feeding and weight gain issues - please help!

[clairec81]

Hi everyone, been reading all your posts for some time and decided to finally post my own story and seek some well needed advice. After a very complicated pregnancy which included bleeds at 7, 8 and 11 weeks, discovering i had low fluid at 19 weeks and my waters breaking at 24 weeks i finally gave birth on Christmas Eve to my beautiful daughter at 33 weeks by c-section weighing 3lb 1 1/2oz. We had been told to prepare for the worst and that it would be unlikely she would survive due to underdeveloped lungs. Well she surprised everyone and was off the ventilator after 6 hours with no breathing difficulties. She stayed in the NICU for 6 weeks with a few set backs - infection, and we were delighted to have her home. Since then we've been really pleased with her however her weight, although still gaining, is not what her HV or consultant would like it to be. She is almost 12 weeks old and weighs 6lb 2oz and has dropped from between the 2nd and 9th centile at birth to below the 0.4th. She takes between 70 and 85mls every 4 hours which i've been told is ok but she is very dribbly and i'm not sure how much she's actually getting! I have spoken to a dietitian who has prescribed a high calorie milk and possible thickeners to help with dribbling. I'm getting myself very worried and panicking that she may need to go back to a nasal gastric tube. Sorry for the long post however really keen to here from others in similar situation or for any advice.

 

[grumpymoo]

Hello and congratulations on your baby daughter!

I am sorry to hear she is having problems with her weight and feeds, hopefully you will get some help from your dietitian.

Some of the mums on here should be able to help you loads.

Good luck

 

[Marleysgirl]

So she's gone from a birth weight of approx 1.4kg to a current weight of approx 2.8kg in 12 weeks - just over 100g a week? That's about what my Andrew is now achieving, but our Paediatric Consultant would rather he put on 180g/week apparently. Not sure how she wants us to achieve it, short of force-feeding him

Where are my manners! Hello and welcome to the preemie section. You'll make good friends, read inspiring stories, and hopefully read the answers to some of your questions here.

What milk have you been prescribed? If it's NutriPrem2, then we've got an NP2 thread in the Formula Feeding site of this forum. If it's Infatrini (or something like that!) then Sherrie's baby girl Millie is on that milk, and she made stonking weight gains.

I don't really have any suggestion to make, sorry. Ensure you always have more milk available in the bottle than you think she'll take, so you're not restricting her to 85ml max. Andrew is pretty dribbly just now, but he was getting frustrated with medium-flow teats so we had to move onto fast-flow, and I think that's what is causing the dribbles. So you might want to review teat size, in case you're using too fast a flow.

 

[clairec81]

Thanks for the advice and just listening. Erin's now on Infatrini so hearing from Millie's Mummy about her experience would be great - if someone could put us in touch would be really grateful. Consultant didn't really specify exact weight gain he would like but i know that she should be heading above the 0.4th centile which she's currently under - STRESS!

 

[Marleysgirl]

Sherryberry's (Millie's mom) most recent thread is here: https://www.babyandbump.com/premature-babies/287742-smiley-millie.html so if you go to her profile, you can send her a wall message or private message. I met her in our NICU, our babies were in there together! I'm jealous of Millie's weight gain, Andrew is on fortified EBM and isn't putting on as much weight.

Andrew is so far below the 0.4 centile that I downloaded the "low birthweight" charts from WHO and started plotting him on those - he's below the -4SD line!

 

[sherryberry79]

Hi girls,

Millie was born at 26+3 but was the gestational weight and size of a 24weeker at birth, 620g/ 1lb 5oz. Millie is now fully fed on demand and as Marleysgirl says, she is on Infatrini.

She has made some good weight gains but I have to say, recently she has not been gaining quite as much as she was previously. She is gaining 2-3 ounces per week now. Our health visitor has suggested that we keep an eye on her and if her gains don't improve she may be referred to a dietician.

However, yesterday we went to our out-patients appointment at St James's in Leeds where she was weighed, and on their scales (not for the first time) she weighed heavier. She weighed 11lb 5 oz in Leeds on Monday and tomnorrow (Wednesday) she will be weighed at our health centre where I'm sure she will weigh lighter. The consultant she is under in Leeds seemed unconcerned about her weight gains, and in fact was pleased with her weight since the last time he saw her in Jan. He said her weight gain had been "significant".

Now I am thinking that 2-3 ounces per week is good enough for me and I wish the HV had not mentioned a dietician as god knows I have enough to worry about without her weight!!

I think Millie's main problem is that she does not really take enough volume of milk. She is a real grazertoo, although she sleeps pretty well through the night, during the day time she likes little and often. Last week I lept a record of what she had taken over a 24hr period and it was 560ml total which seems pretty low to me, but the consultant seemed fine with it! I have considered weaning her, but he consultant has asked me to wait until she is 5-6 months corrected, unless she starts to show signs of being ready before then. So for the minute we are going to continue with the Infatrini and see what happens. It's a bit of a minefield isn't it!!

But clairec81 I hope you start to see more progress on the weight front soon I'm sorry I could not be of more help, maybe they can add fortifier as well as thickner? Maybe you could see a dietician? And welcome to the forum, keep us posted about her progress!

Marleysgirl, long time no speak....hope ur all well, Millie sends Andrew big hugs!

 

[Marleysgirl]

You see a specialist in Leeds? Wow, that's a way to go!

Andrew's drinking about 600ml/day, split over 4 meals (now sleeping 12hrs through), so they are matching each other again. He weighted 9lb 4oz at the last clinic weigh-in, I'll get an update this week from both the clinic and then the hospital (where he always weighs less).

As regards the weaning, I've been reading on the IUGR yahoo group and it seems like "lack of interest" is the biggest stalling point in small babies, and many of them do wean late. After Andrew's initial interest in food, he now seems to be eating just because I feed him, and not because he wants to, so I'm just going to keep at the one meal of puree/day until he's old enough to do BLW.

 

[clairec81]

Thanks ladies, it just helps speaking to others - fed up of seeing and hearing about all the babies in our family at the moment who are putting on 9 oz per week and are 'thriving', and if one more person tells me Erin is sooo small i'll scream! Hopefully the infatrini will help and looking into latex teats as heard these may be better. Sherryberry what bottles and teats do you use? spoke to dietitian yesterday who has prescribed thickener as well so will try that. Also when did your little ones sleep through and did you push them to? - still setting an alarm at 3am in order to gain those much needed calories. (Erin will be 12 weeks tomorrow/5 1/2 corrected).

 

[sherryberry79]

Millie is under St James's for her liver. Because she was on TPN for so long at birth it caused some damage to her liver, it seems to be correcting itself thankfully, but at one point they were testing for biliary artresia which can be a serious condition requiring surgery. We don't have to go back to Leeds for thre months now!

 

[clairec81]

Meant to ask you Sherryberry, was Millie able to tolerate Infatrini straight away? Early days i know as Erin's only had 3 feeds but she has thrown up 2 of them and was previously not a sicky baby! She was on EBM in the NICU and then we gradually introduced Aptamil so i suppose its quite a shock to her system changing straight over! Did Millie manage it with 'normal' teats or did vary flow need to be used as its slightly thicker - and bubbly!

 

[sherryberry79]

Hi Claire,

Millie was introduced to Infatrini at around three and a half months old, the doctors added it to my EBM to bump up the calorie content of the milk. For a long while she was on two parts EBM to one part Infatrini. She took to it pretty well, one of the nurses old me that some babies really seem to like it as it is so creamy. But I guess that can have the opposite effect too, maybe it's a little too rich for Erin? She was still having most of her feeds down her NGtube at that point too, so maybe that helped her acclimatise to it?