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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

AIBU to not go to midwife regarding reduced movement? *Poss TW?*

999 replies

booandbumpp · 18/09/2018 07:52

Can someone please tell me what to do? Posting here for traffic.
I am 34 weeks pregnant - complicated pregnancy, baby has a severe CHD called Hypoplastic Left Heart Syndrome, and will need a surgery in the first week of life.
I also have high pressure in the placenta and am on weekly monitoring for that. Baby is measuring small due to this and I need to be induced early - at 37 weeks - if the pressure stays high, which it has consistently been for the last 5 weeks.
Baby will be borderline "big" enough for the surgery if born at 37 weeks. Can't keep him in longer, can't delay surgery, otherwise he will definitely die. Nothing I can do to help with the pressure in the placenta.
I've had reduced movement yesterday and today. He's never been the most active baby, but yesterday and today I've barely felt him. FMU consultant told me to watch out for this due to the pressure in placenta possibly getting higher and there being no forward flow of blood to baby.
I haven't yet - partly because I'm having two scans tomorrow - one with cardiologist, one with FMU consultants anyway, so I'll get answers then. Partly because I'm selfish - I'm scared, I don't want to miss another day of work, I don't want to drag my partner out of work to sit next to me for 4 hours at a maternity hospital.
And also because honestly what can they do? They induce me now because my placenta won't work properly, he'll still die because he won't be able to have surgery. They leave him in there with negative flow, he'll die, or stop growing.
I'm not crying, I'm barely upset, I'm just stuck. I feel so annoyed at myself for not being able to make a decision, but I guess thats because I feel like no matter what decision I make, its the same outcome.
SO, sorry that was longer than I expected. WWYD?

OP posts:
Thread gallery
7
octoberfarm · 09/10/2018 08:23

Wishing you all the luck in the world for the next few days, OP. Thinking of you Thanks

SinkGirl · 09/10/2018 08:46

I hope today is the day OP. I haven’t experienced what you are going through as I had no idea one of my twins was close to death until an hour before my emcs. However, he did spend two months in nicu and then two weeks in HDU after a brief stay at home. It’s not an easy place to be but the staff are absolutely incredible and although it was so hard having to leave him every night, I knew he was being taken care of as well as I would take care of him myself
(or probably better).

A long nicu stay is a feat of endurance. As hard as it is, once you are discharged please make sure you take some time to rest each day or night. I didn’t for the first few weeks and I really paid for it - ended up with whole body swelling, cellulitis, a nasty infection etc because I wasn’t eating or sleeping enough. It’s so so hard to spend even a second away but remember that you can’t pour from an empty cup.

I hope you get to meet your baby today and that you get the cuddles you so deserve. If you don’t get them today, hold on to the hope you’ll get them tomorrow. I didn’t get to see my little twin until the next day or hold him for several days, but it was one of the happiest moments of my life.

Sending you all the love Flowers

Costacoffeeplease · 09/10/2018 09:04

Hope all goes ahead today, best of luck

Original poster
booandbumpp · 09/10/2018 09:43

I'm cancelled again. I'm crying now. I'm just so fed up and exhausted. The midwife today said "well I think this is why you've been booked in early". I tried to explain that it isn't - the consultants wanted me in early due to high pressure in placenta and high fluid and they just brushed me off.
I understand if there's no beds there's no beds, but I feel that they think that it's just a cardiac issue. I would be being induced this early anyway because of the issues with placenta.

OP posts:
MatildaTheCat · 09/10/2018 09:46

Does the consultant know you have been cancelled? I’m sorry I haven’t read your more recent posts but as a midwife I urge you to have a word with the most senior midwife on duty and insist that they speak to the consultant in charge of your care.

They may not have a bed but you should be their highest priority. Sometimes the message simply doesn’t get through.

Best wishes.

Original poster
booandbumpp · 09/10/2018 09:57

I rang FMU at Leeds to see if they could speak to consultant to make sure they're aware I've been cancelled again as I was concerned that the pressure and fluid were no longer being monitored and the midwife said she'd do it but did say the consultant on call would be aware.
I did loose it on the phone a bit just so upset I couldn't get words out without balling.
I've rang local FMU too. They're getting my notes and ringing me back.

OP posts:
Puddingmama2017 · 09/10/2018 10:03

Oh my goodness, that is appalling. I’m thinking of you and hoping so much that someone somewhere realises the severity of what you are dealing with and gets you in today.

The consultant on call isn’t good enough. Please call the switchboard ask for for your consultant’s secretary, they may be able to get hold of your consultant directly for you.

mummyhaschangedhername · 09/10/2018 10:07

So sorry OP, you really don't need this right now. You could try calling the patient advocacy service but they usually take awhile.

In my experience the midwives only have a limited amount of details, so I think it's likely they do not understand the entire situation here, insist on speaking to the consultant.

