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 reflux meds are you on and do you feel the reflux is under control? 50% of babies who continue to reflux beyond 12 weeks (I guess this would be 12 weeks corrected) have underlying cows milk protein intolerance and the reflux will not be controlled even with meds unless CMP is removed from the diet. Infantrini and the other high calories milks are I think all cows milk based.
My son was born at term but was FTT and fell off the charts until we realised at 4m that a lot of his problems were due to CMPI and soya intolerance. Once that was sorted out and he was on omeprazole for the reflux then things improved, he fed better and he started to gain weight.
The signs associated with CMPI can be divided into gastrointestinal (reflux, poor weight gain, mucus or blood in poo, wind, abdominal pain) skin (rashes, eczema, red ring around anus) respiratory (cough or wheeze) and behavioural (unsettled, poor sleep patterns etc). They can have one or a combination of signs. The only way to diagnose it is an exclusion diet for a period of 6-8 weeks.
I appreciate there may well be more that this going on with your daughter and I don't have experience with premmies, but this is common, and often overlooked by the medics until they have tried everything else, so worth bearing in mind.
I hope she ceases to 'falter' soon, I remember only too well how horrible it is to be worried at every feed.

Hope trip to library with older dd went well today too ?
I'm sure it's easy to be a bit snappy when you're a bit worried about your youngest.
Nice that you made the effort to do something especially for your older one - I hope it worked out well for you all

Such a lot of replies; Thank you.

Feeding has gone much better so far today. Upto 320mls. She's bought a bit if that up though v at 2 feeds-i wouldn't say a massive amount. Both times at least an hour and half later? Does this sound like reflux?

Those podee bottles look interesting! If things don't improve might be worth a go.

She's gaviscon and ranitidine. Dies thus make their poo less watery too? The thickest one ever just now. I must admit im starting to think reflux or intolerance. When on the nnu and being monitored, her heart rate would drop qnd she'd desat after feeding. It improved so they didnt investigate, but its a sign of reflux. She's just spent the last hour screaming inconsolably. Really sounded like pain..

Im sorry if I've missed anything out. I also havent answered you individually-sorry. Holding sleeping baby and on phone. With one hand its difficult.

One last thing. I think the hv has been 0lotting her weight incorrectly. She seems to be miscalculating her corrected weight. Although dd was a 29 weeker, she was very close to being 30 weeks. When the hv works out her corrected weight she just subtracts 11 weeks. But the hospital calculate it from her actual due date-it works out a week different. So in fact, she hasnt fallen anywhere near as far off her curve as it looks. If plotted the same way and consistently, it looks much better. She put on 5oz last week but theyve plotted it as 5oz over 2 weeks. Am I making sense?

We near enough got to the target of 450ml yesterday! Thank you all so much.

Had a lot of crying and screaming in the evening around feed time. Lots of stretching her back out. But it's so much better. Feeds still taking over an hour which is new .

baking she hasn't really got many of those symptoms. She's always been a great sleeper and will sleep through. In fact if I dropped the midnight feed (as she's conked out and I force 30 ml down her) she'd go from 8-7! Too scared b to do that.

The support on here is fantastic. You often b get told 'don't worry, she'll be alright" end of conversation in rl. It's great to just be able to air it all. [Flowers] and to you all.

Thanks miaow, im definitely thinking reflux now. It's not every feed, but when she starts screaming is horrible. Like you said, shes kicking and trying to push it away, arcing her back etc.

It seems worse as we go through the day. Don't know if that's significant. 290mls so far and last feed was dreadful. We should still hopefully reach about 450 again.

another suggestion but obviously one to check with your pediatrician about first

my ds was a pretty rubbish feeder and lost quite a bit of weight and I replaced one feed a day with a jar (dont flame me) of cocco vanilla pudding. it was just like thick milk (and tasted of chocolate) so he had no problems eating it in fact he bloody loved it.

the reason i did it was one jar was about 300 calories I think...as opposed to his formula which was about 90 calories for the same amount....(dont know how many calories you babies milk is though so this might be a rubbish suggestion)

the pudding i got was available in all supermarkets can't remember the brand it had a green top. I just used to check the backs of all the milky puddings and buy him the most calorific one I could find.

(he wasn't ftt but dropped from the 98th centile at birth to between the 25th and 0.4th by 16weeks) so was under paeds a while.

to be honest things really improved for us once he started properly weaning he now eats so much where previously we were lucky to get 4 feeds down him.a day. one of my friends also commented the other day what a rubbish appetite her ds had before weaning. I do think some babies just genuinely don't like the taste of milk.

hope everything continues to improve with your dd and that she turns into a little guzzler for you when she starts weaning well before then.

