Gastrostomy support thread no.2! Tubefed children support thread

[Isitme1]

Welcome to thread no.2!!!

Everyone sign in please so we all know who is here

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[sneezecakesmum]

euphemism for fat was meant to be euphemism for fat .........now Im really in trouble

[Isitme1]

Granny they just don't want us there.

Sneeze its almost like we're in a 1 bedroom flat and we go to theres during the day.
There will be no more of that then.
We went food shopping so weve got more In.
I made some delicious rice today so very proud of myself :)

Ds had the most poo!!
Almost normal! !
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But sadly still refluxing
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[2old2beamum]

Grandaughter I had no idea you lived withyour parents am I right? Are you on housing list. I really don't now how you manage, you make me feel guilty as we have 8 bedrooms.. Everything nowadays seems to be stacked against young people. Sorry Little Man is still suffering with reflux DS has now got a jejunal tube which does help but still needs Omeprazole,
Tell me to piss off but was Little Man ok prior to meningitis? DS was absolutely fine until then Delighted about poo

Pleased I was pose 100

Oldsneeze religion passed me by at 18

[Isitme1]

We've decided to stay here away from them. Even though a few of them come up here to use the rooms.
They keep saying im wrong
A mother will not stand by and watch her child be treat like shit.

The reflux is silent reflux and you can hear him be sick but swallow it God knows how many times a day.

Ds was 9weeks old when he had meningitis.
5 days prior he was diagnosed with reflux. It was horrible. I was tired and I he got up and I put him on my chest to lie down and he was hot amd grunting. I didn't think anything of it and his dad was with my dad at work at 6am.
I thought he was constipated and thats why he was grunting but took him to gp amd he prescribed antibiotics just in case and said if he was no better by 4pm go hosp.
We went hosp and he perked up. So we were told its just viral.
Next day he wasnt too bad but when it got to 8pm je deteriorated very quickly.
He was floppy and had high temp and lathergic and would cry at times.
We went back to a n e and he was seen straight away. They canulated him and gave him antibiotics iv and then he was transferred via ambulance to a different hospital.
The consultant there said we have to do lumber puncture to rule it out but it wont be that.
Then when the results came in at 2am he was surprised as ds was ill but not omg ill at that time. They started treatment amd gave him a brain scan a few days later.

I had a horrible dream the other day that I had a prem little girl and then ds got meningitis again.


Granny I dont think we can get council housing due to dh as his visa conditions are that he has no access to public funds amd council houses are I think.
I might just ask the immigration solicitor.

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[sneezecakesmum]

Poor you and little DS. I know exactly what you mean about desperate illness etc with your LO. It felt to me like I was sleepwalking through some nightmare with DD not to good after crash c section, and DGS fitting and being on NICU. Every bloody day barely getting through and just wanting it all to go away like a bad dream. Around you life is just going on, normal babies everywhere, happy parents and you are just in this bubble of despair and FEAR. The bad dream you had sounds a bit like PTSD lingering. It gets better with time but being pregnant again, for you and my DD just brings it back again [def no xmas hat]!

Have you thought of renting? It is expensive but the peace and quiet of your own space and no interference from family is very precious!

2old...you live in a mansion?!!!

[2old2beamum]

No oldsneeze I do not live in a mansion just a tatty Victorian Terraced House 1874 like a lot of seaside town houses very close to the sea Financially more draining than a truculant teenager!! but I love it Am known round here as the batty woman that buys/drags old furniture etc home. House so full (but I am organised) that I now only collect small bits.
Hope you are all well Little DC's school tomorrow Support staff never seem to use common sense over drugs etc health and bloody safety The drug regime always seem to change over holidays and then they are off to respite on Wednesday but hosp appt on Thursday for DS and Friday in to school for infusion. Both appts 60 mile round trip!! Some respite

Grandaughter hope you are all ok (I am in moan mood)
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[Isitme1]

