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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
HellaFresh · 07/10/2018 20:44

Hi OP, just read the thread and wanted to add my support too

Best of luck and thinking of you all

hantsmama · 07/10/2018 21:07

I've just read this whole thread and while I have no experiences similar to yours I have a shared understanding of being a mother, and bloody hell your son is going to have an amazing mother. I know you're probably scared and anxious and tired and probably angry but hopefully having these little messages will give you a little light to come back to during the difficult days ahead. I'll be thinking of you and your OH xx

Honeypickle · 07/10/2018 21:23

You are amazing. Best of luck for the next few days. Will be thinking of you x

Original poster
booandbumpp · 07/10/2018 21:39

Thank you for all the support.
I am ok - I had a sleep this afternoon and a hearty spag Bol while watching Doctor Who to make myself feel better. There's nothing I can do about the bed situation and worrying won't make it happen any quicker. I am going to focus on - he's in, he's moving, he's growing. The bigger he gets the better.
Dependant on the bed situation, I'm going to ring local FMU tomorrow as I think with my not being induced they may want to see me this week to check pressure and fluid again, so once I've spoken to Leeds I will ring Sheffield again.
I just need to think of some things me and DP can do during the days we're not in hospital. We can't plan anything because they could call us in at any time, but if I spend another day eating malteasers till I burst and watching telly I may have a breakdown after all!
Thank you again, the messages do mean a lot xx

OP posts:
umberellaonesie · 07/10/2018 21:50

I am sorry to read about your situation thank you for sharing it.
I will be thinking of you, your partner and your little one this week as you face the amazing journey of becoming a family.
Have courage.

Lollirocks · 07/10/2018 22:01

So sorry to hear about your situation, I can really empathize as my niece has exactly the same condition and in reading your posts, I can hear my sisters words. As my sisters pediatric cardiac consultant said to her, and I will say to you, ‘ you have a very special baby’.

I won’t give any empty promises, every heart babies journey is different. My niece had the Fontan with8n 2 days of birth and has had around 5 open heart surgeries since then. She is now 10 and just started secondary school, a time we never thought we would see.

If you want to be in contact with parents going through something similar, there is an incredibly supportive face group book, it is mainly for the parents whose children go to the newcastle unit, but they are very welcoming (search for children’s heart unit, Newcastle). I am not sure if there is a similar group for Leeds.

It’s an incredibly difficult time, I wish you and your family all the best, with the advances in medicine and the care and support available, the chances are greater than ever.

thornyhousewife · 07/10/2018 22:03

What a wonderful mother you are, OP Flowers

Whatsallthisaboutthen · 07/10/2018 22:13

Thinking of you OP. I hope you get some sleep tonight x

BlessThisMess · 07/10/2018 22:50

Oh, this brought back all my feelings of nearly 20 years ago. My first sweet baby had HLHS too, OP, and I remember how terrifying it was and how I hated everybody's optimism like you said.

It wasn't the outcome we hoped for with our boy, but we did get to bring him home and have a few precious weeks with him. I still feel fortunate to have had those. He was the best thing that ever happened to me, apart from my 2 subsequent healthy girls.

I'll be thinking of you and your precious boy. xxx

PatPhelansRedVan · 07/10/2018 23:10

Thinking of you x

GinandGingerBeer · 08/10/2018 00:21

Thinking of you, I'm local to you, I'm trying to think of things you could do instead of eating maltesers how mobile are you? The seats at the light cinema are very comfortable and spacious, they recline right back too and there's an escalator up.
Sorry if it's a stupid idea!
There's a nice cafe in the botanical gardens which isn't too far from the maternity Hosp and you can park quite close by, it's all flat.
Thanks

Original poster
booandbumpp · 08/10/2018 11:01

@BlessThisMess thank you for your message. I'm sorry your little boy didn't make it - I'm glad you got that time with him.

Induction cancelled again. The midwife in charge rang and apologised. She hopes that tomorrow will be D-Day - there were 3 ladies waiting for NICU beds today, but so far it's only me tomorrow so fingers crossed.
I'm going to put on some clothes and try a (very) slow walk around a lake nearby with the dog and DP. Then try and read something and have umpteen cups of tea for the afternoon x

OP posts:
dizzycatdance2 · 08/10/2018 11:22

Oh how frustrating !
Hope tomorrow is ok.
You must be exhausted from the "today's the day" emotions.

IthinkIsawahairbrushbackthere · 08/10/2018 11:23

I just came on to Mumsnet to check you are doing. Your little boy has the best mum. I hope you enjoy your gentle walk and can relax a little while you wait for D day.

MadisonAvenue · 08/10/2018 13:56

Thinking of youFlowers

Laiste · 08/10/2018 16:07

Thinking of you Flowers

Yes, the building up and letting down must be so exhausting. It's almost cruel! Fingers crossed it's tomorrow x

FingerlingUnderling · 08/10/2018 16:48

Everything crossed for you and your little boy OP xx

YearOfYouRemember · 08/10/2018 16:54

Thinking of you too Flowers.

HaveYouSeentheWritingontheWall · 08/10/2018 22:36

I hope everything goes to plan tomorrow Flowers

Crunchymum · 09/10/2018 07:56

Fingers crossed for you today!

Starlight345 · 09/10/2018 07:59

Fingers crossed for today

gingerchick · 09/10/2018 08:17

Thinking of you Flowers

dizzycatdance2 · 09/10/2018 08:19

Hope today goes as easily as possible and that you are cared for.

JLG19 · 09/10/2018 08:20

Thinking of you today BearFlowers

KipperTheFrog · 09/10/2018 08:21

Late to this, have read all your updates. So sorry you are going through this. [Flowers] I'm a NICU and CHD mum, but not as severe as you. Will be keeping you in my thoughts. I've heard good things about Leeds paediatric cardiology so I'm sure you'll all be well looked after.