help please-failure to thrive

[NoForkNKnife]

Back story. Dd was born at 29 weeks due to placenta failing and IUGR. She is 5 months actual tomorrow (11 weeks corrected) and now 7lbs 3 (2lbs 2 at birth). She is falling off her own growth curve which was way below the 0.4th percentile.

Theyre doing lots of tests to see if she has a condition thats causing the slow weight gain. But I think one if the biggest problems is she doesnt ever seem to want to eat. I have to force her. The past few days its taken over an hour to gwt just 60-90ml down her. Lots of screaming but mainly just refusing.

Shes on high calorie formula and today ive been told to give up expressing bm (she uses to have 2 bottles). Shes been described meds for reflux and also extra calorie supplemts ontop of the high cal formula.

I know she's a special case. But have a mkssed something? Are thede any tricks to get her to feed? Since shes come out of hospital she's doubled in weight, but her the amount of milk she'll drink has hardly increased.

thanks for reading this far. Any advice will be very much appreciated.

:( :( What a difficult start for you and your dd.

It's great you are involved in tests to check for any underlying condition causing this lack of weight gain and lack of appetite (by the way, the preferred term for 'failure to thrive' is now 'faltering growth' and this should always be used as the old term is just awful, IMO).

Not sure why you have been told to stop expressing - was there a reason for this instruction?

This extreme aversion to feeding is something I don't know much about, however I have read it can be linked to oral aversion, which sometimes arises when sick babies have had a lot of messing about with tubes and force feeding....if this strikes a chord with you, maybe the HCPs involved can help you with different ways to feed her which won't trigger this aversion?

Hope things resolve for you.

Thanks tiktok.

I dont think its an aversion to the bottle as such, but more the feeding. She'll happily take a dummy even when screaming through a bottle. She hasn't had tubes etc for nearly 3 months.

just been out and bought a different brand of bottles and teats. Made no difference. Currently fast asleep with teat in her mouth. It's like she fall asleep to get out of feeding. As soon as I put her down for a break, she wakes and plays.

Panicking a bit. Think I may have to call the hospital if she wont feed. But who do I call? Could she just be ill? She's pooed twice (unusual) today and very farty.

[Sad]

:(

How does she want to feed?

Would she be ok at taking 20 mls, then a gap, then another 20 mls then a gap?

She took 60mls in the end. But it took 2 hours! Luckily she fed quite well this morning so overall down by about 50-100mls for this time of day.
She seemed to quite like being fed upright with her tummy to my tummy. Awkward! But maybe helping if it is reflux?

Been told to stop the bm as she needs the calories more. It could make the difference of over 100 calories a day so it makes sense. She was ebm for 2 months then mixed for 3. Hopefully she's had enough benefit from it.

She's conked out now. Feel like joining her!

I thought breast milk was more calorific? Surely if you can bf then that's better for baby? Especially if they had a bit of a traumatic time, extra nice to get snuggly cuddles with mummy?

(I've had lots of problems bf tt baby & I think if you can bf then why not!)

Because there isnt enough calories? Bf and bm have I promise you been promoted and pushed heavily while in the hospital and also after. I bf my elder dd and was determind to again.

BUT, my baby isnt growing. She has fallen iff the growth charts and they now think something serious is wrong. She's been on the highest calorie formula they can prescribe and now having extra calorie supplements added. The two bf she was having have at the best, half the amount of calories. This at the momemt is significant. She needs every calorie going .
Please don't make out it's the wrong decision when you clearly haven't got the major point of the problem. This is not a bf vs ff debate. I'm trying to do the best for my poor baby who is struggling to grow.

Mikktray, I apologise. I've never snapped at anyone on here. Emotions are high. When youve managed to get to 5 months I had started to relax and think things were fine. Being told there could be something seriously wrong was a shock.

Is she only on milk, or have you introduced other food? I'm sorry, I don't know the protocol for premature babies. Could she be ready for other food?

I don't really think anyone should be commenting about OP stopping bf unless theyre a specialist pediatrician used to dealing with underweight premature babies as its an unfair position to put Op in.

