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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Happy birthday isitme! . Hope DH makes it special with a nice relaxing day. I have no intention of getting pg. would make medical history and the news of the world!

Wonder why they want to see little DS surgically? Sounds quite scary but I am sure it is routine. DGS not put any more weight on despite killing everyone's back who lifts him . Will seriously up the volumes now...we mean business!!

Gali is busy with her new baby.

Love the blended diet fb page. It's a lifeline if you need info. Definitely recommend it to anyone

Happy birthday DGD and XXXXX
Oldsneeze PLEASE count me out on the pregnancy bit as well impossible thank god.
Life here is manic DD has suddenly decided she does not like spending !.5hrs in the taxi to school.
too many hospital appts, older girls have been summoned for "pill" check at GP's for goodness sake they see cardiologist X4 a year
Will post a more cheerful post tomorrow.

Take care my understanding mates XX

its birthday on Friday shh :)
Nice to hear from you granny anf sneeze x

Ds reflux has really been bad recently. He was sick 3 times yesterday. Proper projectile vomit. Dh has witnessed what I had to go through alone for so long. Hes not himself due to the pain. Hes not got diarrhoea or a bad throat or anything like that. Hes got a bad chest but its always bad (asthma+reflux) but hes not being sick with a cough.
We were in town yesterday and he was sick the lady at checkout freaked out. I had to explain that he didn't havr the norovirus annd that it was reflux. You should of seen her facr after I told her.

Hes cutting a tooth but has been for a while but thats nevee been a problem. Will have to watch his nappies. Going to ring gp so he prescribe diarolyt. His pump wont let me put the rate lower than volume? So of im giving 100 mls I would want to give it over an hour it won't let me?
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Will the pump alarm when it has run out of feed? If it does just let it run out and set the volume to what you want.
Poor wee thing with the vomiting, I don't know what to suggest for him

2old, great to hear from you, are you sure you wouldn't want to be pregnant again!? Was discussing with mum that if they had taken my uterus after I had DS she would have to be a surrogate for me! that's if her bits haven't turned to dust

Scan today all ok, still growing on the average centile line, whatever that means, so section date booked for the 26th march eeeek! Just need everything to go smoothly until then

Hi folks just a quick check in and apologies for the short post.

Hugs to everyone who needs them. Seems like quite a few are needed. Hope all thebumps are behaving themselves and kicking their daddies into touch :-D

Things here are manic. Bern doing very intense intros with little DS. Things were delayed by a week because he got unwell.

Any advice for me re how I get a little chap, who is not motivated by food/drink at all and who has been fed by only 1 person for his whole little life, to drink his bottle for me? He is doing really welk accepting comfort, coming to me, playing, kissing but will not drink! Will only take it from fc. Help!!!!!!

Xxxxx

AND I was going to sell my story to the newspapers...grandmother pregnant with her own grandchild! It would have been a labour of love (pun) and DD would have had to pay for my tummy tuck and boob job after the delivery AND it would have been me forever moaning discussing my back ache, SPD and on and on.... For me personally pregnancy was the most vile and hateful experience ever! The only thing good to come of it was DD and DS

Isitme...I think formula make kids with reflux worse. Did little DS have a fundo? I thought it stopped vomiting, but its seems so drastic.

Re fundoplication was useless with our beautiful boy could still hit the far wall with vomit.So sometimes they do not work

Galli glad your LO is with you, I am sure you will soon sort him out with love.

Oldsneeze you love it

Question for some, has anyone used Neocate Advance were there any problems.

I may be missing for a day or so, am going to hosp tomorrow for a miniscule op but they say I may have to stay overnight GRRRR. If you hear on the news an old naked woman crawling up the A140 IT WILL BE ME.

Take care all you lot and Giddypants and DGD look after yourselves OR ELSE.XXXXXX

good luck 2old (not that you'll need it) sorry no help with the neocate.

lovely to hear your little boy with you galli how okd is he I know mum has difficulty getting oral fluid into ds as he will only except a cup from me
just keep persevering I think that is all you can do.

happy birthday isitme!!!!
hoping you get spoilt by thoes boys!

Friday already, I really can't sleep ds has snuggled in to me so I'm all uncomfortable don't dare move him! and bump has been super active since his privacy was invaded earlier at the scan. just want him to take his foot out of my ribs

Luuk had neocate advance. Firstly it is FOUL! He was doubly incontinent on it andhad huge malabsorption problems. However that was the same for every formula he was on. He only got healthy when we gave him real food down his tube..... Xx

2old: hope all goes smoothly ay hosp and you get home same day x

Isitme: Happy Birthday to you xxx

Everyone else: Speak soon and take care ( sorry I'm a wimp. Worry that if I name everyone I might forget someone) xxx

Good luck granny.

Giddy I know the feeling. Ds keeps climbing into our bed on my side nd In his sleep kicks bump. Dh on the other side rolls over nearly squashing bump lol. Tonight I might sleep in ds cot bed lol. Ive got heads ache as I've not slept properly in days. I can't turn over in bed due to lack of space.
Moan over.

Neocate stinks but is the easiest thing for ds to digest (even though hes not digesting it)
On a positive note ds woke up anf tried to sing happy birthday. Dh said happy birthday first thing too and baby kicked. All within 2 mins lol.
X

Oooh anf thank you very much.
happy birthday to me .:)

Think I x posted with gali. Congratulations on the little one tho I don't know what to suggest re drinking. Straw? Bottle, sippy cup? So lovely that he is affectionate.

20ld. Good wishes for the OP, try to rest a bit and no crawling anywhere! No idea re neocate!