Moan away then granny.
Today and yesterday was better.
Ds had his meeting with nursery amd he loved it. Hes going for an hour today and starts on Monday. So me n dh get to see dc2 on the scan next week peacefully rather than worrying about ds kicking up a fuss in the hospital lol so he will be at nursery.
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Sneeze it is horrible and yhh being pg brings it all back but we will get a little baby out of it so it's worth it x

[sneezecakesmum]

2old. What you describe re the school and the med regimes etc is scary. We are worried about DGSs blended diet when he starts school in September. Can see DD having to go in 2-3 times to feed his tube Really can't see dietitian doing a u turn on feeding. Bugger just when we are getting to grips with it all.

Isitme. It's worrying about getting a little babe out safely which is giving us nightmares as all DGSs problems started at the birth. Glad DS like nursery. Lovely to get someone to take over for a bit. DGS loves nursery too which is nice.
Night all xxx

[Isitme1]

So is dd going for csection?
My problem was I couldn't dilate properly and I was in labour for 5 days (and they left me that long while I was waiting to be induced) and then I tore and insides came out with ds and had to have emergency surgery. So this time round im thinking is it safer to go straight for section or do I say after waters have gone if within 2/3 hours nothing has changed to go for section? ?
Seeing consultant on Monday so will know then x

[2old2beamum]

Oldsneeze regarding feeding, I agree without dietician on board there will be trouble ahead. Do you think he may be taking more diet orally you can but hope.
Somewhat annoyed with school they refused to give DD's tablets as they had no expirey date on bottle- the bloody things were only dispensed on Friday
Talk about covering their backsides before the health of the child Both in respite until Monday SLEEEEEEEEP

Grandaughter (midwifes nightmare) if you were my patient with what you have said I think a c-section would be my choice. But I haven't seen your notes. Hope DGS is ok XX

Galli have you been to panel yet.

[sneezecakesmum]

DD is having another c section. Not going to risk same thing happening (placental abruption at home ) If I were you isitme I would go straight for a section, not risk tears and other stuff going wrong again. If you wait til labour starts there may be someone else in theatre etc. planned is my bet. I dont go with all this earth mother, natural labour malarky. Its painful, frightening and dangerous! (but thats just me). Now attachment mothering? I did it before it even had a name...

No expiry date on the label!!!! So let the kid get sick??? words fail me.

Hopefully DGS is eating well by september but DD is prepared to go into school to feed tube. Me too. Can always tube breakfast and evening meal regardless. Dietitian wont get on board as real food causes tubes to disintigrate as we put battery acid in the feed dont ya know?

[sneezecakesmum]

2old. Whenever DD mentions silent placental abruption at home to the docs and gasmen she works with (in ICU) she gets gasps of horror! As a mw you know it doesnt get much worse than that!

[2old2beamum]

Oldsneeze didn't realise she was a placental abruption (can you hear the gasps of horror from Norfolk) Although I did my midwifery I shot to NICU at the 1st opportunity much more my scene. Is your DD going to stop work @ 28/weeks Also I agree with you about this modern fandangled motherhood. All I care about is a live healthy mother and baby!
goodnight all you scallywags xx

[Isitme1]

I bet you heard my gasp too.
Bloody hell.
How was dd after the section?
When could she get up and actually do something? Thats what im worried aboutas dh works and wont be able to get that mumuch time off work and I have ds.

Granny thats what I thought should of happened.
The mw that I had was such a bitch she said I will make sure you dont get induced first and swore at mum!!
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[sneezecakesmum]

I can hear the gasps of horror! Was everyones worse nightmare, but DGS is here, he has his problems but he is gorgeous! DD has now stopped work (sigh of relief) SPD, back and pelvis giving up the ghost. Scan today was spot on. she's having monthly scans because of the previous problems.

isitme. DD was up and showering (complete with catheter bag) the next morning. DGS born at 22.20 the night before. She just seemed in a daze, carting the catheter around, never moaned, despite huge scar (DGS out in 3 minutes I believe..scalpel to skin it says!). She only had thoughts for the wee mite clinging to life NEVER said a word about herself (love that girl )

fathers get parental leave you know. Think its 3 weeks but not really sure. at MW behaving like that. They were all lovely to DD, and way back in the mists of time my MW was lovely too. Hope you have better luck this time.
night all x

[Giddypants]

Just to correct mum
DS was born in 7 seconds from scalpal to skin, 27 seconds from me being intubated to El coming out. Not 3 minutes.

