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Premature birth

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Original poster

I'm giving birth to a very poorly 29 weeker tomorrow, any advice?

556 replies

Alb1 · 01/04/2017 19:47

I won't go into too much detail as it can be a little quiet on here and I don't want to pour my heart out to no replies Blush

Il be exactly 29 weeks tomorrow, the baby is very poorly and it's been made clear her chances arnt great if they deliver her. But we also don't have any options to help her if we leave her in utero, so she's clearly going to get more sick and die anyway. The doctors arnt giving an opinion of what they think is best so it's all been left down to us, although they said if I was past 32 weeks they'd deliver. So we feel we need to deliver as surly even a tiny tiny chance is better than no chance. Our last baby was stillborn to the same condition (we were told these things don't happen twice, we had absolutely no idea, and nither did the doctors, that it could reoccur) but we didn't find out until hours before she died last time so we couldn't do anything, this time we've been trying for over 4 weeks and have exhausted all options other than delivery.

Don't no what advice I'm looking for, has anyone else had a baby against the odds and how did it go? I think with the doctors not being able to offer an opinion I want to feel like I'm not making a selfish or wrong decision somehow Confused

OP posts:
namechangedtoday15 · 21/04/2017 20:27

Fab news. On the expressing front, can you get a little screen, you know those old fashioned curtain things on wheels? Or anything really that screens you off a little if you feel uncomfortable expressing where someone might see. Or even put a big sweatshirt on over the top / use muslins?
Its really important to keep your supply up by regular expressing if you want to feed so see if you can find a solution.

CongratulationsFlowers

Original poster
Alb1 · 21/04/2017 20:37

Thanks for the advice everyone, they do have screens, it's just were we are in the room it's still not private, I just need to get used to it though. Think I was just having a bad morning, the 28th of this month will be a year since my last baby passed away (she was born a few days after her death) so I'm getting extra emotional at the minute!

I struggle to keep up with expressing anyway, they say to do it 8-10 times a day but with all the traveling and juggling my other son etc I just don't get the time. I'm determined to keep up with it though, I just need to toughen up abit and do it by the cot side Smile

OP posts:
SirVixofVixHall · 21/04/2017 20:41

I am so delighted for you that your little baby is doing so well.

peeriebear · 21/04/2017 22:48

I just clicked on this in Active threads and wanted to say how pleased, relieved and happy I am for you and your little wriggly baby :) one day the NICU will be a memory and you will have have her home with your family. Hugs xxx

imjessie · 22/04/2017 13:47

Are you ' living ' on the ward? I was only allowed to be with my baby in visiting hours when he was in scbu for a month .. I wonder why rules are different in different hospitals ? He was a 33 weeker and poorly so it wasn't straight forward . It turned out due to having to look after older dd and my husband being able to drive me around work ( I had c section so couldn't drive ) that I only saw him for an hour ish a day . Often when we got there they were doing doctors rounds and due to privacy we all got evicted for up to 2 hours when we were there too!! 🙄

Original poster
Alb1 · 22/04/2017 15:15

That sounds horrible jessie no I'm not living on the ward, at the bigger hospital we had a room in a Ronald McDonald style house, but there's nothing here like that. Parent visiting is 24 hours a day, but with living 40 mins away and having to sort child care I can't be here as often as I'd like, DH works very long hours.

I've had a c-section but I've started driving again as no other choice.

Our lovely baby is almost entirely off oxygen now, and has gained 90g in the last 2 days which is a relief Smile crazy to think she's not even due for 8 weeks!

OP posts:
KnockMeDown · 22/04/2017 15:17

Sounds like she's going from strength to strength - does she have a name yet?

imjessie · 22/04/2017 19:49

I did try to drive but I was in so much pain I had to stop .. glad your baby is doing well x

LuchiMangsho · 24/04/2017 14:04

Fab that she's off oxygen. I also second using a breastfeeding cover. Do carry on expressing (this is me giving you a gentle nudge). I made a little timetable for myself and reminded myself that if he was home and shouting for food I wouldn't have time to make a cup of tea and sit down before expressing. So actually this was easier. (It's not...it was my rationalisation to give myself a kick up the rear). I managed 8 on most days. I would express just before sleeping and once overnight.
If she's almost off oxygen, is there a nearer more local hospital they are going to move her to? I found the commute (I also have another son) much easier when we were in our Level 1 unit.

Glossolalia · 24/04/2017 22:44

Great news, OP.

Mrsknackered · 06/05/2017 14:08

Hey OP,
How's it all going?

mymatemax · 06/05/2017 14:23

Alb, congratulations. I was in a very similar situation to you 14 years ago. After a dilemma about if we should deliver at 28 wks to give him a chance. Like you we delivered & he made it. I remember expressing for hours with just a photo of dis to look at only to get a few ml each time. In the end I was so stressed trying to express on top of juggling another child a long journey to the hospital etc etc it was awful. The paed basically told me that it was ok to stop, he had to go on to specialist prem milk anyway. But I can so remember those screens and bloody pumping machines. Don't forget to take care of yourself through all this.

