So terrified. Emergency section at 25w

[Titchypanda]

Today I've been admitted to hospital and told my baby will need to be delivered in next 24 hours due to poor growth and almost no waters. Baby is only measuring at 1lb 2oz with a less than 50% chance of survival. My husband and I are devastated and terrified. Has anyone been in a similar situation?

Hi All, Bea is now a whopping 4 months old! Where has that time gone?! She now weighs 6lb15oz!

It's been a real struggle this past week as she has been so unsettled. The antibiotics really upset her tummy, so unless she was lying on her tummy on myself, her daddy or a nurse, she was screaming.

After a good chat with the weekend consultant, he agreed 3 hourly feeding was the way to go and to keep her ng tube. She was struggling with the volume of milk. The vomiting has mostly stopped since implementing this. Her breathing has improved by alternating tube and bottles (if she wants them).

She has developed an aversion to things near the back of her mouth and throat and is refusing bottles.

Today I had a long chat to this week's consultant. She has set her oxygen at 0.75L as she copes better on it and has reduced her feeds a little as she is gaining weight well so doesn't need such a high volume. The SALT team have come to work with us too. Today the therapist watched and listened to her feed. She's happy there isn't a physiological reason for problems. Because of the flinching and gagging, they think it's possibly due to the trauma of intubation for her ROP surgery and she is frightened and associated things negatively. We have to make feeds a positive thing and if she doesn't want bottle, don't push her, tube feed her and try next time. So they are letting me check tube placement and pH, prepare feeds and choose how I feed her.

Since her antibiotics have finished, she's seemed like her cheeky self and more settled. Home oxygen is being installed this week. The plan is to work towards discharge on 0.8L oxygen at home and possible tube feeding at home.

Oh my goodness Bea 6lb 15oz wow and 4 months old

Does she suck her dummy while she is tube fed by NG?

DS had a OG and had the dummy at same time cos he had CPAP in his nose

I know this is silly question but how do they install oxygen to your home? Or is it large gas canister upstairs and down or more involved than that?

I know if you are out and about you can take tank on backpack

Good luck with her feeding and O2

Hi Kanga!

We don't know if will be a concentrator or canisters yet.

The nurse just told me she threw up after her feed. They think it's the sodium making her sick this time.

She will have dummy sometimes. We try and encourage that when she's awake and tube feeding. Once she realises whatever is near her mouth is small and doesn't go in far, she calms down. She flinches when her mouth is touched and gags. With her bottles I brush it near her lips, then on them, then drop some milk on them. If she is ok with that she will go for bottle herself. If not, I wait and try again. If I've tried a few and she's not happy, then I will tube feed her.

What do you mean the sodium? Do you mean salt in the formula or something else?

Have they tried different nipples with her?

She is sort of frightened of things at back of her throat or mouth then isn't she?

Poor Bea, I guess patience is the only way isn't it?

Because of the amount of diuretics she's on, she is given sodium to replace what she loses. Most of babies hate it and are sick.

The SALT lady is happy her bottles are the right ones for her. This is frustrating as for weeks some of the nurses are saying she doesn't like them and won't use them. We tried loads of different ones, only to end up back on the ones I originally chose. The lack of bottle consistency hasn't helped her. She's a slow feeder and the staff don't have half an hour to sit and do that, so it's difficult. She feeds really well from these bottles too and always has, it just takes a long time. She doesn't like being rushed!

Has she ever been tried with an open cup? I know she small still but they do use them on newborns + sometimes and we had success at home. Think it was the medela cups

These . I think most hospitals might have www.medela.co.uk/breastfeeding-professionals/products/feeding/babycup

Thanks rubber duck!

Art, they only use those on BF babies at our unit. She's bottle fed so they won't. We have to work on her not flinching, gagging and tensing up when things are near her mouth.

Would something like a small teether help? She could get used to concept of something near lips, but not in mouth properly? Not sure if hospital would recommend or not. But hevea brand natural latex if interested

Titchy

Thank you for explaining about sodium - pity they can't give it in alternative way

How is Bea doing now?

Hope you guys all have a good weekend

Hi, we had a second discharge date, but that's been postponed as they are now giving her another course of steroids.

Oh dear - are the steroids for her lungs?

Bloody hell titchy you are really going through it aren't you?
I don't really have any thing helpful to add, I really feel for Bea and you and yours, such an unfair rollercoaster you are on.
I truly hope things take a steady turn for the better soon.
Little Bea is obviously a tough nut chip off the old block and she has a wonderful mother in her corner, that is alot.

Sending much virtual love and strength to you

Kanga, yeah, they feel that she might feed better if her lungs are less strained and 0.8L is quite high for a baby to come home on.

It's been a rough day. Loads of feeding problems with information not being correctly passed on and not having correct equipment. To top it off, Bea had the men jab that they couldn't do a couple of days ago and the rsv jab. We didn't leave till well gone 11pm. We had a hungry baby with roid rage who was cranky from jabs.

Oh poor bea. That men b Jab does knock them around a bit. Hope the steroids work and you can get to taking her home soon

Hope the steroids help her with the oxygen levels - is it a premmie version of prednisone?

If so, that will probably make her hungry too, well it did for DS as a toddler (it also made him be like he had had smarties for brekkie, lunch and tea)

Hopefully today will be a good day and she will have staff that know what is happening, when and using what etc

Poor Bea, and poor you and Mr Titchy! Really hope that today is easier on all of you

Just checking in to see how your weekend went?

I haven't been on for a while, but just wanted to say that my girls were on sodium and diuretics until 17 weeks old - getting it into them was grim!
They also had 2 courses of Dexamethazone (steriods) for their breathing so they could come home on low flow oxygen at 0.3l

We have large tanks up and down stairs, plus little ones in backpacks for going out. They are on a next day order system.

One of my twins came off oxygen yesterday, and the other is due off in 2 or 3 weeks - they are 10 months actual, 7 months corrected.

Please message me if you need to chat re oxygen at home/steroids etc

Still thinking of Bea and the Titchy family

Really hoping you re ok Titchy x

How's Bea doing now Titchy?

Hope the steroids have helped Bea's oxygen levels

Hi everyone, Bea is still in SCBU on 0.8L. They did get the level down to 0.5L but she couldn't cope and ended back up at 0.8L again. They were going to try weaning it again but something has clicked with her feeding and she's done 2 1/2 days with no ng feeds currently, so they want to see if she can continue with her bottles. They had moved to alternate days with steroids but her sats were really poor on the off day, so they are debating whether to go back onto daily dose. We had another potential discharge postponed, but we're hoping soon she can come home. She's 140 days old now and weighs 7lb4oz.

What a long and winding road for the titchy family.