LaughOutLoud
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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
Anyone else with a TOF baby??
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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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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
LaughOutLoud
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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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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
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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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
No feeds for a while now.
She's stumped everyone
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
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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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
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
LaughOutLoud
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I hope they can give you some answers soon. Take care x
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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
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
LaughOutLoud
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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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I do we read children's books and harry Potter as well.
We sing she's got toys and we play as well.
Xxx
We sing she's got toys and we play as well.
Xxx
Mrs G
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Hi
Ah poor wee thing. It's so frustrating but at least they seem to be finding out what's up. Will they let her go home on oxygen? A lot of babies in Southampton nicu were allowed out still on it.
How's her weight? We've found that tommy is getting much better as he's getting bigger. I suppose everything, oesophagus and trachea included, grows too.
I used to read and sing with Tommy in Hospital too. Makes it seem a lute more normal.
Hope you're doing ok. Keeping everything crossed for you.
Xx
Ah poor wee thing. It's so frustrating but at least they seem to be finding out what's up. Will they let her go home on oxygen? A lot of babies in Southampton nicu were allowed out still on it.
How's her weight? We've found that tommy is getting much better as he's getting bigger. I suppose everything, oesophagus and trachea included, grows too.
I used to read and sing with Tommy in Hospital too. Makes it seem a lute more normal.
Hope you're doing ok. Keeping everything crossed for you.
Xx
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No they don't want her to leave with oxygen so not sure what the plan is from here as yet. She 10lb+ so not big for 15 weeks but a fair size for her xxx
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Frustrating still here she was meant to going for a gastrostomy today.
However yesterday the decided they wanted to do tests for reflux to see if she needs a fundoplication. Even though 2 weeks ago they did all this and decided she didn't!!
I'm furious. She's 16 weeks now and wanting get to be more active but there's no bed at the children's and I can only do do much with her to keep her active.
Frustrated
However yesterday the decided they wanted to do tests for reflux to see if she needs a fundoplication. Even though 2 weeks ago they did all this and decided she didn't!!
I'm furious. She's 16 weeks now and wanting get to be more active but there's no bed at the children's and I can only do do much with her to keep her active.
Frustrated
Mrs G
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Hi
Oh you poor thing. It's so frustrating. I found I had to be quite pushy and basically resorted to pestering the Dr every time they came on the ward!
Have they said anything else? It must be so hard not having her home.
Xxx
Oh you poor thing. It's so frustrating. I found I had to be quite pushy and basically resorted to pestering the Dr every time they came on the ward!
Have they said anything else? It must be so hard not having her home.
Xxx
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I hate it she's 16 weeks old she should be home trying to roll and play and she isn't.
I miss her brother like you wouldn't believe.
She's got to have pH tests done soon then we're looking at a gastrostomy and a fundoplication to relieve reflux and be able to feed her. But that's based on those results which we have no set date for yet.
She also has bad tracheomalacia so they're thinking of doing an aeortopexy which is where they use the aeorta and attach it to the sternum (bone in your chest) to pull open her airway.
Very scary op but with good out comes so we'll see what the results bring xx
I miss her brother like you wouldn't believe.
She's got to have pH tests done soon then we're looking at a gastrostomy and a fundoplication to relieve reflux and be able to feed her. But that's based on those results which we have no set date for yet.
She also has bad tracheomalacia so they're thinking of doing an aeortopexy which is where they use the aeorta and attach it to the sternum (bone in your chest) to pull open her airway.
Very scary op but with good out comes so we'll see what the results bring xx
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Hi so sorry. Jessica got a cold and we ended up in isolation for a few days. Then one of her ops got cancelled because of that.... now just to ice the cake.....
Today she pulled her feeding tube out. The nurses couldn't fit a new one. The surgeons couldn't either after 10 attempts and a throughly upset screaming little girl. They decided to put a canula in and take her to surgery to do the surgery they cancelled due to her cold (which she's over now). It took one Dr 3 attempts at a canula before calling the registrar to come do it.
They can't fit her in for surgery until tomorrow now.... so she's been put on a drip for fluids to keep her full and tomorrow she'll have a dilatation and a new tube put in and hopefully the pH study as well xx
Today she pulled her feeding tube out. The nurses couldn't fit a new one. The surgeons couldn't either after 10 attempts and a throughly upset screaming little girl. They decided to put a canula in and take her to surgery to do the surgery they cancelled due to her cold (which she's over now). It took one Dr 3 attempts at a canula before calling the registrar to come do it.
They can't fit her in for surgery until tomorrow now.... so she's been put on a drip for fluids to keep her full and tomorrow she'll have a dilatation and a new tube put in and hopefully the pH study as well xx
