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

Thank you all again, really appreciate the support. Hope you're all doing well?

Today, I actually managed to write down my birth story - 1 month post giving birth to Roy. I couldn't remember what happened properly so had piece it together with my DH and DMum. Can't believe what's happened to us still. Feels like someone else's story

Well done twittle. Was that a suggestion of someone at sands or a doctor?

It was Sands - to help process what's happened and to also use it as a tool to ask questions for our consultant meeting which I've yet to actually be given.

Just want to have that consultant meeting now, I need answers and hope on a way foward (if DH ever agrees)

Thinking of you @TwittleBee .
How's it been going?

Hi Dusty , it's 1 month on from his death today. Where did that month go?

We waited up last night until it was just past midnight as that's when he passed and lit his candle.

DH broke down, it's the most he's ever cried. He was distraught, couldn't get him off the floor.

DH has now taken to blaming the hospital and it hurts to watch him want to blame someone. I'm scared in case he turns that blame onto me.

He's agreed to try again though but as long as we never return to Colchester hospital

Oh Twittle that sounds so hard! It's a normal stage of grieving, looking for someone to blame. I can see why it feels scary.
That sounds like a really beautiful , simple way to mark the month- your DH must have really needed that sob. I hope you are managing to let things out a bit too. A month isn't a long time to learn how to live with all of the feelings, and begin to process what happened.
Have you met with the consultant? The bereavement midwife may be able to come to those meetings with you to support you too.

We are still waiting to see the consultant. The latest update is that Roy's death is having to be fully investigated now and so my medical records are "hot property" as it the time of the consultants whilst it's being investigated. So I've been told it will be while until they see us.

We just need answers now. I feel like I'm stuck in this limbo of looking everything up.

But it does seem that it's Group B Strep that caused it all.

Can you urge the other September ladies to please get the home testing kit? So of their waters break they'll be put straight on IV antibiotics which should avoid Roy's outcome for their babies?

Twittle that's awful! Things are very different with group b strep in a full term pregnancy, but I know several on the thread have already tested.
Having to wait for a full investigation must make things even harder. Hopefully it will give you a clearer picture once it's happened, rather than end up being a back covering exercise.

Oh twittle bless you, I do hope you get some answers. I'm so pleased your dh has said you can try again, when you're both ready.

That was a lovely way to mark a month. I can't believe it has been a month. Are you still coping ok trying to get back to normality? Did you find any sands friends?

I've got a test, just in case, thank you for thinking of all of us still x

I hope they’re doing a thorough investigation @TwittleBee, what a beautiful way to mark such a painful tome for you both. Shall ask my midwife about Group B strep kit, thank you for thinking of us all x

Just want to scream and tell everyone whose waters break early or before labour starts, to get hooked up to IV antibiotics straight away as infection is leading cause for PPROM. Hurts so bad to think this isn't standard practice.

Keep hating myself too for not mentioning how DS had sepsis when he was born due to my waters breaking early too. But then I think, why wasn't that flagged on my hospital notes?!

Looks like I have an infection in my scar too now... it's so swollen and sore on one side. Barely feel like I can do anything. I'm so tired too. Not what I need during my first postpartum period.

Keeping my fingers crossed for all you ladies and babies. Do let me know when the next baby is born.

Poor twittle. I do think you need to be taking more time to rest and heal lovely I really do. You've booked in for someone to look at your scar too haven't you?

I have a 6 week postpartum check but it's actually booked in for 8 weeks because all the female doctors are booked until then.

I'll call the surgery tomorrow though to see if they can see me before about my potential infection.

Was difficult booking in that 6 week check as the receptionist asked if I had registered my baby yet. When I said no she then told me i had to do that before. Cue me crying trying to get out the words "he died". So I'm nervous about making that call again and seeing a doctor in case they don't know my history

Twittle that's horrible with the surgery. Can your Mum make the call for you for an urgent appointment, and ask the receptionist to make a note for the doctor to be certain they don't say anything awful?
The last thing you need is problems healing! You've more than enough on your plate!

I actually managed the phonecall, I figured that surely the receptionist doesnt need to ask about my baby if I am phoning about poss infection?

Appointment is this afternoon and think I shall be asking for some help with my mental health. I suffer from anxiety and depression anyway but I've had no one from my MH team contact me at all and I've been plagued with suicidal thoughts past 2 days. I know if I didnt have my toddler then I wouldnt be here still.

