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

[booandbumpp]

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?

Welcome little one, gorgeous photos of Teddy.

Many congratulations booandbumpp and DP

He really is gorgeous. He weighs the same as I did full term Boo! I'm glad you're leaning on each other, it's apparently much easier if you're supportive of each other.

Please keep us involved in your journey, there's a lot of us thinking of you and sending positive thoughts.

Such a sweet boy. That’s really lovely about the Nicu donations.

Lovely update and if you did start a blog, I’d definitely be interested to follow. The last pic you posted reminded me of DS2 who spent two weeks in NICU although for different reasons to Teddy. But he had that same dinky look about him - tiny but perfectly formed, absolutely adorable 💝

Boo he is beautiful and you are showing so much strength it’s taking my breath away. Wishing you a stable night for beautiful Teddy.

Another stong and positive post OP. You are doing a stellar job.

If you do decide to start a blog, I'd love to read. You write so well and I get such warmth and calmness from your posts (I know the future is uncertain but it's good to start from a place of calm!!)

Our little one was and still is a tubie. She is weaning now but still has her NG tube. Soon you won't even notice the tubes. You adapt so quickly....

Your neonatal ward sounds amazing. We weren't allowed to stay over and only grandparents could visit (my siblings and my other children weren't allowed). It's a different world, but again you adapt.

Keep doing what you are doing Boo. X

He’s so cute. My full term boy was 2.5! I have a lot of expressing advice. My 26 weeker came home breastfeeding and EBM and fed for a year. So if you are hand expressing do little and often. No more than 7-8 mins per breast, then back to the other breast and switch and stop. Try again in 90 mins. Once there is milk rather than colostrum which might take a few days ask them for their hospital pump. The medela which most NICUs use has a stimulating function and then one to actually get milk. I would express as often as you can. You are trying to trick your body into believing that a newborn is feeding which means they aren’t feeding 8 times a day (only the most dream like newborns do that). To begin with aim for 10-12 with at least 2 overnight. But and I totally understand if you would rather spend time with him than at the pump. If he’s in HDU they may be able to bring the pump bedside as well so you can look at him while you pump. Drink lots of water, lots of tea, and please give your lovely boy lots of kisses from his aunties on the internet. We are thinking of him and you.
PS Do you have tiny baby clothes for him? JoJo Maman Bebe and M&S do the loveliest range of preemie/tiny baby clothes. I donated ours afterwards to our NICU so can’t offer ours but buying those clothes made me feel ‘normal.’

I've been keeping tabs on you all and send hugs and lots of love especially to Teddy.

@boo hope the night has gone well.
Teddy is scrumptious, such a gorgeous little face.
My little girl is fascinated by him she loves his little hat too. She said she hopes Teddy is doing well

Love and strength 💐

Congratulations Boo!
I don’t really know what to say as I really don’t know what you must be going through as I haven’t ever experienced this.
As others have said, try and make sure you are giving yourself time to recover. It’s easy for parents to forget about ourselves when you are in situations where our young babies need us. I’m sure the hospital are looking after you all
and

Hope the consultants meeting goes OK today Boo and you've had a good night's rest

Congratulations @booandbumpp your gorgeous little boy Teddy is so precious & so lucky to have such a wonderfully strong special mummy & daddy. I hope today’s meetings go ok. Sending you love & hugs

Hope the meeting went ok today 

Oh my gosh congratulations
Tears in my eyes reading the thread
He’s beautiful

You’re both doing brilliantly xx

Hello lovelies!
I got a good look in those big eyes yesterday and thought you might like to see too. I think they're going to be brown like his dad's. He was having a good look around wide awake which was lovely.
Teddy had another stable night, so that's good. He jaundiced so they gave him phototherapy, and now he's off that. The consultant checked his chest which is clear so that is good! He also gave her finger a good old suck when she put sugar water on it to shush him while she was checking him over. We've got him a dummy with her encouragement.
He had cuddles with all grandparents, a great aunty, and me and DP of course. I got my breast feeding pillow from home so we felt a bit more confident holding him.
They had their discussion, and have decided to wait for him to get to 3kgs and then they will make a decision re surgery. I feel ok about it - obviously they think he's stable enough to wait, and I would feel more comfortable with him being bigger and stronger. It could be a few weeks for him to gain to that. The plan could change if his condition deteriorates but for now we wait.
I emailed my cardiac nurse specialist to have a catch up with her tomorrow to see if she can give us more details about what his indicates.
I'm still trying with expressing - DP is having to help me. Fingers cross milk comes in soon as this is very slow going and a bit of a batter on my boobies!
Thank you for the comments they're still keeping me going!

Oh OP he's just gorgeous - you are doing amazingly!!!

He is just gorgeous!! So glad that he’s stable and getting stronger each day. You’re doing well boo, keep up with the expressing and hopefully it will get easier. One day at a time, with lots of !

Darling baby look at those eyes

Glad that he is stable beautiful photo you are doing amazing as well ☺️

He is absolutely gorgeous.
Sending you strength boo

The baby wrinkles! I’d forgotten about baby wrinkles...

Huge congratulations! Teddy is absolutely beautiful and it sounds like he is doing really well. Take care of yourself x

What a little cutey! 😍