Feeding baby with complete avsd

[Suzziie]

My almost 3 month old has a complete avsd no down syndrome, since he was born we have stuck to a feeding schedule where I feed him every 3 hours even if i have to wake him this was the advise I was given in the hospital, i really do think that because of this he isnt getting enough sleep and I want to try demand feeding but im worried he wont feed enough if i was to do that, has anyone got experience with this has anyone managed to successfully demand feed a baby with avsd?

TIA

Sorry, can I ask what ASD is please?

It's Atrioventricular Septal Defect which us a congenital heart defect

It is a heart defeat I think?

3 months old, over the very newborn stage - do you have a HV or paed you can ask. Reluctant to advise because your lovely baby's might have additional health needs.

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Speak to your hospital. Now he’s not newborn he might be able to cope with extended periods. Also possible to give higher calorific milk to reduce frequency but should be done with advice of paediatric dietician. Also possible to do constant nasogastric feeds overnight to allow everyone to sleep but that may not be necessary if he’s feeding well.
Get a dietician to call or see you.

Apart from the avsd he is compeltely fine, he's gained weight well to be honest unless I tell people they never know that he has a heart condition you just can't tell, we have a HV but tbh she seems very judgemental and doesn't really seem to know what she's on about I might ask his cardiologist when we go back in the new year I was just wondering about other people's experiences with feeding a baby with avsd and weather they have successfully fed on demand, it the sleep that worries me he's always tired and with me having to wake him all the time I dont think he gets enough sleep which is important for his brain development.

CherryPavlova thanks for advice, we havent been refered to a dietician unfortunately maybe I should ask to be he seems to be able to take in a good volume he took 4oz yesterday which is the most he's managed usually takes 2-3oz but I recon if he was to demand it himself instead of me giving him every 3 hours he will probably take the 3-4 oz every feed and he will have more sleep.

Will he have OHS to correct the AVSD soon? Does he need to be a certain weight before his operation?

I have only fed a baby post OHS. I remember that he fed a lot in order to help him gain weight after a long time in PICU. He was breastfed after his feeding tube came out so I did not know how much he was having at each feed.

Yes hopefully he will have his op in the new year we seen his cardiologist not long ago and he said once he's seen him again in the new year he will bring him up in his meeting to decide when his op will yake place he was born 6lb 13oz and currently weights just over 10lb apart from falling asleep during feeds he does feed well and majority of the time will wake for a feed l, he took 4oz in one fees yesterday and I recon if he had more sleep he would yake this at almost every feed as he wouldnt be as tired, also because he gets fed every 3 hours sometimes he only takes 2oz because he simply isn't hungry enough to take more.

I would ask for a referral to a dietician as they are the only ones with expertise and knowledge of your child. You might be able to speak to one at your local hospital rather than the tertiary centre. Your HV and GP aren’t going to have enough experience of CHD babies to provide the support you need as weaning approaches. GP could refer to local paediatric dietician though.
I think it hasn’t to be done with expert advice as you’ll not want him losing weight pre surgery.

That’s has to be done!

Cherrypavlova thank you I will ask GP to refer us straight after Christmas.

Hey i know this is a super old post but hopefully you might see this x

I have had multiple scans to check my babies heart and it has an AVSD also. I just want to know how you got on with everything as your baby as grown up? Was there any additional needs at all? Just trying to prepare myself for anything and everything, trying to talk to people who are in/have been in the same boat as me x tia x