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?

What a beautiful little baby. You are both doing so well op.

Goodness me, what a gorgeous little boy. Very best wishes to you and your lovely little family.

Been without internet a few days, and so glad to come back to this thread to such positive news. He is absolutely gorgeous. Congratulation. Sending all the love and positive vibes

Great update, @boo and My goodness he is absolutely adorable. A veritable superstar
And well done on the expressing front!

He looks snug as a bug in there! Glad to hear he's doing good!
You'll have to start a new thread soon, OP! X

Boo he is just adorable.

So pleased that your first few days seem to be positive...that Teddy seems to be a little warrior, must get it from his mum! Hope you're getting just as much support too and have moments for yourself. Sending you and your family much love x

He is so gorgeous..... well done on expressing. I could never manage it so your doing brill!

Glad he's doing so well. We had the opposite issue in a way as my baby's duct wouldn't close & had to closed surgically when he developed pulmonary hypertension.

You're in good hands.

I truly wish you all plenty of baby cuddles. I'll be thinking of you all tonight x

I'm glad the two of you are doing so well. These days are precious. Whatever you can express helps in so many ways. I did get a bit obsessed as it felt like the one thing I (and nobody else) could do when my baby was in special care.

How's little Teddy doing today? 

He's delicious ! Boo you are doing fab!

What a little champ he is! You are doing so well. I found expressing really hard when dd was on NICU, if you can do skin to skin just before you express it might increase a little bit (you're doing brilliantly regardless)

He is absolutely adorable, I have been lurking but supporting you every step of the way.

Please start a new thread soon as this one is filling up and we'd all love to keep up to date with the gorgeous Ted :)

Oh boo he really is beautiful!! Huge congratulations and well done on the expressing too. Every 0.1 mL counts! But equally do not put pressure on yourself to pump/express for him all the time; take time to enjoy cuddles and make sure to take care of you too. Wishing you and your lovely family all the best. Also I am another who would follow your blog if you linked it here!

My heart melted looking at that wee determined face. He is gorgeous!!! xx

Hello! Teddy is fine - he was jaundiced again yesterday so very sleepy all day but another night one phototherapy and he was eyes open this morning so that was nice.
We're getting to do all his cares as well as mouth care using my breast milk so that is good - I've asked if they can use it to soothe him with his dummy instead of the sugar water they were using which they've said they will.
Sorry for another group but figured easier and everyone else might not want all updates.
Cardiology consultant came to see us yesterday morning for a quick catch up on Tuesdays meeting. They said that if Teddy was a 4kg baby they would attempt biventricular repair now, but as he’s small they want to wait until he gains. If he went into respiratory distress or blood flow to body was bad then they would attempt a hybrid procedure which is a half way post to the first of the single ventricle op but this wouldn’t commit him to the single ventricle. They aren’t going to re discuss him until he’s either big enough or if he becomes unstable. Their concerns are mainly the mitral valve being small and the Hypoplastic aortic arch, but less the left side of the heart. There’s no concern about any of his veins to lungs either and they aren’t going to do a CT as felt that everything was seen as needed for now but will probably do a CT when it comes to the op to get a better picture.
He will stay nil by mouth for now as with cardiac babies there can be issues with blood flow to the gut so they don't want to put added stress on his gut until they've attempted repair.
All in all it's the best news we could hope for. It's potentially a repair, so shouldn't effect life expectancy etc. The op would still be open heart and bypass but (all being well) would be one op not three staged ops. I'm still preparing myself for single ventricle mentally, as I'm very much a prepare for the worst, hope for the best in mindset for now.
I will be starting a blog as much for myself to log his progress and keep me sane. I'll be sure to post a link before this thread fills up!
Thank you for all support, hand holds, love, and kindness you've sent me. It's all received and so much appreciated xxxx

That’s brilliant, I’m cautiously optimistic for you both! How much does he weigh now (just wondering how far to the magic 4kg mark)?
💐 for you and 🐻 for Teddy!

I check daily for Teddy news. I'm so pleased that the news is positive. He is adorable

Gorgeous little baby, really he is. They are lovely photos.
Really pleased he’s doing well. Love to you both ⭐️

Oh OP congratulations! Little Teddy is just beautiful, well done! Much love to you all.

Wishing you all the very best OP. I have been following your thread. My heart baby (not HLHS but I know several little ones with this condition) is now 18 months but I remember those early days in hospital very vividly. It was a terrible, but also weirdly wonderful time as we were just so delighted to be parents!

Here is the 10ml of EBM I got when DS (also a heart baby but not HLHS) was 3 days old. It was sooo frustrating getting such small amounts to start with but you will get there!



I would love to read your blog! He is very sweet bless him.

Oh brilliant - I really am delighted for you that it's looking so positive! He is just adorable. Congratulations