Does weight gain mean he's getting enough?

[blessedatlast]

So we have major issues with breast refusal. He gets 450mls per 24hrs through an NG tube so I at least know he gets that much (8am, 7pm & 11pm he has 150ml).. So between 8am and bedtime ( normally 6.30ish) it's up to him to breastfeed. He is lucky to have 3 feeds lasting 5 mins. By the afternoon his nappies are damp with concentrated urine. He probably only has about 5 or 6 wet cloth nappies in 24 hours (leaving a 10 hour break overnight with no nappy change) I worry he's not getting enough but he's gaining weight still. Solids are started, but he doesn't have much. Thoughts?

[Tegam]

Five minutes is actually a 'long' feed time. Old research said that a baby gets all it needs in the first 7mins. The rest is for love

My kids have always fed quick. Sounds like there are enough wet nappies

Hugs I think you are doing a great job

[blessedatlast]

It's the fact his nappies have a gritty spot where his penis rests that worries me.. I feel his urine is quite concentrated by the arvo. His nappies are wet, but not soaked..

[onthefly]

hm, sounds like it's close to enough with that many nappies. How is he otherwise? Any sign of dehydration, etc?

[blessedatlast]

No he's fine otherwise.. I just know how fast they can dehydrate!

[Trillian]

What's the weather been like up there lately? if it's a bit warmer than he's used to he may need a little more fluids than he's getting. If in doubt, he would be fine to have a little sip of water from a cup.

[Tegam]

Yes trillion I was going to suggest the same thing. What about playing with a sippy cup? Or a wet washer to suck on. But really he sounds fine to me.. If he was thirst he'd feed longer

[Saffy]

How old is your little man Blessed?

I agree the nappies sound like enough, 6 in 24 hrs is acceptable.

What are the BF like? Can you recognise swallowing? Some babies can have an efficient feed in 5 mins, if there is a good suck/ swallow ratio ( 1:1 or 2), while others will muck around for that time and not transfer much milk.

If he is gaining weight with the correct amount of nappies a day I would be happy, and you are keeping an eye on it so I think you are doing beautifully!

[blessedatlast]

i have my answer.. DS has lost weight.. upping the tube feeds til we get on top of it again, he has fed from me twice today if i even offer he screams and screams.. not happy.

he wont have a sippy cup, i've tried.

[onthefly]

Oh no, not more stress!
Is he on solids? What sort of food is he getting?

[blessedatlast]

He has started solids, but he wont eat either! we were doing BLS and lately he hasn't been reaching for anything I offer. I had some banana today and mashed it, when I tried to feed it to him he screamed.. He's only just 6 months adjusted, I don't care if he doesn't eat, I want him to feed

[Maruschke]

BAL sorry hun, when can you ask his paed about it?

[Tegam]

i have my answer.. DS has lost weight.. upping the tube feeds til we get on top of it again, he has fed from me twice today if i even offer he screams and screams.. not happy.

he wont have a sippy cup, i've tried.

Oh hugs.

I wonder if he has gut issues with all his history? Have you thought of a naturopath? One specialising in bubs?

[Jennifer13]

I think you need to get some more support on this, hun. As he was so prem and had issues with his bowels, you're doing exactly the right thing by giving him bm. Have you seen a good LC? The trouble is, while he's going through breast refusal and being tube fed, you're in a bit of a cycle. He isn't hungry enough to bf more, but you can't afford for him to lose much weight so you need the tube feeds.

Has a supply line been suggested as an alternative? Do you think he may be frustrated if your let down isn't happening quickly enough for him?

[Razzberry]

It must be so distressing for you BAL. My dd had breast refusal due to pain association from severe reflux pain and I felt helpless and extremely anxious. I dont have any words of wisdom, I wish I did, just hope someone in here can help or a health professional.

[onthefly]

The milk would be more important than the food, at this point, unless you can get him eating more calorie-dense stuff. What a difficult situation! I wish I could actually offer something helpful to you.

[ellasmummy]

Is his ng fed ebm fortified with anything like duocal etc? We used to put duocal in dd1s solids and her ebm, then special formula once the ebm ran out. Couldn't do blw as she would only spoon feed, but still got most calories through her milk. Even once she moved to a bottle she always refused liquids, was always borderline dehydrated. Did he have a lot going on in regards to ventilation, suctioning etc? I only ask because we figured dd had massive food and drink aversion, and all the Drs (and dh and I agree) seem to think it's to do with so much facial trauma (intubated for months, suctioned for months, ng tubes, o2 etc in and out) combined with reflux and other conditions she has with a floppy windpipe etc.

[blessedatlast]

He's losing weight because he's purely not drinking the volume of milk he needs.. I know because we've been here before.. based on his adjusted age and weight he should be on around 720mls of EBM He gets 450mls through the tube and if he's only feeding from me twice a day for a short amount of time, there's no way he's getting the volume..

Ellasmummy - Yes he has tube feeds fortified with Alfare which is a prescription formula.

Jennifer13 - I have tried supply lines in the past, he wont latch onto the breast! He screams as if my nipple is hot chili!! I realise Iit's a bit of a cycle, but he's so tiny, he's not even on the chart for his adjusted age, he simply can't afford to lose more weight.. Last time this happened he was on full tube feeds til he gained then we slowly weaned them down..

Marushcke - His paed is useless.. No point talking to them, I know what I need to do and that's increase his volume..

Tegam - If he was having gut issues I would suspect the tube feeds would affect him.. They don't.. I have no idea why he refuses the breast.. I thought it was a developmental thing/teething etc, but this is beyond a friggen joke. It's been going on for about 3 months on and off.. Not sure if you remember but he was admitted to hospital with FTT and since then he's gained weight very steadily, even with a bit of breast refusal. He gained 120gms last week..

If he doesn't gain weight after 2 days of full tube feeds I'll make an appointment with the gastro team and we'll end up back in hospital. Praying I'm right and it is a volume issue. I am going to do groceries tomorrow then nothing else. I am going to spend as much skin to skin time as we can, and express lots. Hopefully all the skin to skin with no pressure of latching will work and he'll be keen to feed again. then I'll gradually drop the feeds. I'm not even going to bother with solids for now, it just causes more stress. He had not long started anyway, so wasn't really eating anyway, just playing. If he expresses interest again I will go with it, but I'm not going to try and feed him.. Breastfeeding is the most important thing and I don't have the energy to deal with more than one thing at a time..

Thanks everyone for your support and input, it is much appreciated. Just being able to vent is helping