Happy birthday isitme . No more to say except email was hacked into and all my contacts were sent emails from'me' asking them for money! Hahaha. Maybe it was me in a fugue state as I'm skint. All day scanning computer but sorted now. Waste of a day. O well. Goodnight all tubettes

having a low night tonight.
Only on wednesday consultant was saying she would hope in about 4-6 weeks we wouldnt need tube anymore as we only top up 2 times a day.

Yesterday we have nosedived. Not only did we have to top up every feed but a couple of them were 50ml out of 65ml. :(

Not sure if his reflux meds need upping due to his weight going up. Hes not being sick but this is what he was doing before the tube and meds, he messes around, big swallows and funny tastes.

Do you think if i rang gp on monday they would give me topped up doses over the phone as i cant actually get to the gp till tuesday.

What a sucky sucky day.

alamaya don't despair could he have picked up a bug or anything of the sort?
I don't know what else to suggest, maybe make a telephone appointment with the GP?
Tomorrow is another day and he might be better x

Sorry not a helpful post!

lol @ giddy

He was projectile like sick after this post this morning.

But then at 9 hes took a full bottle by himself?

xx

Im guessing dosage needs increasing.

Ds has been pretty bad lately with reflux but hes lost weight not gained.
He looks so fragile now :(
Hes tolerating around 300-400cals a day atm.

Hope all is going well granny.
Sneeze gali and giddy (sorry if ive missed anyone) hope all is good
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Hi all I am home had to stay overnight as I was last on list But as so many people were cancelled I am very grateful to the anaethetist who fought my corner.

Giddy like you I am a big wuss (believe it or not) and am terrified of hurting peoples feelings.Hope you are ok look after yourself. How many weeks are you?

Galli hope your LO is feeding a bit better now but it can difficult. What does Luuk think of it all?
RE neocate advance Hope it is not too disgusting they think Annabel has a food intolerance as she has constant diarrhoea personally I think it is linked to her immune problems.

Alamaya hope your LO is improving Bloody puke!!

DGD Oh I remember 2 in a bed and a bump glad you had a good birthday hope your young fart is looking after you.

Oldsneeze No I haven't forgotten you......How could I? hope you are ready for the next little Giddy.How is your old fart, mine is being very helpful

Many thanks for all your good wishes Even just 24hrs on I am feeling so much better.
Take care all of you sleep well Love to all scallywags.
XX

Almay, hope DS us ok. Upping meds sounds like a plan.

2old: Glad you are feeling better. Are they expecting Annabel to drink the Neocate? You do get flavour sachets but not sure how good they are. I do know done kids who like it but I accidentally tasted it and almost puked! Sorry

Little DS did fab yesterday and drank a whole bottle in 1go! During intros you are not supposed to change anything so I was a bit naughty. FC outs lots of baby rice in his bottle for no reason she can give. No swallow issues etc. So I bought smaller holed teats and didn't put any rice in. Result, relaxed, happy drinking!!!! I also got him todrink 90ml water from a doidy cup! A much happier boy yesterday. Even ate all his lunch and dinner. Lots of smiles and much more relaxAm feeling far more confident that he will settle and trust us fairly quickly. Poor wee soul us really confused right now. Especially when we are together with FC! Roll on Tuesday xx

20ld. Welcome home. Hope you managed to sleep in hospital. At least it's over and a weight off your mind. Glad you little tribe survived without you and OF coped without the Boss! Is it possible DDs diarrhoea could be the formula? Seems to be a big thing on BD Facebook..either that or constipation. But JTubes are different that pegs. . It's all so difficult.

Gali. So pleased little sweetie pie is drinking ok now. He Must be so confused but little ones are so adaptable and I think as long as he is loved he will make the adjustment to you.

Giddy is 36 weeks now and counting . Feeling anxious and just want him to arrive safely. SPD not much fun for her now.

Granny glad your feeling better.

Gali that sounds so rewarding and heart warming. It really is wonderful to hear hes starting to trust you.

Giddy its not much fun after 35weeks :(

Ds keeps bleeding fresh blood from anus.Its scary. Dont know what to do. Hes refluxing more and is complaining of a lot more tummy ache. He woke up and gave me hug and said mum (im no longermummy lol) tummy hurt. He looks pale isnt himself but it takes a lot to knock him down. Hes still playing but os very quite at times. The last time I took him to get checked he wasn't himself but clinically he was ok.
Might take him walk in centre to get urine checked. Any ideas? X

isitme I wouldn't be happy about the bleeding, has he had it before? Is he constipated? I really think it needs investigating.
Do the gastro team know about it, is there a lot there, if it is only happening every so often, make a note in your diary when how much and what if anything he was doing before it happened maybe there could be a pattern?
Either way think you need to keep a record of it, take a photo also to show them.

2old so glad your home safe and sound, but remember your still recovering so take it easy (ha) make the OF do some of the stuff you do for a week or so.

gali so nice to hear the new addition is settling in well I suppose it will be a big adjustment for him.

DS is doing well, dispite the odd bit of puking, it's mainly when he's having a giddy episode which is usually when we are just heading out for an appointment (he loves the car)
He's currently giving charley bear and iggle piggle kisses and putting them to bed repeatedly !! very cute though hopefully he'll drop off soon.

The novelty of pregnancy has worn off now, just waiting for it all to be over and having a healthy wee boy to take home.
DH thought a was going into labour this morning but it was all the pot holes he was going over and aggravating the SPD!
Hope everyone had a happy weekend another hectic week ahead! X

Hes been constipated for 3 days or so but reflux amd not tolerating feeds.
He just looks like hew going to snap.
Gp is crap. Ive emailed dietician so should get reply soon.
He keeps trying to poo and is going small hard bits with overflow.

There are literally drops of urine in his nappy which should be soaking as it was from overnight.

He woke up this morning and kept saying mama poo. Which he hadnt done. Hes now crying trying to poo.
Need to see to ds
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