I'm sorry you have to do all this when you are already having to deal with so much. How would you feel about a hospital further afield? That's sometimes the option they can give, happens a lot in my area due to limited number of nicu beds,

InSpaceNooneCanHearYouScream · 09/10/2018 10:08

Yes,speak direct to the consultants secretary! Good luck Thanks

notapizzaeater · 09/10/2018 10:10

That's shocking, the mental stress must be horrendous. Hope you get somewhere today x

Original poster
booandbumpp · 09/10/2018 10:19

I have a headache from crying now ha. Local FMU are getting my notes and passing to consultant. I'm hoping they tell me to come in for a scan - if not I'm going to have to go for monitoring or something because I just need that reassurance now.

OP posts:
IthinkIsawahairbrushbackthere · 09/10/2018 10:56

So sorry to read this. I hope you get through to someone senior very soon.

NotMyCircusMonkeys · 09/10/2018 11:07

I've read the whole thread and want to wish you, DP and baby all the luck in the world. I hope that a bed becomes free for you and you get to meet your baby soon. You are already an amazing mum Smile

Littleredhouse · 09/10/2018 11:09

I'm sorry you've had to go through several cancellations on top of everything else you're dealing with. Fingers crossed there's a cardiac bed available tomorrow and you can go in.

DowntonCrabby · 09/10/2018 11:16

Goodness what a stressful time. Fingers crossed they see you today. FlowersFlowersFlowers

Original poster
booandbumpp · 09/10/2018 11:27

Going into hospital for more monitoring - midwife asked me to come in. I'm going to mention the high pressure in placenta and how the delay is affecting me and hopefully they will put a plan in place for if I am cancelled again tomorrow.

OP posts:
Puddingmama2017 · 09/10/2018 11:46

Got everything crossed for you OP.

Would it be worth speaking to the patient liaison team while you are there for monitoring, to make them aware of the issues you are facing in case you need their help advocating for you in the near future?

RubaDubMum89 · 09/10/2018 12:51

I've just read the full thread, fingers crossed for you OP. I'm so sorry you're in such a difficult situation. From what I'm reading it seems you really are coping fantastic with things, even if you don't feel you are. I couldn't be even a third as strong as you've been.

Laiste · 09/10/2018 13:21

Hope your all settled on the monitor now Flowers

There are times in life when you think ''this time i'll be looked after surely. I won't get forgotten, dismissed, mixed up with someone else this time ....''

and then you bloody do!! And it's so unfair and exhausting on top of everything else. I'm right with you OP. It happens to me all the darn time. The squeeky wheel gets fixed OP. In other words even though it's not like you and it's not fair to have to do it - make a fuss. Cry. Be in bits in front of people at the right time. Make sure everyone knows all about what your situation is and you'll get the help and attention you need. Sadly it seems to be the only way to be sure these days sometimes.

Everything crossed here Flowers again. And some Brew

thornyhousewife · 09/10/2018 13:21

OP you are handling this so we'll - have you got your partner with you who can advocate on your behalf? You need to need to conserve your energy for post birth, not fighting to be seen now. They shouldn't be putting you in this position, I'm so sorry.

You're doing the right thing by insisting on going in for monitoring, well done.

Wellfuckmeinbothears · 09/10/2018 13:26

Oh love, you poor thing. What an awful wait. I know it’s different but when my dd was scheduled for corrective surgery for tetralogy of fallots (she was 1 at that point but had already had 3 open heart surgeries just after birth) they kept cancelling it due to lack of beds and it was such a...anti climax, I don’t know if that’s the way to phrase it! But I would gear myself up to it and then at the last moment it would be cancelled and I just felt...flat and frustrated. It went on for almost a week and in the end I really lost my cool over the phone! I’m not proud of it but I was so fed up of building myself up to the possibility of losing her in surgery and then the op was cancelled. Every one kept saying I should be grateful for every minute with her as her not surviving the surgery was a very real possibility and I really was grateful, I adore her and I’m thankful for every second with her but at that time it was make or break in terms of her making it through and i felt like I was stuck in limbo. I couldn’t let myself love her or be happy because I just didn’t know what was going to happen. Sorry, I’ve used your post as a bit of a therapy session! I think what I’m trying to say that although logically you know the longer he is in you the better but it’s ok to feel frustrated and want it over so you know what you’re up against. Thinking of you all Flowers

mumof06darlings · 09/10/2018 13:45

That is shocking - you poor thing 💐💐

JLG19 · 09/10/2018 14:30

Angry I can’t believe that you’ve been pushed back again. I’m glad you’re being monitored for reassurance. I wonder what would happen if you just refuse to leave? Be strong, boo.

SinkGirl · 09/10/2018 14:40

At my local hospital if there aren’t sufficient nicu beds (eg if you’re having twins) they’ll send you to another hospital. I don’t know where the nearest hospital is with cardiac cots available (maybe Manchester) but I’d be asking them what the plan is if they still don’t have the space tomorrow. I really hope they can sort this out quickly for you Flowers

SirVixofVixHall · 09/10/2018 14:46

Oh op, how terribly stressful to have the repeated cancellations on top of the worry about your baby. Thinking of you here and hoping you are ok.

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