We are in hospital

[Hope81]

Glad to hear she is doing a little better.
A flexicup is quite interesting actually. Often used for elderly or disabled children but I can see how it may help her drink as its sth totally new for her.
Practically is an open cup with no top so she can see what's in there and it's easy to squish and change shape to fit her mouth or a bigger mouth. Kids usually find it quite fun (the older ones that is) and they love it.
Good luck, I hope they come with sown ideas to help her a little more.

 

[sazz]

Hun I've just read your thread. Your doing so well through all of this. You'll get there with her. Shes such s cutie.

I hope that things get better and the flexicup works. Big hugs xx

Sent from my GT-N7105 using Tapatalk 2

 

[tweetyfoo]

Hi Gayle

You should feel proud of 16oz! Its a big increase from 10! DG will blow your socks off you wait and see,

My experience of the SALT and dietician have been very positive, so I have high hopes for you! Good luxk today

We definitely have to have a Glasgow meet! We actually have a sunny day here today!

 

[Lolly85x]

Hope it's going well Gayle x

 

[tweetyfoo]

How did it go today sweetie?

 

[Gayle30]

Sorry for not updating girls. Last night was a struggle. She took 9oz yesterday but was quite sick. Our appoitnment was 2pm. By that point she had had 3oz and kept refusing in front of them. The salt recons her reflux is causing her so much pain she cant drink. They phoned our consultant to see if ahe can be put on a high dose of omeprazole but she wasnt there so I am still waiting to hear.
The salt said I need to work on my anxiety. She said if she wont drink she wont drink. This is all veey well for her to say but she cant hear my babies tummy rumbling. It goes against all my mummy instinct to stop trying to offer her milk. I actually dont think thats possible. If she was able to ask for milk then maybe a different story but she doesn't. So if I dont offer she wont get. The salt seemed to think ng is the way forward until we get her reflux under control but that's up to the conaultant.

Im so upset. They probably think im a shit mum and I need to stop worrying. We have hardly had any wet nappies so she will dehydrate. Im upset too cause everyone says stupid things like she's thriving. How long will she thrive on 9oz tho. This is bloody awful and i feel so alone. Xxx

tapatalking

 

[tweetyfoo]

Awww Gayle sweetie you are in such a difficult position

Id be inclined to agree that ng is the way forward temporarily, because your anxiety levels will get lower as you know she is being fed.

the doctors really need to help you more

 

[KarenC]

I'm sorry you feel alone, hun. I can only offer hugs, I'm afraid. You're being really strong - don't let anyone make you feel like a bad mummy because they can't be further from the truth xxx

 

[Gayle30]

Im taking her back in today. They must help her. Shes asleep on me now and her belly is rumbling. Its not fair. Tried the salt, dietician and consultant this morning since 8.30am and nobody is available. So I feel like bundling her into the pram and walking up there I hqte the thought of the ng tube as she will only want to pull it out but at the same time i want her to have it to allow her to het better. I really do feel awful about all this. Why do they think I should stop worrying? She used to take 32-35oz and would at least try food. Now shes fighting 9oz and being more sick. Which part of that is ok to let happen? Surely its not. And if it is well maybe im not fit to be a mother. Maybe Im not cut out for this. I feel like im being made to feel inadeqate for worrying. Nobody realises what this is like. The longer it goes on the worse its getting as well xx

tapatalking

 

[tweetyfoo]

Massive hugs Gayle

ABout the NG tube - its only a short term stop gap solution to get you both back on your feet!

Imagine not having to worry about her being dehydrated or hungry? Yes you will still have obstacles to overcome but that will be a big weight off. I would push for the tube if I were you, because I wouldn't be happy at the level of milk she is taking - and I think the first concern is to get her "eating"

Then I think you need to push (not that you aren't) for further investigations to make sure there is nothing more sinister going on that is causing her pain

I really really pray that things get better for you soon, as I'm so worried about you. You aren't getting a chance to properly enjoy her and thats not fair when there is resources out there to help you, they just wont bloody give you them!

 

[babyem]

I agree with Tweety about the NG tube. It would only be temporary and she may be curious as to what it is, but its unlikely she would pull it out. X

tapatalking x

 

[Gayle30]

Thank you tweety and karen. You girls help me so much. I really dont think im coping well. Im just so tired of fighting daisy and tired of asking for help but getting nowhere. Ive now rang the ward and was in tears. Ive told them shes coming in but they need the registrar to phone me back. Im packing a bag and I need a shower. All These things take me ages cause im on my own as usual. Stewart is working. Ive woke every hour to check on her and as a result im knackered and really not feeling physically well.

Please tell me im not alone in thinking 9oz iw acceptable, especially to drop to from 30 odd? Rhe ng tube is the only option but what do we do about the bottle fear? Just hope they call me soon. Eveey hour that goes by feels like forever.

tapatalking

 

[linxminx21]

IV been following your story on here with your baby girl and you are not a bad mum for worrying... It makes you a better one for doing so! I'm a worrier and id be fuming if a dr had told me not to worry about my child! I hope and pray you get answers soon, its physically and emotionally draining caring for a poorly baby... The Drs should understand and help you as much as they can! Big big hugs, and please try to stop doubting yourself as a mother... Your amazing to still be standing after all this!!!

 

[babyem]

I can only assume that if they do the ng, when they decide to remove it they may not look at bottles as an option and try find other solutions iykwim?

Youre doing so well, dont doubt yourself one bit! X

tapatalking x

 

[tweetyfoo]

Gayle while she has Ng tube in you can keep working in the bottles but be more relaxed about it (you can still bottle feed if Ng tube is in)

If you do get one ... Make sure you ask for the teddy beat IV stickers (kinder on the skin) and some Appeal to take it off and change it.




Please excuse any typos from my fat fingers!
Tapatalk madness!

 

[Spammy]

Oh honey you must be so fed up. I'm so sorry your going through all this. I keep following this and rooting that little daisy grace gets sorted soon. It must be breaking your heart

Just wanted to send all my love x

 

[Little_angel]

Sending love and hugs to you and your LO. It must be heartbreaking, I can only imagine. It's completely normal to worry about your little girl xxx

 

[Lynds77]

Gayle, is there anything you can think of that she might take from a bottle, apart from milk?

would she drink water? or sweet juice (I know your not supposed to, but screw that for now)

I just thought whilst she is getting milk from a tube, she could maybe get water from a bottle, so she then realises slowly that the bottle no longer causes her pain. Then eventually she may take her milk from a bottle again?

or milk from a doidy cup?

i am lucky in that Freya seems to know its the milk that causes the pain. When she is refusing her milk, she will still take some water from a bottle.

 

[FirstBabyEek]

So sorry Hun that you are going through this, can't begin to imagine how upsetting it must be. Sending you loads of hugs xx

 

[babyem]

Dont worry too much about the bottle, SALT are very good at finding various different ways of overcoming feeding problems. X

tapatalking x