taadaa shiny new gastrostomy support thread no.3 tube feeding support

[isitme1]

Taaadaaaa
Welcome to the new thread! !
New and old are welcome here

Hi all, just stumbled across this thread and felt compelled to share my sons story. My son who is now 20, is undiagnosed , he is developmentally delayed. He was diagnosed with severe reflux at the age of 6 wks, by 5 mths we were told that he needed a g tube as he had been in hospital so much with dehydration, and a new diagnosis of failure to thrive. His reflux was so severe he couldn't tolerate anything in his stomach. The g- tube didn't work so the next step was a J-tube. So our life began with continuos overnight feeds and doses of ranitidine as well as omeprazole. By age 5 yrs we were able to graduate back to the g- tube which he had until 11 yrs of age when it was removed. It was a long arduous journey, he had many food aversions as well as sensory issues but we persevered. At 11 yrs when we removed the tube, he was still drinking pediasure to bump up his calories. Now he eats everything and you would never know he had such severe reflux and was tube fed. I just wanted to offer a bit of hope as I remember how difficult it was at times, I certainly when he was younger never envisaged him eating the way he does today.

That's lovely to hear magily I'm always living in hope that one day Elbear can eat and drink and sustain his weight enough for the tube to be removed.
Hope everyone is well, still snowed under with the building work here, will it never end?
I love hope you're ok. Xx

I love are you ok?

Will br back in a bit with update

Welcome to the newbie

magily thank you for that bit of hope

giddy glad you got a holiday!

Its been hectic here again. Ds has been bad with meltdowns and is now getting violent towards himself other people and his surroundings.

Been in anf out of hosp since sunday with contractions im 37+5weeks and was 1 cm dilated.
Was scanned in triage and was told he was transverse then scanned next day by Sonogrpher and she said hes really head down and couldn't have been transverse the nihjt before!

Baby doesnt seem to be moving an awful lot compared to what he has been. Since last night 9pm I've had 2 kicks which is unusual for him.
Worrying me as there are a few factors that make it sound like hes in distress. His heart rate going upto 200 and base line being 180 (normal is 120-160) in triage on the notew they use it says its a red alert if babys heart rate goes over 180 for (didnt read how long) and also red if it goes under 120. It had been 202 at highest and over 180 for nearly 2 hours. The trace had decels too which went lower than 120.
The fact that his doppler pi has dropped to below recommended level means something not right (gdd, slow growth, fetal distress etc) and the face hes not moving a lot.

I always say im putting my foot down etc and end up coming home disappointed but there are signs hes distressed and I'm not happy with continuing a pregnancy when hes term and could be nothappy.aibu?
the mw who I saw on the way out of the hosp was more like a friend that's how nice they are and it's been her who I see at appointments and she does bp and urine check (shes mw support worker not really mw) and she said they should have took him out when his h.r was that High for that long. Then a proper mw came (I was with mum and mum knows a lot of mws at the hosp) and she agreed and she even asked another mw. None of them could believe nothing was done.
Imo nothing was done as when the dr came to check the trace the mw who was looking after mw had folded the paper up and dr had turned up after the 2 hours and baby had just calmed down but she didn't check the full trace despite me asking her to check.

I see my consulant today.
Managed to dtd and have hot bath like recommended and just got out of a hot bath.

Had a sweep. She wasnt going to induce and she said dont worry I wont let you go more than 10days over! Then I said no. She said ok come back in2 weeks I said no. She said come back next Wednesday to see mw and have another sweep I said no book me for induction. Tried to scare me off by this point id already mentioned everything concerning me. I said book me in for induction at 39 weeks if you want me to come next Wednesday too she said noI said Im not happy leaving it so she tried to scare me some more and went off to book induction.
She then came in and said hows fetal movement I said ita been really reduced hea still moving here and there but not like before. She went out and booked me in for this Saturday!
Better than next Friday!

On the booking form shes put im 2-3cm she did internal. Shes 'brought cervix down too' and given me asweep. So I ccould go before that although not much happening atm.

DGD so sorry I am not any help my midwife days are long gone all I can say is hang on in there I know they sound incompetent fools but I am sure they know what they are doing (hopefully) My thoughts are with you and am awaiting your news.
Sorry about DGGS's meltdowns I know my 3 eldest pick up my stress our kids are very sensitive (DH and I can't even have a quiet row without them picking it up)
Take care my lovely I wish I could do it for you!! (NO I HAVE DONE MY BIT)

Hope all you others are OK life in school holiday mode, Thanks magily I live in hope but am not overly confident as my 2 little b.....s are nil by mouth!!

Giddy my heart goes out to you over building works they knocked the back end of house and then cleared off leaving the house exposed to the elements over Xmas and new year!!!!!

