Is my baby 'failing to thrive'? Warning: long story!

[BebeBelge]

I am so confused at the moment I don't know what to think so would really appreciate some MN wisdom. This is a long story so please bear with me.

When I was 30 weeks pregnant, ds2 was diagnosed as having a Congenital Diaphragmatic Hernia - a life-threatening condition giving him a 50% chance of survival. To complicate things we were living overseas at the time and my husbands employer would not pay for the baby's treatment at post so myself and 2 other dcs were shipped back to the UK to await Ds2's birth. DH had to stay overseas to work but came over when I was 36 weeks and DS2 arrived at 37 weeks. It was a really stressful time uprooting the kids and staying with MIL without DH not knowing if DS2 would live or die, being too scared to buy him clothes and to even let myself hope for the best.

Anyway, he arrived, was whisked off to Intensive care without even a cuddle , he had an operation to repair the hernia on day 2 which went well. He remained in Intensive Care on a ventilator for another few weeks nearly dying a couple of times due to complications such as a tension pneumothorax, but eventually he came off the ventilator and was moved to the neo-natal unit for another few weeks before he could come home. A better outcome than we had dared hope for! Anyway, while he was on the ventilator, he was being fed through a tube in his nose (I was expressing milk for him). Once he was off the ventilator he had to learn to breast feed. Bless him he had not got a clue what to do with my nipple as he had completely lost the sucking reflex. During his 5 weeks in hospital and whilst being fed through the tube his weight remained at his birth weight (2.8kg). This was considered quite positive as he had been through so much and on so many drugs for so long so they hadn't really expected him to gain weight during that time and were hoping that he wouldn't lose any. Once we started BF, his weight drppped by 100g or so over a few days (normal) and then started going up again. So far so good.

However, even though he has gained weight continually, he is not gaining quickly enough according to the doctors in the UK. He is below the lowest percentile for weight and today at 16 weeks he weighs 4.5kg. Aside from his weight, he is a happy baby, smiles, interacts, sleeps well (just started sleeping right through the night last week), is trying to roll over and generally seems very settled. My other 2 dcs both started out roughly on the 25th percentile for weight but by a year old they were both round about the 0.4th percentile. I am slim, 5ft4 and DH is a very slim 5ft11. Just mentioning this to show that DS2 was never going to be a monster baby with our genes!

I did an experiment with my weight charts earlier and I plotted his weight gain by inputting his weight at 5 weeks when he came out of hospital as Week 1, his weight at 6 weeks as week 2 and so forth (ie. readjusting his age seeing as he didn't grow at all the first 5 weeks anyway) and that would put him at roughly 20th percentile today at an adjusted age of 11 weeks which isn't a million miles from where my other two were at that age (similar birth weights too - 2.9kg and 3.0kg).

One thing I should mention is that he has loads of wet nappies and dirty ones but his poos tend to be very liquid and a bit greenish. I am convinced that this is to due to a foremilk/hind milk imbalance as I have too much milk (always have) and have been trying various tricks to make sure he gets more fatty hindmilk but nothing has changed. He has reflux disease due to the hernia but he is on medication for this and he very rarely shows any symptoms or even spits up (much less that the other 2 dcs in fact).

Anyway, the reason I am now asking for opinions is because we are back abroad and I am kind of on my own with this. I am in touch with the surgeons and dietician back home via email but it is not the same. I am going to see our Paediatrician here later this week and am expecting her to say that he is too small as local babies here tend to be very big & chubby. Also, the dietician back home said that she would suggest early weaning from 17 weeks if weight gain was still not satisfactory but I am a bit nervous about this.

So, do you think he is failing to thrive as such? If so, what would you do about it? Is early weaning a solution and how would I go about this anyway? If I never took him to be weighed then I would not be worried about him iyswim as he is all in all a very happy baby. I know mothers are supposed to trust their instincts but after the last 6 months of stress and worry, I am not very confident in my mothering skills anymore (but that's a whole other thread!)!

Thank you so much if you have read to the end. It really was a loooong saga . I really would appreciate all and any thoughts on this!

Thanks in advance!

PS. I am in a different time zone so I have to go and cook dinner now. Will be later after kids in bed (Uk lunchtime-ish)...