Just checking how many times shes called me fat, it's ok I call her old

Aka sneezecake xx

[2old2beamum]

Don't worry Giddypants we know oldsneeze is slightly potty and to be honest I can't recall her calling you fat. BUT she does call your Dad "the old fart" Hope you are OK and you are putting your feet up. ITU not the best place for "ladies in waiting"
HAHA oldsneeze I've dropped you in it

Grandaughter XXX

[Isitme1]

Sneeze your extremely lucky to have a mum thats supportive.
Hope you and ds and baba are well

Granny enjoy your time off x

[Giddypants]

She is fabulous I must admit, think I would have been sent to the loony bin without her! She was telling me how when I was a few days old and smiling at her, I've always been a mummy's girl

Dad is definitely an old fart, I'm sure he was born that way too!
Work is on hold for the next year now, even management are in agreement that I had to go and take things easy for a while before ds2 arrives.

Mum is having Internet difficulty so may be away for a while but she thinks about you often.

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[Isitme1]

Glad your taking it 'easy' (what ever that means lol)
How are you finding things?

Hows the bd going? ?
Aww we'll miss here over the next few days
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[sneezecakesmum]

Flaming Internet. Comes and goes all the time, talktalk threatening to send expensive engineer out.....just send me a new flaming router first.

As mums go I'm not bad

Xxx

[Isitme1]

Ive just seen the typo
Woops
Im sure you all know I meant miss her.

Stupid Internet people.

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[Giddypants]

Pregnancy wise, I'm ok I have the odd moment when I think OMG what have I done one is enough, and then gooey moments, like yesterday when I saw my friends 4 month old, she gave me a load of tiny vests, and I think it's not too bad.
Mobility is my biggest issue seeing my physio on Monday think she will give me one of those girdle things to hold my pelvis in place, lifting DS doesn't help, but what am I supposed to do?

The bd is going really well, he's a different child, loads more energy, (even at night ) bowels open every or every other day, vomiting stopped, nothing but positives, except the time spent making the blends, but even then we just make more dinner (which we eat) and just blend the remaining up, adding some oil or cream to increase the calories. DH is quite enthusiastic about it too, I think he just likes playing with the blender.
And mum does a lot of the blends and freezes then so couldn't be easier than to just take a tub or two out the night before.

DS has managed 200ml at lunch time, which is a record!!

[Isitme1]

O wow. Thats brilliant hes doing well.

I had spd 1st time round and from what ive heard its supposed to kick in earlier 2nd time round so not looking forward to it.
Can I ask you how you got on after csection (if you don't mind, if you do just tell me shut up lol)
the only thing that keeps ds regular is the erthorymicin
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[Giddypants]

I can't really remember too much about it, I had a general anaesthetic so no epidural for pain relief, I was given 10mg of IV morphine post op, but then it was just paracetamol, i think they said it was because. I was breast feeding, that they couldn't give me anything stronger.

I think the first 3 days were painful, going over speed bumps were the worst, kept shouting at DH to go slower!
I couldn't walk (due to pain) the first morning approx 6hours post op when I persuaded mum to wheel me down to NICU to see DS.
The catheter was nothing to worry about, just don't do what I did and leave it attached to the bed and walk off I didn't get far!

Having said all that my friend had an EMCS and her recovery has been ok, she had an epidural so pain relief was much better, she still couldn't get up for 12 hours or so.

I'm just not looking forward to the needles in the back, having assisted and witnessed my fair share of them I know the process which isn't always a good thing!