Anyone else have a pyloric stenosis baby - advice please

[littlehouseontheprairie]

My 6 week old DS had an operation to correct pyloric stenosis last Friday. He was quite poorly: we didn't start feeding him milk until Sunday (6 days just on an IV drip). He was always small - 5lb 7oz at birth - but with a big appetite. His appetite is still big, but obviously his stomach since being on fluids has halved in size.

The advice is not to feed him more gradually so he and his digestive system have time to get used to more food. Which is hard when he's so hungry. But already he's got bad digestive stuff going on: wind, burps, hiccups, tightness - he gets really upset and starts crying. Last night he didn't sleep from 3 onwards and kept breaking out into a cry/grimace.

Anyone else have a PS baby and have these symptoms after the op? We're told his digestive system should settle down but will it? I gave him infancol on the last feed just to help.

Any advice welcome - feel like I'm in a bit of a nightmare hamster wheel with him and feeding/digestive issues

Thanks

Not sure lady but my step son had it, he almost died before it was diagnosed but the surgeon said to expect an olympic champion here, he's the 3000m steeplechase under 17 british record holder so that's something to look forward to!

It's really scary isn't it but it will get better. I was a maternity nurse to a little boy who had his operation at day 15 - unusual to have Pyloric Stenosis so young.

We were advised to feed him when he wanted he was BF and formula fed so we alternated feeds. He was only taking small amounts (maybe 2oz) and fed two hourly for ages - I felt like I was getting no sleep.

He also was quite uncomfy and we used gripe water to ease the wind (we were in Bahrain and they don't allow infacol). We were also advised by DR to give fennel water, but I didn't feel comfortable giving him basically sugar water when he was a bag of bones so we just stuck to milk.

Somewhere between 10-13 weeks he got less uncomfy and now is a strapping 3 year old.

If you use Infacol use at every feed as it is culmalative - works best if used at all feeds. Hope all continues to go well for your little guy it is a shock to see them so ill but it will get better.

Keep trying the infacol, if it is not working, discuss with the doctors the use of colief. It is imo better than infacol, but much more expensive to prescribe. Again it is little and often with feeding to give the stomach time to expand naturally.

i don't have direct experience but a friend of mine's first baby had PS and was ill for a long time before she had her operation
anyway, the advice she was given was simply to feed on demand. as I recall baby was happier very quickly. she was breastfed though so not sure if it applies if your baby is bottle fed?

OP my DS1 had the operation when he was 7 weeks old so I completely understand where you are coming from It honestly was the worst point of my life I think.

However, not sure I can be much help as the advice we were given was to just feed him as normal and, whilst he may continue to be sick for a while, he would soon be perfectly ok - and this was the case. I think he was maybe sick a couple of times after the op but was soon feeding normally without being sick. Ds1 was only on a drip for a couple of days (his op was 2 days after his diagnosis) so maybe this was different.

Just to reassure you, he is now 4.5 and the only sign there was ever anything wrong with him is the tiniest scar on his belly button which you wouldn't even notice if you didn't know.

Please PM me if you want any further support as I really do know how awful it is - although DS1 did recover very quickly. I also remember having DS2 and being so afraid that we would have to go through it all again, particularly when he started vomiting at about 5 weeks old...fortunately he was ok but the feeling of having to hand over DS1 to the theatre nurse will live with me forever

Thanks all - really appreciate the support. Yes, it was a total nightmare but I'm also really grateful we had a health visitor who diagnosed it. If he had been left diagnosed for any more time, he would have become even sicker...

Anyway, onwards! He is smiling and making a good recovery. He is keeping down all his food, minus the odd tiny dribble and his hungry.

I've started giving Infancol every feed and i called hte hospital again and said he's so hungry all the time and they told me to up the feed. So although it's on demand, he tends to go every 3 hours and we're feeding him 80ml then. That seems to now be satisfying him.

Having gained weight really well, my son developed PS at 9 days and was operated on 5 or 6 days later. He had dropped to below his birth weight by then and was on a drip.
I was breast feeding but from the afternoon after his operation we bottle fed him on demand so we could monitor what he was getting. Small feeds that afternoon but I started breast feeding on demand again the next day. He was never sick again but was collicky for some time. Tried Infacol etc but nothing seemed to help with it but he grew out of it over the following months and I know babies with much worse colic who didn't have PS.
It was the worst time but it all seems a very distant memory now.
I'm sure your little boy will soon start to thrive again.

My baby had surgery 6 days ago. She has not fed over 11 days now, doctor suggesting not to feed or do a GI test until the fluids from the vygon that she have in her stomach diminish. My baby is starving. I hope a second surgery is not needed.

My baby was just born November 2nd. This ps started after birth she's currently in NICU starving. Has not fed now 11 days and post surgery has a yellow foggy color fluid coming out from vygon. It's pure nightmare I'm extremely sad.

I just don't understand why stories here wit babies with ps were able to feed babies and we are not able to, they said it will cause more problems if we do. 😞

@Ilovebeingamommy2121 has your baby definitely got pyloric stenosis and not some other surgical condition which might be why the course isn't fitting what the other people on here have said.

It's really unusual for pyloric stenosis to be diagnosed so young - typical age is 6-7 weeks.

Most kids come back into hospital from the community with vomiting and therefore never go to NICU as they don't usually accept kids who have been home.

Apologies if you have definitely got the diagnosis right but you there were a few things in the story that don't quite chime right (I look after a lot of kids with pyloric stenosis).