Team Ding Dong... Bonking, Bumping, and Burping Along Together! ;-)

[mothercabbage]

God is soooooo good

MC, even I'm having a hard time reading the research papers on it In lame terms, CF is caused by a 'mutant' set of two genes. So two genes that have defects, one from mum and one from dad. Lily has on common DF508 and the weird and wonderful C.3140-26A>G (also known as 3272-26A>) The weird one is so weird it actually still does the job its meant to do just in the wrong way. Its all about salt transfer between cells, and too much / too little salt in bits of the body that causes the problems associated with CF. Although the DF508 is a severe kind, the weird one does the job reasonably so the other one is disregarded by the body, to a certain extent. This USUALLY makes for a mild illness. Sooooooooooo made up, nothings certain of course, but the future just started to look a little brighter x

ive just spent the last hour or so reading up on it...its such a confusing illness im sooooooo made up lily has the weird kind too!! i never realised how seriously some people are effected by it, will keep your Lilypie in my prayers! xxx

 

[Tinkerbellxxx]

Awwwww bless you for reading up MC I love you xxxx there's a program on tonight, 9pm bbc3 called love on the transplant list. Tonight its about a 21 year old girl with CF. DH isn't sure he can watch it, he thinks he will be wondering 'what if that's our Lily?' in 21 years time its a VERY confusing illness, but its all about salt and sticky mucus ... ewwwwwww x

 

[puppycat]

I want to watch that Tink but DH wants to watch some crap about Charlie Boorman on C5, guess who'll lose....

 

[Tinkerbellxxx]

Yeah, its not a nice illness. Without medical intervention, Lily would probably die in childhood. Its horrible stuff but just makes me feel so lucky to be living in this day and age not 30 years ago when these babies never got the chance to grow up! x

 

[Tinkerbellxxx]

PC, sounds like the same situation in this house mostly. DH controls the TV, end of. I just V+ everything to watch the next day when he's at work You ok hun? x

 

[puppycat]

Yeh, just feeling a bit low tonight but I don't feel like I have the right to complain in here with everything you girls are going through

 

[poppy666]

Is it after her bottle she goes? FX honey xxx

Yes between 7-8pm bottle then all hell breaks loose. She wasnt too bad tonight i swaddled and rocked her for an hour and got through it, but her nose was pissing her off so she still awake in bouncer, bloody nose

Anyone swaddle in crib?? HV told me they dont do it no more so i stopped doing it, but swaddled her from 5pm and she slept 3hrs solid without waking which was heaven

 

[Tinkerbellxxx]

awww PC don't feel like you have no right to be down, rant away if you need to x

Poppy, so glad tonight has been easier, I hope it lasts. I still half swaddle Lily. The increased cot death risk is because of over heating. If you keep her dressed light, and use just a sheet to swaddle there is no reason why you shouldn't. Like I've said before, the reason for that advice is that it should be 'fool proof' you just know that when its said swaddling is fine there's gonna be someone wrapping their baby in a thick blanket that they can't wiggle out of that's going to overheat badly x

 

[poppy666]

Thanks Tink... just need midnight to hurry so i can go bed, dont see point in going earlier when she wakes every 2hrs cos id be more knackered.

 

[puppycat]

Managed to watch that prog Tink - i actually read her story in my nan's magazine yesterday funnily enough. I'm so glad it had a happy ending, what a brave girl she was x

 

[poppy666]

Yeh, just feeling a bit low tonight but I don't feel like I have the right to complain in here with everything you girls are going through

I miss this sorry PC dont ever feel like you cant post sweete (( huge hugs))

 

[Tinkerbellxxx]

I've glad I watched it too, wondered if I would get too emotional. But it was really inspiring, what an amazing gutsy girl. I'm so glad it had a happy ending also x

 

[puppycat]

Thanks Pops. Just had a wobble, i'm ok now, i'm in bed. Sometimes we just need time to be 'us', not 'mum' or 'wife' etc. I hope that doesn't sound bad.

 

[poppy666]

No think us women need that bit of time to be just US but dont often get the chance/choice

 

[Tinkerbellxxx]

Defo PC, I think its really important honey

sleep well DD's I'm off to bed xxxx :wave: xxxx

 

[poppy666]

Nite Tink xx

 

[Hopes314]

poppy i TOTALLY understand what youre going through with serenity. when mila hit about 3 weeks things got BAD. she would scream from 7pm-midnight every night. some days it even happened during the afternoon too. i called the dr and when they said they couldnt do anything i cried. actually i did nothing but cry until things started to get better around 6-8 weeks. i would count down to midnight each night because thats when it always magically ended. and it always started after a feed. if she started to calm and get hungry i would dread that i had to feed her again bc i knew it would make her scream all over again. i felt like food hurt her i tried simethicone gas drops and i tried gripe water. i also tried rocking, swaddling, car rides, her swing, bouncer, taking her outside, walking her around the house, shutting off the lights, different pacifiers, formulas, laying her on her belly, patting her back, laying her down and walking away for a few minutes, pulling my hair out, etc. some things seemed to help one time but not the next. i never found just one thing that always worked. it was seriously the hardest time of my life. i repeatedly told OH that i hated him for being able to go to work each day and escape it all. i was so jealous of him for being able to leave us every day. we said horrible things to each other we didnt mean. i told him he sucked at being milas daddy i made him cry and hate himself. there were times i seriously, for the first time in my life, wished i could just fall asleep and never wake up again. everyone tried to give me suggestions for the baby and acted like they knew a cure-all, but nothing worked every time. i hid at home with her while she screamed, and we cried together pretty much every day. and then one day... it just stopped. shes still pretty cranky compared to my friend's babies but nothing like before. i know my speech didnt offer much suggestion but just know you arent alone, it isnt your fault, and it will go away! take it a few minutes at a time, a few hours at a time, a day at a time and it will soon be gone

 

[mothercabbage]

well said hopes!!!! i think its girls!! thank heavens i got a bump...my chloe drove me nuts and still does!! xx

 

[poppy666]

Thanks Hopes i could of wrote that post ive been horrible to OH cos he's been away working and ive resented it, told him to move out and take serenity with him etc not spoke to him much since he went sunday.

He's back tonight for the night so he can take over.

 

[puppycat]

Got my kidney scan today at 2.30pm