I don't really think I can give you much advice tbh as its a very specialist situation that is already being dealt with by a pediatrician.

the only one tip I can offer is go out and buy a load of different baby bottles with different teats in the meantime...my dc (who was not prem or ftt) struggled to feed from certain teats and would barely feed from some.
if you can get to your local boots or even online look at medulla (think they do really specalist teats) mam teats, nuk teats etc. my baby was rubbish with the regular shaped teats eg tommy tippy and Phillips avent it might not make any difference but you may just find one your dc prefers

Thanks, badjar. Preemies are weaned between 5-8 months. Its been discussed, but we decided she wasnt ready. She can hold her head well and sits in a bumbo. But the dietician said signs that she's ready include putting things in her mouth-she doesn't. Maybe a few more weeks? A high calorie weaning diet of butter and cheese has already been discussed!
She took 120mls happily this morning. Really hoping it's going to be a good day.

X-post! Thank you, name. A friend advised this yesterday and I went out and got some cheap asda own. These have been recommemded by 2 different sources for preemies. Didnt make much difference yesterday, but this morning has been the best feed in a long time. Also started reflux meds yesterday so this may have made a difference.

Sorry NoFork, I should have realised you'd have discussed it!

This might sound a bit strange, but have you talked to your docs about adding a tiny bit of milkshake mix to her milk? it's extra calories, my friend did it for her babies when they wouldn't drink as they were more likely to enjoy the different flavour.

Milkshake mix - er, for a tiny baby still not out of the woods yet???

Why would a baby in this situation benefit from powdered and flavoured sugar with articifial thickeners in it?

You're trying to help, goodjam, but that is one terrible idea.

OP is listening to docs and dietitians and that's the best way! :)

badjar I did do this for dd1 after 12 months as she refused milk then an I was concerned. But that was cows milk.

She threw up a bit about 2 hours after her feed. I stupidly picked her up from sleeping to stick a bag on her to collect a urine sample.

Thanks for everyones help. Fingers crossed she feeds ok at her next feed.

How is she with holding her own bottle?
Would she be safe if you held her tummy to tummy, and let her have access to the bottle? Sounds messy, but might be worth a try? Or, maybe a really silly idea. Have you tried an open cup? Doidy style?

And, as she will take a dummy, can you find the closest thing to a dummy teat as a bottle?

Or, and you need to take advice on this from more than me, I beleive you can get dummies that will take medicine? Would they take enough to let her take a milk feed through several of those?

Are you sure she isn't sensitive to anything in milk (cows milk proteins? lactose?).

I know you've moved on from expressing, but would she ever take BM from a bottle? Or from you directly?

Hope your LO picks up soon, you've had a very stressful few months. Sorry if any of the above is preaching to the converted, or tried and rejected.

Hi next, thanks for replying. She is a bit young (corrected wise) and not able to hold the bottle although she does try sometimes.
She loves the dummy. She will out right refuse the bottle but will greedily suck on her dummy. Good tip about the teat. Im not sure there is a flat teat? She has been having the tommee tippee soothers that are kind of a squashed teat? Not sure im making sense.

I think they'll probably test for things like lactose intolerance in the tests they are doing. If she is intolerant to lactose/milk, would she not be being violently sick ? She is definitely a more sicky baby than my first but not sure it's excessive.

Feeling really washed out. I've got to wait 4 weeks for the next appointment and apparently the bloods take weeks because they get sent to the childrens hospital. I think it's the metabolic conditions that take a while. Anyone have any experience of what a metabolic condition is? I'm a bit scared to google. Also scared of genetic testing that was mentioned....

I have no experience of using any of these products op but thought id send you a link to them incase they're helpful.

(they're alternatives to regular bottles)

www.medela.com/UK/en/breastfeeding/products/breastmilk-feeding/special-feeding-devices.html

if the link doesn't work just copy and paste into your browser address bar I have no idea how to do links on here sorry

Am glad to read of some better feeds recently NoFork, hope that's been continuing ?