Love to all including those not here YET

Ilovemonster good luck for Saturday, sounds like you've been having a very difficult time but it will be worth it in the end.

Thank you Magily for sharing its great to hear success stories, my ds2 is also nil by mouth so we will have to wait and see if he is allowed to try food when he is older.

Not much news to report here, seen salt today and they have also mentioned about him getting a peg in the future. Seeing dietician this Friday, not sure what they will say as little piggy has gone up another centile! I'm hoping this means he might be allowed a longer break of his feed but not sure if that's how it works?

Hope everyone is ok and surviving the school holidays?

Good luck for Saturday, battery about to run out and working tomorrow xx

Good luck for tomorrow!! I am glad it is not me but my thoughts will be with you XXXX

Thank you

I just cant believe they have let me get this far despite suspicious ctgs on the baby and reduced movements!

I was induced with ds2 too so know what to expect. I was 2-3cm so hoping they just go and break waters instead of messing around with gels etc

Hello - new to this thread. DS is having his NG tube fitted in 3 hours

They tell me that they don't like it but only uncomfortable for a few seconds...is that other people's experience? DS is 5 months.

Good luck.

We never had an ng. Straight to peg here.

Im sure someone will come along to let you know.

Update from me..
still 2cm. Cervix is back.. had that prostaglandin stuff. That fucking hurt! Contractions every 3 mins and have been for a few hours but no change. Next dose due in an hour.

Hi, missbluebird hope everything went well with ng. My ds2 had an ng for the first 4 months and only found it uncomfortable for a few seconds while they passed the tube. He now gas an nj which is very similar (because he has an unsafe swallow), think he will be getting a peg soon.

Ilovemonster good luck, been thinking of you I remember my induction with ds1 was very painful. I hope things progress soon for you, keep us all updated

It was ok in the end. Worst bit was getting the guide wire out as it got stuck and DS got distressed at being held still for so long.

Any tips for what you do with the 60cm of external tubing? Told to put it down his back but he spends most of day on it and would be uncomfy. Currently got it stuck to his vest shoulder with micropore tape but I can see him accidentally catching it there.

Any baby news?? I am currently trying to resist "helping" the nurses with the 2 week old baby in the room next door. Parents leave him at night most of the evening too and nurses can't sit with him constantly. His crying goes right through me!

With the extra external tubing we used to but it down his back when upright but when lying down would often carefully place it under a thin muslin or cloth so he could move around but not catch it (if that makes sense).

Ilovemonster any news?

Hope everyone else is ok?

Hi all

DGD please let us know what is happening!!!!!!!

missbluebird years +++++ ago we put tubes down with no guide wires they were so easy to place. Do they really need to use guide wires?
Being a paediactric nurse/midwife in our training we had to pass NG tubes on each other!!!! It was not pleasant colleague threw peanuts and chocolate all over floor.

Re external tube (why oh why is it so long) try tucking down his front or coiling under a hat

Hope all you others (how rude) are ok off to see home grown DD for a few days (LO's in respite)

Sleep well you little tinkers for your Mums and Dads !!

Hello...thanks for the tips. After all the fuss this weekend (me not wanting it, trying other ways to get the meds down without compromising breathing, finally agreeing to have it etc) his usual consultant has been to see him today and wants it out. Although then said he is unlikely to tolerate being weaned so will probably need one for feeding in future (??!) We have to start again tomorrow by mixing meds with thickener and giving orally.

We have been in hospital 8 days now and I just want to go home! His lovely night nurse has just been in and suggested she just gives him his night meds in the NG without waking me or him. Can start with the thickener or continue my NG training in the morning after some much needed sleep.

I sat and had a coffee outside the birth centre in the hospital today. Was so nice to see the expectant dada emerging to get supplies or looking knackered but excited phone in hand ready to ring people about new arrivals. Highlight of my day.

Still waiting.

Tonmake matters worse the person looking after kids issstarting to complain.
I cant do fuck all sat in the hospital.
Dh didn't come to see me yesterday so he could look after kids. He came today and all hells let loose with kids apparently. So now dh has gone home even though theres a good chance of me going down tonight.
If I dont go down tonight im speaking to bed manager in the morning!

I had baby monstersinc this afternoon at 2.47pm.
He weighed 9lb5!
Waters broke at about 8ish I think. Contractions started properly at10ish and I was scarwd so stopped myself pushing when I needwd to.

Then I thought fuck it. Lets go with the flow and let my body take over. Best thing I did! Within 2 pushes he was born. Took t the breast straight away.

Lovely news congratulations monsters, were you at home?

Lol at home? ? Ive been in since Saturday and had him yesterday. Had to stay om hormone drip for 4hours which hurt loads!

Congratulations Ilovemonster

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