Original poster
Alb1 · 06/05/2017 14:38

Thanks mymate

All is going well, fully off oxygen now, doing alternative bottle and tube feeds. Expressed breast milk in the bottles as there's not much support for breast feeding and I've found that too stressful, but as I'm expressing il just see if we can try and pick up breast feeding once were home.

Scary moment yesterday when she went completely blue and floppy for longer than ever before (probably about 15 seconds but it felt like forever) so I'm having a wobble today, but she's doing brilliantly Smile no word of a home date yet but she's not due for 6 weeks and 1 day so we are probably a while away from that yet. Things couldn't be going better though really, I keep waiting for something to go wrong and fling us back into the hell we were in when I wrote my OP, so im just keeping quiet and hoping it doesn't happen... still terrified though

OP posts:
purpleviolet1 · 06/05/2017 14:42

So glad Alb, been thinking of you and reading your updates x

LuchiMangsho · 06/05/2017 19:40

Lovely news. Ask if you can breast feed on the Unit. Even if you can have a go with someone to check your latch it's better than nothing. (And might help when you come home). But your daughter is a real fighter. Bottle feeds and no oxygen at 33/34 weeks is great. We came home at 36. In the main this was their checklist:

  1. No desats or bradys for a significant portion of time.
  2. Bottle and breast fed consistently over 3-4 days before taking the NG tube out.
  3. Off most medication especially caffeine for apneas. We went home on sytron (iron) and vitamin D.
  4. Consistent weight gain.

We had two babies with heart issues in our Unit and they were sent to a specialist hospital for scans etc but both went home around 38/39 weeks with further follow up scans scheduled post discharge.

Original poster
Alb1 · 06/05/2017 20:22

She had another major desat this afternoon, really blue, and they had to give her a tiny bit of oxygen, it's so scary! the desats seem to have got less common but more severe when she has them, it's horrible.

She's not on caffeine due to the heart condition, and feeding is going well so I think it'll just be the desats that hold us back at the minute. I'm in no rush though, I'd like her to still be in when they do the vaccinations in 25 days.

Your right, il wait until there's a supportive nurse on (some are less comfortable with boobs than others) and then ask to try it. They happily allow breast feeding but I'm very nervous about it and it hurts, even expressing hurts, I think I have a strong let down sensation, so I'm too unconfident to do it unless there's someone particularly supportive there, it's hard to no how to manoeuvre such a small baby aswell, still scared of breaking her! Hopefully it's something we will pick up at some point, but she's on 100% my breast milk regardless which is the main thing

OP posts:
Deranger01 · 06/05/2017 20:39

Glad to hear things are still going well - have you phoned breastfeeding charities for help? La leche league for example - I had dc1 in the US and I had a la leche league bf expert who said you could learn a baby of pretty much any age to breast feed with enough skin to skin contact and learning to root as they smell the milk. I've no idea if it works in reality but I'm sure there are some experts out there that can help you when you get there

angryladyboobs · 06/05/2017 20:40

Just read through your entire post, so glad that you and your baby are doing well!

Deranger01 · 06/05/2017 20:43

As for the feeling scared of breaking her, I remember feeling that way too, fingers crossed for you both. I don't think it matters at all how you feed the little one, I just wanted to post the above to say if the nurses aren't terribly helpful, there is more expert bf help out there. I'm sure my norks have been seen by many on several continents, including many friends when I couldn't get dd to latch right and had to have my whole boob out trying to figure out the best angle!

LuchiMangsho · 07/05/2017 07:17

I bought a breastfeeding pillow to support him. Week 29-33 he would suck and lick. 5 mins was an excellent feed. Got a bit better around Week 35. Has been fine at home. It's also easier at home when you can sit in bed and feed and have a cup of tea.
Are the desats feeding associated?
And yes yes to the vaccination in hospital. They have some paracetamol calculated to the right quantity through the NG and he was fairly comfortable.

BringMeTea123 · 09/05/2017 14:06

Just read through your post. Just wanted to say I'm so glad your baby girl is doing well! Please keep us updated, it's lovely hearing how well she doing!

Original poster
Alb1 · 11/05/2017 08:27

DDs sats monitor was turned off yesterday, so she just has the feeding tube to loose now! The nurses still keep saying to aim for her due date (5 and a half weeks away) but I suspect they are lying now! The only requirement left to meet is fully without tube for 48 hours and semi demand feeding (so just not going longer than 5 hours) and currently she has 4 bottles and 2 tubes, finishing 3 of the bottles fully on average, she already wakes for all her feeds though. We are getting scarily close!

OP posts:
BringMeTea123 · 11/05/2017 08:42

Aww that's great news. So pleased for you! It sounds like she's doing amazingly well! 💗

DancingLedge · 11/05/2017 08:56
Flowers
Nottsangel2015 · 11/05/2017 09:05

Just read your thread what amazing news! I had my daughter at 30 weeks nearly two years ago and they kept telling us aim for her due date and we actually came home 4 weeks before! They started hinting at it about a week before. Fingers crossed for you it won't be long xx