Just wanted to say I think "faltering growth" seems a much more positive term than FTT - glad to hear of that change tiktok

• Hope it will turn out to be very appropriate for your wee dd OP - just a small faltering in her own unique growth curve

Don't think she has to be chundering to be intolerant to something. It might just be that it makes her fractious, or uncomfortable, and so she want to aviod it.

DS1 was CMPI, diagnosed at weaning (traces in BM were OK). It wasn't til my mother pointed out I was probably sensititve to milk also, as I'll only consume it in cooked or processed form (lasagane, cheese, icecream), and would never add cream to pudding, drink milk, or even really eat cereal. So although I don't have anything diagnosed, it is likly that my body knows avioding milk is best for me, iyswim.

My 3 week old took a feed from a diody when he refused to latch after a tounge tie devision, it really is worth a go!

As mentioned above, if there was something really wrong, it would have been picked up before now. The metabolic will just check she is using all her calories properly - ie if you can get more into her, can she use them to grow, or is she missing one step to converting milk to energy (think diabetics can't process all food properly, but give them insulinm, and they are fine sort of thing).

Genitic - the big ones will have already been screen for in the heal prick test. It might provide some clues about how to help her if something is wrong. It doesn't have to be scary - just think of it as finding a way to solve the current issues.

dare i slip in some [hugs] ?

You're all so kind.

aidan thanks. I haven't really looked into Bliss. At the time if being in hospital etc, it felt like 'we'd got away with it' and everything was going really well. Incidently, this weight gain issue has been present from birth. From in utero in fact. It could of course all be put down to the IUGR and placenta fail (they never sent the ruddy placenta off for analysis).

If it makes a difference I'm a type 1 diabetic. Excellent control during pregnancy.

name I will have another look at those devices. If I remember though, it's more for bf? I'll check it out.

next-thanks

Her last feed took 1.5 hours. No screaming-in fact none at all today. She just wouldnt wake up (wide awake now). Noticed this the last 2 days-she keeos sticking her tongue out and it looks like she's trying to eat her top? Significant?
Took 70-80mls so overall today about 200mls. Aiming for 450ml.

Off to entertain dd (3) at library now. She's a bit neglected and im really snapping at her.

So sorry to hear of your rough start OP but glad that feeds/screaming has been getting a wee bit better.

My DS hated feeding due to heavy suctioning/CPR at birth I think, so bf didn't work and bottle wasn't always easy. Jiggling teat in mouth, different teat shapes, precise milk temperature (quite warm) were what we used. Also he preferred the cartons of Aptamil rather than powder but given your DD is on special milk they probably don't make that in cartons!

Reading your post and you saying she likes the dummy made me think of these?? I know they're designed for eg twins but maybe you could give her a cuddle and pop the teat in so it's like a dummy but she's feeding herself while you cuddle here?

My friend whose son had open heart surgery at 9 weeks and HATED feeding had various techniques - most effective was to prop him up between pillows on the bed, put dummy in to calm him down, turn down lights, then when he was calm do a very fast and ninja-like pull-dummy-out-shove-bottle-in, and that would usually mean he'd take in 90-120ml.

Hope you get to 450ml today xx

tiktok, the milk shake was on the advice of my friends doctor, which is why I asked the OP to check with hers. I didn't suggest it as a "try this'.

NoFork, I'm glad the feeding seems to be going better, how have you got on so far today?

NoForkNKnife
my DS was born at 31 weeks, he had expressed milk which initially had a calorie supplement added to it; he then went on to exclusively BF when he gained a bit of strength.

5lb 1oz in 5 months seems quite good in my experience ALERT NOT MEDICALLY TRAINED!
I was told to try to average 2-3oz per wk weight gain. Am I a bit dim in thinking you have done more than this?

I do realise things may have changed over the last few years but if you want to still express or BF than do so.

My dd1 also had weight gain problems. She was prescribed high calorie formula but wouldn't take a bottle at all. I was advised to mix her high calorie milk in with baby food (The boxes of pwdered stuff - not what I'd ha e chosen to wean her on, but the formula was meeting her dietry requirements). She was older than your dd, but when she finally accepted the spoon (took ages) her weight gain really improved. She also had reflux.