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Old Dec 16th, 2015, 08:11 AM   21
LaughOutLoud
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Yes sorry it's been a while again!

This time we have good news.... She had her dilatation last Thursday and was taken off high flow yesterday and since yesterday has also been allowed to try 5ml feeds...... And she has had 7 feeds in total in the last 48 hours (via bottle) and managed it without so much as a cough..... The rest of her feeds have been done down her tubes. SALT team are hoping to come down in the next few days to assess and see where we go from here xxx

That's amazing! So good to hear good news and your LO is doing well. Keep it up guys...slowly but surely! Tk cr x



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Old Dec 16th, 2015, 11:10 AM   22
Bumblebee2408
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Thank you today we've got up to 10ml per feed today. We will be in hospital for a few more weeks yet but these baby steps are good progress xxx



 
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Old Dec 17th, 2015, 15:28 PM   23
LaughOutLoud
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Thank you today we've got up to 10ml per feed today. We will be in hospital for a few more weeks yet but these baby steps are good progress xxx
Such great news!! Bless her little soul! My DD recovered very slowly too...everything had to be done so slowly and gradually but that's what suited her. She will get there soon and if I don't get to say this later on I wish you an your family a blessed merry Christmas x



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Old Dec 17th, 2015, 17:22 PM   24
Bumblebee2408
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Thank you Laughoutloud very kind. Merry Christmas to you as well.

She had a little set back this morning where she stopped breathing again. They neo puffed her back round. She's doing well now though and has been fine and still drinking her milk xx



 
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Old Dec 22nd, 2015, 16:54 PM   25
Bumblebee2408
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Well today jessica went for a Videofluoroscopy of her swallowing. She stopped breathing.. needed oxygen to bring her back round. Got close to intubating her. She's fine now though. Couldn't see anything conclusive her food gets stuck but it's not clear why SALT team have asked ENT to come have a look at it and see if they can spot anything.

No feeds for a while now.

She's stumped everyone



 
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Old Jan 4th, 2016, 05:54 AM   26
Mrs G
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Hi
So sorry not been on in a while. I just don't know where the days go.

How's Jessica doing atm? It's so s
Hard when they make such great progress then seem to go back a little. Baby steps and she is going in the right direction. Keeping everything crossed for you.

Xxx



 
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Old Jan 5th, 2016, 18:55 PM   27
Bumblebee2408
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Hi MrsG,

Had yet another dilatation and ENT came to do an MLB (put a camera down her throat) to look for problems as after her xray last time they could see milk getting caught but not why.

So she's been off feeds we're still living by nicu but they are trying to move us to the children's.

We should get results of her MLB tomorrow



 
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Old Jan 6th, 2016, 07:02 AM   28
LaughOutLoud
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I hope they can give you some answers soon. Take care x



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Old Jan 6th, 2016, 19:28 PM   29
Bumblebee2408
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She has quite bad tracheomalacia (a floppy airway) They've put her back on high flow to keep it open and stop the blue do's but we're not sure what the plan is long term from here.

They're thinking of a gastrostomy to feed her when we're finally allowed home. I'm just so frustrated 14 weeks old and we're still in hospital I just want to show her the world xx



 
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Old Jan 7th, 2016, 16:41 PM   30
LaughOutLoud
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Originally Posted by Bumblebee2408 View Post
She has quite bad tracheomalacia (a floppy aitway) They've put her back on high flow to keep it open and stop the blue do's but we're not sure what the plan is long term from here.

They're thinking of a gastrostomy to feed her when we're finally allowed home. I'm just so frustrated 14 weeks old and we're still in hospital I just want to show her the world xx


Awwww, I understand. Do you read to her? Show her pictures an talk to her sitting next to her? Just some things you can do whilst you're there an be able to show her other things whilst you're there x



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