Faltering growth - ebf baby

[SpikeLeesLeftKnee]

Ds (6 months) is being referred for faltering growth. He was born on 91st centile and is now between the 25th and 50th.

He is ebf but we have limped on with it since day 1 - he had a tongue tie divided at 7 weeks which then reattached and we have only been able to get it redivided last week- despite initial one day success it hasn’t improved feeding at all. He has a shallow latch and despite multiple visits to breastfeeding consultants and infant feeding coordinators, he won’t latch better and they don’t know what else to suggest.

He has always been a nightmare to feed, won’t latch on properly and when he does is just constantly on and off the nipple. He squirms and is unsettled.he’s hungry but won’t latch on and stay on.

For the last three months he hasn’t slept for longer than 1.5 hours at a time and only naps twice a day (on a good day) once for 40 mins in the morn and then maybe 20-30 mins in the early afternoon and then nothing until bedtime where he sleeps for an hour and then wakes up ad infinitum.

During the day he is unsettled, can’t be put down, fights sleep, crying constantly. I’ve been back and forth to the gp and a&e because something is not right, at one point he did have an ear infection which was treated by antibiotics and a&e also prescribed omeprazole for potentially silent reflux but the bottom line is that he is so unsettled because he is hungry- the day after the second tongue tie division he fed like a dream and slept. A totally different baby because he was getting enough milk but it’s just got worse since.

He will not take a bottle. We try every single day and have now also tried a supply cup. He won’t take it.

I don’t know what to do. I’m at the end of my tether. I’d hoped that the second tongue tie division would help things but if anything feeding has just got worse- we are massaging the wound as instructed by the consultant who did the tongue tie to make sure it doesn’t reattach and so far it hasn’t but it feels utterly futile when his feeding hasn’t improved.

I am feeding him upto 20 times a day. It’s awful. I also have a 4.5 year old who is just getting the worst of me because he’s not getting the attention he needs despite my best efforts but both my partner and I are exhausted by ds lack of sleep/being unable to be put down/constant feeding.

I can’t go on like this. It’s a living hell.
I love ds but I feel like I’ve been constantly waiting for a turning point and it’s just never come. I’m not enjoying this and I feel guilty about it. I just want him to feed and sleep for at least a couple of hours.

Sorry this is so long. I don’t know what I’m looking for from this post, I just want things to improve and for ds to gain some weight and be content and nothing I do is working.

I'm sorry you're having a hard time.

The good news is that your baby is 6 months old and you can wean.

Go for it big time. Get him on 3 meals a day asap (I'm sure that's what the medical team will advise too)

We had to do this for my son's weight and my god it was a game changer.

Keep breastfeeding as much as he wants but get the food going. Spoon feed if you can.

Start with a good breakfast like weetabix made with formula (or expressed bm up to you) as that will be another milk feed for him.

Foods like peanut butter, avocado and coconut yoghurt are great early foods for weight gain.

He will naturally drop milk feeds as you increase solid foods and that is ok.

You can also introduce milk in a sippy cup. He doesn't need a bottle to have milk.

Agree with above. Go for it with weaning and don't do baby led weaning. Do spoon fed rich purée type meals (weetabix as above, spag bol with plenty of oil and proteins, porridge with cream/butter/nut butters or even an egg mixed through). Butter on/with everything basically. Don't focus too much on pure fruit/veg - these don't have too many calories.

Keep going with different cups, try open, straw, sippies.

Would you try an SNS? It's a tube to your breast that you can supplement with.

I'm so sorry you've had to go through all this.

Agree with weaning, I'm surprised that you haven't been advised to do it earlier.

A paediatrician advised me to fry my baby's food when he wasn't gaining. I also added cream and egg yolk to his food for calories. Basically try to get as much calories from fat into your baby's diet I the most concentrated way.

Agree with tote. You can also add mascarpone or olive oil.

Have you considered it could be silent reflux?

