Re: Shall we remove the gastrostomy????Jacques 4.6kg (10lb)1yr old

December 19, 2000

Dear Ann

Sorry, I can't answer any questions about your gastrostomya as Darcy doesn't

have one. Since birth he has continued to put on weight very slowly, and

the reason his paediatrician hasn't considered it is because he is very

small and not growing well, but HEALTHY - ie despite his poor appetite and

poor weight gain he is not malnourished or undernourished and he's not

exactly fading away. He's not carrying any extra fat, but he's not much

skinnier than his sister or myself were as babies.

Darcy was bon 1676g - bugger I can't remember what that is in 'american' but

3500g is average, at 12 months he was 5kg, average is 10kg, so he was born

and still is half the weight he should be. Also much smaller in the length

stakes than average (way way below the 3rd centile in both length and weight

and drifting further away from the line)

How old is Jacques, and how much does he weigh? Darcy was fed by

nasogastric tube for most of his first 2 months and on and off for the month

after that while he built up the strength to breastfeed - happy to say he

breastfeeds okay but flatly refuses more that a mouthful of milk from any

other source, I have little doubt that the second I stop breastfeeding he

will stop gaining weight. It sounds like Jaques is around the same age? It

also sounds like he is eating fairly well for RSS - if you are only pump

feeding him 150-180 ml of formula overnight, then perhaps you could discuss

the option of calorie-packing with your doc - ie adding cream and pediasure

or equivalent to his formula and a little extra oil or butter to his solid

feeds, to make up the calories he would be missing overnight?

I hope you can sort out this issue, it sounds like you're having a really

tough time with it.

Steph (mum to Darcy 13 month RSS and Tessa 5)

>

>Reply-To: RSS-Supportegroups

>To: RSS-Supportegroups

>Subject: Shall we remove the gastrostomy????Jacques 4.6kg

>(10lb)1yr old

>Date: Tue, 19 Dec 2000 16:39:26 +1300

>

>Hi all,

>We are in a bit of a dilema as to whether or not we should get rid of

>Jacques gastrostomy.

>Jacques has had a gastrostomy in since September and since getting rid

>of his nasal gastric tube at that time he has improved a lot with his

>oral feeding. We only feed him orally during the day and he generally

>has approx. 320-350ml (12oz) per day of normal strength formula.

>Overnight we pump feed him about 150-180ml of formula. Also during the

>day he has solids, about three lots of maybe muesli, avocado and vege

>with maybe some sort of meat, a total of about 45 teaspoons of solids a

>day, maybe more.

>The gastrostomy is always leaking, not as much as when it was first put

>in, the disc on the outside always moves therefore causing more leakage.

>He is always rubbing at it, as it did have a rash which has now gone but

>he still rubs at it which really upsets him and causes it to leak as

>well. At night he hates being covered up with his sheets and cotton

>blanket which we pin down so he can't kick them off and get to the

>feeding tube. It's coming into summer, so that will become more of a

>problem with him getting too hot I guess. I don't sit him up much as

>this causes it to leak as well although he can sit up with support. So

>this is detrimental to his physical development.

>What we want advice on is, as to whether to get rid of the gastrostomy,

>as we are fed up with it, he is too. The professionals of course want

>us to keep it in until he gains some weight. I feel he will continue to

>improve and he definitely does have an appetite, but it can vary from

>day to day, generally he is pretty good, even has a good feed after an

>overnight feed.

>Can anyone out there give some advice on their experiences with this

>sort of thing and whether we would be irresponsable parents if we took

>the gastrostomy out. Also give us some idea of volumes of formula and

>solids their baby boys were having at a similar age and what weight they

>were. Also as to whether their babies improved again with feeding orally

>once their g-tube was taken out.

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December 19, 2000

okay now I read the 'subject' heading, 12 months and 4.6kg was he small at

birth too?