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Old Jan 8th, 2016, 15:07 PM   31
Bumblebee2408
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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



 
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Old Jan 8th, 2016, 16:52 PM   32
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



 
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Old Jan 11th, 2016, 15:07 PM   33
Bumblebee2408
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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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Old Jan 17th, 2016, 15:14 PM   34
Mrs G
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Hey, how's things? Xx



 
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Old Jan 19th, 2016, 04:57 AM   35
Bumblebee2408
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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



 
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Old Jan 20th, 2016, 03:39 AM   36
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



 
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Old Jan 22nd, 2016, 15:53 PM   37
Bumblebee2408
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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



 
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Old Jan 29th, 2016, 10:38 AM   38
Mrs G
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Gosh that all sounds so technical for such a little soul. I hope you've had s good week. Any updates?
Xx



 
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Old Feb 4th, 2016, 15:59 PM   39
Mrs G
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Hey,hope you guys are ok. Xx



 
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Old Feb 8th, 2016, 10:37 AM   40
Bumblebee2408
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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



 
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