Keep thinking what if Roy needs me wherever he is...

Oh Twittle, Roy does not need you. He is being looked after now. It’s people here that need you. Your DP, your son and you would break a lot of hearts if you acted on those thoughts. Hearts that are already suffering along with you.

I’m glad you are asking for help. Be strong and keep moving forward and you will get there. Grief never leaves but the raw pain does go away.

I do have group b strep btw. I tested last week at 36 weeks.

Twittle excellent re the appointment- and excellent that you are planning to ask for help. That's a hard thing to do. Sometimes it can be easier to write down what you want to say and bring that with you.
If Roy needs you, he needs you here, to hold his memory, and to hold his family as you all learn to travel through this dark place, one step at a time.

Twittle well done for making the call. You make sure you are brutally honest about how you're struggling please. There should be a crisis team they can put you in touch with. They should be able to help you in the interim before proper help is sorted.

Roy does need you to be here and look after his daddy and big brother. He will be waiting for you but not for a long long time yet, you have other things you need to do. Life will not always be this dark.

Crisis team - you need them - do not leave from the doctors until they refer you. It will be hard but you must tell them about these thoughts. They're not your fault, but you do need help recognising them for what they are, a nasty horrible disease that's worked its way into your thoughts. It's not you thinking these.

All ok twittle? X

I'm so relieved you got yourself tested for it Karigan ! I know the risks are totally different for term babies but it still means that the risk is even smaller now for you and baby.

I think anyone whose waters break early should surely be tested and be put on IV antibiotics straight away? This is standard practice in many other countries and has really lowered the death rate from group b strep too in those countries. Why are we so behind on this? I think I'm going to start joining the campaign to have this changed, volunteer and fundraise with the GBSS charity. Will feel like I'm doing something positive for Roy then.

DustyDoorframes I wish I done that now, write it down for the Doctor. I just assumed he would have seen my file before I walked in so would know what I'm struggling with. Nope, instead he started the conversation with "take a seat, how's your baby doing?" Cue uncontrollable tears.

Thank you for checking up on my Kyles - the doctor did make contact with the crisis team, I'm to go see them on Friday. I'm pretty surprised by this as my previous 2 dark clouds I've had they've always come to me the same day. They didn't seem that bothered on the phone either when arranging. Maybe that's a good sign, they know this is all caused by grief this time.

In the office today, struggling so hard to concentrate. I so wish that we could afford for me to take more time off work. But then again, even if we could I would only be having even darker thoughts on my own. I need to get into pushing through this and back into my brilliant work form. They've said I'm still going to get this promotion now, in September, and so really need to make sure I can actually cope with that for my team's sake.

Twittle that's atrocious with the doctor!!!! And very unimpressive re the MH team too. Although I'm so glad you are in the system now!
And campaigning sounds like a brilliant focus to remember Roy by, I'm so glad you've found the GBBS.

Twittle that's atrocious with the doctor!!!! And very unimpressive re the MH team too. Although I'm so glad you are in the system now!
And campaigning sounds like a brilliant focus to remember Roy by, I'm so glad you've found the GBBS.

Twittle, we're all here behind you, trying to keep you going and wish you strength. If you feel it will help to campaign then jump in, but don't feel like they need you to- the last thing you need right now is more pressure.

Tell them everything in your meeting, write it out if you can, maybe print out your blog if you can't write it down? But it might be helpful to do a session where you just sit down with a pen and paper and just write your heart out, get out all of those thoughts that you try so hard to keep back and answer them.

Have you had any more luck with SANDS?

Have you had any more joy with sleeping Twittle?

The work promotion is something really positive for you to focus on twittle. So you have that and your wonderful ds and dh to focus on, as well as one day when you're all ready trying again. You'll never ever forget Roy but you must not feel guilty for aiming towards finding a happy place.

As knobjockey says the campaign would be a nice thing to join, but don't make it take precedence over anything else you have to concentrate on at the minute.

Hm, good for dr to have got onto crisis, even though you could have probably should have been seen a little earlier than Friday. Can't believe the opener, they really are idiots, there must be a better system... did you get any antibiotics? All steps in the right direction though. Would you talk to dh about these thoughts or is it too much?