Has any one talked to you about a supplementary nursing system (SNS)? That would be a great way of getting more milk into him. What qualifications do the people who have supported you have? Who exactly divided the tongue tie? Have underlying health conditions been ruled out?

We had to wean at just over 5 months with my first (under paediatrician's guidance) due to similar issues and it went really well. We did milky breakfast like porridge, normal lunch and then yoghurt/rice pudding/egg custard for dessert after dinner. Obviously didn't start with that much- just built up to that over two months (particularly as there are more restrictions if you have to start weaning early) but made sure lots of milk and fats going into meals. She was so much happier for it- we never looked back.

@SpikeLeesLeftKnee I know you posted this a while ago but wanted to see how you were getting on now. I’m in the same position, faltering growth, tongue tie has reattached and waiting to see practitioner next week. DS also refuses bottles and dummies (feel like I’ve tried everything!) he also has poor latch and his sucking isn’t great even on breast.

did you manage to get your little one on a bottle? Did his weight go up? And has the tongue tie stayed detached?

Hi @SassyPants87

Im really sorry that you are finding yourself in a similar position- it’s absolutely draining.

Ive just read back through my original post and it feels like it was a lifetime ago and not two months.

Since I posted we have seen a consultant paediatrician (who was not very helpful at all) and also had weekly sessions with SALT who have been great.

SALT confirmed that DS tongue tie had definitely reattached and he has very restricted tongue movement causing his poor feeding / struggling with liquids from a cup or bottle. They were quite shocked by the way he breastfeeds and surprised that he was able to get any milk at all. They also noted that he had oral aversion likely as a consequence of the second tongue tie division/massages to his tongue we had been doing after the division.

Their initial suggestion was that we consider NG tube feeding him for a temporary period as he was not gaining weight and how often and inefficiently he was feeding. DP and I felt this was too drastic and would only cause further problems with aversions further down the line so I have continued bfing and we began weaning in earnest under the guidance of a dietician and SALT.

It has been slow slow progress with weaning and more often than not felt utterly futile and hopeless- DS really struggles with moving things around in his mouth due to the TT and he would not let anything near his mouth unless he did it himself so he would get incredibly frustrated but in the last week his progress has come on leaps and bounds.
He is now happily eating a range of foods- last night he had bolognaise and very little came out of his mouth- his tongue movement has improved significantly.
I haven’t been able to get him weighed over the Christmas break but from doing the trick with the scales (subtracting my weight on the scales from the weight of me and him on the scales) he has definitely put on some weight (about 500g by my estimates)

He still will not take a bottle. SALT suggested carobel mixed with formula or expressed milk and to give this out of a open cup which we had success with for one day but hasn’t worked since! However, I do think that his latch has improved since we started weaning- he never breastfeeds for longer than 5 mins at a time but his latch is deeper and he does not pull off as frequently.

Dietician also suggested that he may have CMPI after he had mucousy nappies after having yoghurt so the formula milk we have been offering is soy based, he is being weaned dairy free and I have excluded dairy from my diet but tbh I am not entirely convinced that he does have an intolerance.

The main thing is that since he has started to eat more solids and his bf has become slightly more efficient, he is like a different baby. He still does not sleep well (still wakes every 2 hours at night) but in the last week or so has consistently napped for 1.5hrs in the morning which is unheard off.

When he is awake he is just more content and can be put down in his jumperoo or on the playmat for ten mins to amuse himself (again, unheard of).

We will continue on with SALT and the dietician and hopefully not have to go down the route of NG tube feeding.
Im very cautiously optimistic that we are making progress and weight will continue to be gained.

Sorry this is very long but I wanted to give the full picture and hopefully your little one improves soon. It is a dark place to be in when you are so stressed about trying to feed your baby and it’s not working as it should - i hope you get some answers and solutions from your appt. If you want to chat/sound off about it, feel free to send me a direct message.

@SpikeLeesLeftKnee How's your son now? I'm glad things eventually got easier for you. I'm in a similar situation and have been advised to syringe formula into my DD after each feed.

I wanted to ask- how's BF going for you now? Is he feeding less often?