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Old Apr 19th, 2016, 07:15 AM   81
sethsmummy
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I'm not surprised she's a bit stressed bless her. She gets used to one thing and everything seems to flip on her. I hope everything settles down as her body slowly adjusts to the trachy.

How are you doing mumma and how is your other little one doing? Xx



 
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Old Apr 19th, 2016, 16:29 PM   82
Bumblebee2408
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Jess is doing really well she seems much happier since the weekend has ended. Things are finally settling down and causing her less pain now which is good. Still unsure if she'll be able to come off her ventilation through her Tracheostomy or if she'll need it more long term only time will tell.

Jack is well I sobbed leaving him the other day though it's all getting very hard for me now. Leaving him long term is the hardest thing I've ever had to do.... no parent should have to leave there children.



 
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Old Apr 20th, 2016, 10:25 AM   83
sethsmummy
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I'm so sorry Hun. Are you far from him Hun?

So glad to hear that Jess is doing much better xxx



 
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Old Apr 20th, 2016, 16:14 PM   84
Mrs G
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Hi
You guys are really going through it. I hope you're doing ok. What's the update on little lady?

Your comment about people reading this and Jessica being an extreme tof was so self less. Yes there are loads of degrees of tof/oa. Tommy had to have 5 dilatations in 6 weeks and had some scary blueys. I know of some babies who have their construction then never need further treatment. Your little lamb has really had a rough deal and yet you're worried about scaring people with her story. Amazing to be thinking of others at a time like this. Massive hugs to you mama. Xxx



 
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Old Apr 20th, 2016, 18:15 PM   85
Bumblebee2408
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Sethsmummy: We're about an hour and a half's drive from him. But as he's so little it wouldn't be fair to have him here with us. He's very outdoorsy and hates being stuck inside. However we've said if she has a ventillated Trachey in the end then we know she'll be here at least another 6 months. So then we'd obviously bring him. Hoping she won't need it xx

MrsG: Thank you for youreplying kind words. I don't think it's selfless many manyears tof's are straight forward and I've not seen many links on here I don't want people to assume it means having a TOF baby will mean they live in hospital 24/7 it's been the case for us but we're told lots by the hospital that she is quite a rarity (even though there is another baby whose 20 days younger whose in a similar situation. However our 2 girls are the only tof's here and have been since they got here )

Update: Since being really stressed at the end of last week and over the weekend Jessica has done so well. she is much happier and calmer with her Trachey and they've been able to wean some of her sedation and medications down. She's actually had a few smiles today. However we've been told they won't fit a speaking valve for her Trachey until she's older. So we're now in the process of learning basic signing to help her communicate as she grows. It's sad we might not here her laugh or speak until she's older but if it's what she needs to keep going then we're just happy to keep encouraging her.



 
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Old Apr 21st, 2016, 14:56 PM   86
Abii
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I'm so glad to hear that awesome update hun, I've been thinking about you guys alot and I'm glad she's doing better



 
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Old Apr 21st, 2016, 16:21 PM   87
Bumblebee2408
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Thanks Abii.

Today Jessica got to come off her ventilator for a break for 1hr 😄 she did really well. I was sooo proud of her. She managed quite well so we'll see how she gets on I guess over the next week or so xx



 
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Old Apr 22nd, 2016, 03:10 AM   88
Abii
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Originally Posted by Bumblebee2408 View Post
Thanks Abii.

Today Jessica got to come off her ventilator for a break for 1hr 😄 she did really well. I was sooo proud of her. She managed quite well so we'll see how she gets on I guess over the next week or so xx
Aw that's amazing to hear! you have a littler trooper for sure



 
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Old Apr 22nd, 2016, 18:15 PM   89
Bumblebee2408
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We do I'm so proud of my babies jack has been such a big boy while spending loads of time with nanan and grandad while we've been back and forth from the hospital.

Jess has just been such a fighter it's unreal.... everything she does is with a smile and today after a month of not being able to hold her (as she was ventilated through a tube in her nose before the Trachey and was healing for the week after surgery) while she had her ventilation free time we had cuddles and lots of smiles 😃

Happy Momma I just hope she keeps it up and doesn't need the ventilation long term xx



 
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Old Apr 24th, 2016, 07:55 AM   90
sethsmummy
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oh hun im so so happy to come back on and read these amazing updates sorry ive been mia, weve had another night in hospital and him being poorly.

That is fantastic that you will be able to take him in hun but i know what you mean with it being unfair to take him in. When we were in PICU with Rohan his brothers only came once because there just isnt the space in there and i felt it might be a bit much for them.

I am so so happy that you got to have some proper cuddles And i cant believe she did so well off the ventilation. I really hope they can keep giving her ventilation free time and you get to hold her more and more.



 
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