Do you still bf? My LO tends to bf in an exaggerated biological nurturing position - ie on my knee facing me with mouth round boob. He has done this since v young.
He did have a TT (now resolved) and some problems opening his mouth for which I took him to an osteopath.
What I am trying to say is that (even if you are bottle feeding) perhaps using a tummy to tummy position at all feeds could help? You say it helped today. & I know my LO prefers it - no idea why but I went with it!!
Good luck.

Name- youre the second poster to suggest this! I am seriously considering it.
trying-this definitely seems to help if shes fussing. Although when I was holding her like earlier the hv kept asking if she was on and comfy.

V bad weekend her. Unrelated. Her feeding has been awful too. She's only gained 40g in 5 days

Name-was it ready made or did you make it with formula?

Name-was it ready made or did you make it with formula?

I dont have any experience with preemies but dd was like this with botttles. We stared using colied. It breaksdown the lactose in the bittles and makes it easier to digest. It really worked for us.

Hope you are doing ok. Feeding up right might help until she grows a bit. I can't remember why!
Thinking of you.

I just wanted to say

Aargh posted too soon!

Just wanted to say that IUGR/reflux babies are difficult to feed & what you are experiencing is unfortunately common in that situation.

I had a 29 weeker with IUGR & severe reflux. Getting the daily volumes in was always a challenge. A real struggle.

The only thing I can suggest is looking at the flow of the teat, as the thicker high calorie formula can come through slower & the baby gets frustrated. Eg if you're using a newborn, change to medium flow, or else variflow.

Good luck, it's really tough.

Have you tried mam bottles? The teat is shaped differently and I read loads of reviews saying premature babies like them, I used then with ds3 who had iugr but I had him at 37 weeks after my placenta failed so he was bigger at 5lb 3, hope you get to 450ml.

Thanks, lots of. I've got the fast flow tEats now. Always been on at least medium.

Haven't tried mam.

Yesterday was a good day. She got to 420 with one feed to go. She was feeding quickly too. Then gave last feed. She only took 30ml and then threw it up all over me.

Bad start this morning. She was actually crying for her bottle (good start) but ive only got 70ml down so far (she will often take 120 first thing).

Ive been looking at dd1s charts. She was on the 9th percentile up until 6 months and then shit up to 75th! Dropped down to 50th and that's where she's stayed. Quite tempted to try a bit of solids to see how she handles it. What do you think? I was told to go for it between 5 months (shes 5 months).
Also, dd2 latest weigh in and length check actually show her weight way bekow the 0.4th (where its always been) but her length has shot up from weigh below 0.4th to 2nd! In a month! How can that be? Surely her weight would have gone up. Dh says he thinks it means her weight will follow soon.

If it's any help, I weaned at 26 weeks actual/15 corrected for my 29 weeker.

I did high calorie weaning & started everything at that time eg wheat/dairy.

For us, weaning didn't make that much difference & DS didn't make it above the 0.4th centile until he was over 1.

I wouldn't read too much into the length measurements at this stage, as they can be a bit inaccurate.

Thanks lots of.

She's 23weeks in Friday and I wanted to wait until 6 months actual...

Can you remember if your ds was a difficult feeder? If she gets to 90-100ml a feed is a celebration! shes on dualcal (?) Now to add extra calories to the infatrini.

He was a terrible feeder!!! It was a real struggle to get to 400mls/day - we were still doing late night dream feeds till 18 months of age to get the volume in.

Interestingly, his fellow IUGR/reflux friend from nicu was exactly the same.

Even now (age 4.5) he's a poor eater, dependant on high calorie milk & with little interest in food.

It's really hard going , hang in there as best as you can.

Its good to hear that its not 'unusual'. They make me feel like it is at the hospital. 270 so far today . Oh well. Thanks again.

I don't suppose you've seen the nuk bottles with a latex teat? The teat is a similar shape to some dummies.

Although I had nothing like the problems you have , my 33 weeker DS1 was slow to gain weight on milk alone. He dropped from the 50th to the 9th, although no one seemed bothered. He was a 'happy chucker' in that he would puke up lots of his feed, but had no other reflux symptoms.

I weaned him at 6mo actual (19 wks corrected) and he soon caught back up with his weight. He adored Ready Brek, yoghurt, sweet potato etc and absolutely gulped it down He is 3yo now and you would never guess at his difficult start to life. and still loves his food

Hopefully weaning will help you, grit your teeth and bear the next few weeks. My DS2 is 21 weeks so we will be joining you soon ourselves.