goodness I've just seen this. @TwittleBee I'm so so sorry for your loss. Like @Rose68 said, July '19 is a terrible month. Sending you lots of virtual hugs. I hope you have lots of support around you

Twittle the hospice sound amazing. Im glad you and your family are getting support there and I hope there is plenty more lined up for you. Wishing you lots of strength for today. Xxx

Hi @TwittleBee , have you left the hospice now? I'm so glad to hear of what a support they were to you and also that you managed to celebrate your other DS's birthday. Your strength really is incredible. Sending you lots of love and you remain in my thoughts!

Yes, back home from the Hospice. We left just before lunch. Feels horrid being so far away from Roy's body, which is silly I know because it's only his body and not him.

It's been really hard being home, like the reality has kicked in.

I actually weighed myself too... I've lost 1.5 stone in tge past week and so am back to pre pregnancy weight.

And of course I'm still suffering with insomnia

Hey twittle. Please be really kind to yourself and take everything super slowly. All of the firsts are going to be horrid, but you'll get through them as a family. I really hope you're getting some support too, as I know you'll be worried about making sure everyone else around you is ok. X