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?

Awww, he's gorgeous!
I'm loving the beads and book and knitted square etc when DS was in nicu we got a hat! That was it

Be prepared for him to switch between ICU and HDU as it's common for them to do that with them being so closely and vigilantly monitored. Every time we went to see DS he was in a different dependency room depending on what sort of night he'd had.

I was hoping there would be another picture when I checked!

I have just read your whole thread Boo and it has made me well up! Teddy is absolutely beautiful I hope you and him continue to do well. He’s such a fighter.

I struggled with hand expressing as well, it was so weird to essentially be milked 😂 but I hope it gets easier for you xx

Jings he's just a wee cracker!

Love the forehead wrinkles and his very wise wee eyes.

Well done OP, family and Teddy- you guys are done brilliant!

Gorgeous boy You are doing wondefully Boo.

@Knitwit101 both terms ate accepted for the plural and I know of 2 mums that receive one for their babies and were so moved. Thank you

He really is extremely beautiful and will be loving that dummy, well done!

Keep going with expressing, you'll know more than me cos it's been years since I've done it, but eat and drink lots and try and smell him and visualise him being hungry. Good luck!

He's an Old Soul, one of those wise ones.

Glad to hear he’s doing as well as possible. Beautiful eyes by the way!

@Knitwit101 in more severe cases of HLHS the 1st surgery is performed before the ductus arteriosus closes, so surgery would generally be at 2 days old.

The way that it was explained to me (years ago) was that during pregnancy the ductus arteriosus is open because there is no need for the heart to pump blood around the body, once the baby is born and begins to breathe the heart needs to pump blood both around the body and to the lungs (right heart pumps deoxygenated blood to the lungs to be oxygenated and then back to the left atrium so the the left heart can pump it around the rest of the body) in cases of HLHS oxygenated blood goes from the lungs to the left Atrium but cannot enter the left atrium once the ductus arteriosus closes, without surgery this heart condition is fatal. So in our case, (severely enlarged Aorta, severely narrowed Pulmonary Artery, heart in wrong place facing wrong way, no left Ventricle and miniscule left Atrium) Surgery would have had to have been performed at 2 days old regardless of weight, because his chances of survival past that were 0% and even with surgery his chances of survival was minimal.

*Obviously this is a quick explanation and surgical procedures may have changed slightly over the years.

He's beautiful. Congratulations xx

What a lovely update, sounds like you & Teddy are doing wonderfully. Keep being positive & I hope he keeps growing well to get stronger.

He's beautiful

Hi! Teddy has moved from ICU to HD for now so that's good. Cardiac Nurse Specialist came down to meet him and say hello. It was nice to see her as we'd seen her through my antenatal appointments too. No real updates but she's going to put her ears to the ground and see what she can find out.
He loves his dummy - nurse says he's starting to realise he's "hungry". Not literally as obviously the drips are taking care of it but he wants to suck and he knows he should be getting something for his efforts so it's a shame I can't breast feed really.
@Knitwit101 ahh the octopuses are lovely! So cute. I keep holding mine and putting it in his cot so that it smells like me.
I think it's a good sign - as @HaveYouSeentheWritingontheWall says they usually do the surgeries ASAP as the duct can close. He's been put on a medication that keeps that duct open and he's doing well with it on the lowest dose. If they had to increase the dose it can start to affect breathing and cause apnea so it's good he's responding well to the lower dose.
I think as long as they feel he's stable enough to wait it's a good sign.
Hand expression has moved on to electric pump which I prefer! Managed to get 10ml off at 12 today!

Lovely update. Never met you irl but think of you and teddy so many times each day.

Hooray for 10mls!

Thank you so much for the update Boo, I keep checking in, he is a wee gorge and glad things are stable for now. Any sign of you being discharged yet?

@booandbumpp that's a good update, we were not told of medication that could keep the ductus arteriosus open so that is probably a medical advancement since 2001/2002. Teddy is beautiful and I hope that everything continues to go as planned, I hope you are taking care of yourself too. Much love to you all

He is just too adorable wrapped in his blankets and that adorable hat. Awesome job with the 10ml!!! Hugs and love to all!!

Oh and please start a new thread before this one fills up, so you can keep us all updated with more beautiful pictures of Teddy.

I also think that donating items to NICU is a grand idea

Oh what beautiful pictures and what a beautiful boy ❤️

We are all with you

Gorgeous. And fab on the expressing front

Well done on expressing & congratulations on your beautiful boy 😍

You're doing great. Love the photos. He's adorable.

Brilliant that he’s graduated to HD! He looks so snuggly in all his blankets, and just too cute. Well done on the expressing you’re doing fabulously!

That's so great he's stable enough to be transferred. What a tough little cookie! He's so so cute. You're doing amazingly, your positive attitude is amazing ❤️