It certainly sounds like you have been through the wringer but I think you are doing very well. Considering his history you are being wise to be cautions. All I have to say is that at 16 weeks he is the same weight as my completely normal EBF DS1 who is now a completely healthy 3 year old.
From what you say it doesnt sound like failure to thrive but at the same time it is best to check with professionals and go with your gut instinct.

Thanks Nicechair! Yes, I know what you mean about being careful. As I said, I will go to the paed later this week anyway, but just wanted to get a bit of perspective and find out about real life percentiles!

Geeklove Can I ask what your son's birth weight was, and was anyone ever concerned about his weight gain?

Should also say that DS2 is EBF and despite numerous efforts to supplement, just will not take a bottle. I am going to try him again later today incidentally as I have not tried in a few weeks.

obviously you need to seriously consider the medical opinion on this one, but can you speck to a lactation consultant. Not sure where you are but the LLL are an international breastfeeding support group who may have a branch in you're country.

From his corrected growth chart though he seems to be doing fine. (My own personal oipnione not a medical one).

Wow, what a lot you have both been through. I second what everyone else says but I would think it would be completely expected that he would be a lower weight than average. His development sounds great, well done

I personally wouldn't wean early but I agree on getting professional advice

I must stress to everyone that I am not playing free and easy with my son's health. I absolutely will listen to the professional advice. I just wanted to straighten things out in my head. I will go to the paed later in the week as planned and discuss everything with her and then email back to my surgeon and dietician in the UK to see if they concur and take it from there.

Having had 3 kids in 3 different countries though, I am very aware of differing cultral aspects to birth, breastfeeding and childcare so whilst not doubting medical opinion, I have learnt to ask why a doctor is suggesting something and to research myself and try to understand the proposed treatment first without blindly accepting it.

I do understand your words of caution though and I take them on board. Thanks - it's nice to know people care, even strangers, as I have felt very isolated for such a long time now.

Should also add that because of his condition, his left lung is very underdeveloped and it has always been expected that he would use up more calories than a 'normal' baby just for breathing possibly leaving fewer calories for the growing part!

Right, really, really must gfo and cook dinner now. DCs starting to moan!

What a story....it's no surprise that you are going to be anxious for a while after such a difficult and stressful start. You are looking very closely at the one thing that can be measured in terms of numbers (understandably but not, actually, all that helpfully!) which is weight.

On the info here, your little DS has made a good recovery and you have been working really productively to make bf work for you both. He is not 'failing to thrive' - a very old fashioned term which is now normally supplanted by 'faltering growth'. His growth is not 'faltering'.

Please don't worry much about foremilk and hindmilk. If you do think this is an issue (making him uncomfortable, fighty at the breast, refluxy) then you could talk with a breastfeeding counsellor or other qualified person about 'adjusting' it. The usual and easy way of doing this is to block feed, but this reduces the volume of milk made and going into the baby, and it's prob not a good idea with a baby who prob still needs the volume to grow normally. Green poos are not an indication of anything much, in the absence of any other symptoms that link to them.

So I second the advice to seek real life, informed breastfeeding help.

Hope things work out for you soon.

Thanks tiktok! But what does 'faltering growth' actually mean though? He is only putting on an average of 100g a week. Surely that is faltering?

Unfortunately, I can't get any RL bf support due to the language barrier

Congratulations and so sorry to hear you have had such a scary time. Second all the posts about expert advice etc but I think your baby sounds just fine. Developmentally on course and just gaining at his own pace. My dd was breastfed for first two weeks, but I then had to switch to formula as I was very poorly. She piled the weight on whilst breastfeeding and continued to for first two weeks of formula feeding then her feeding tailed right off. Was struggling to get anything like the recommended amount of formula into her. Inexplicably she has stepped her intake right up again in the last few weeks. She is now 5 months. As a result of all this, her weight gain is all over the place but no one has been in the slightest bit worried. Except me! I was expecting to breastfeed like dd1 and totally lost confidence in my instinct like you have done. At one point I went to the clinic in tears, worried sick about her intake. Whilst my daughter lay gurgling on the scales, grinning at the HV and trying to roll off. The HV said just look at her? Does she look like she is failing to thrive? I got a proper telling off about fretting about intake and weight gain, very refreshing actually and just what I needed. Reading between the lines, your instinct is that she is fine, but you have lost confidence in your instinct. Try and trust yourself and enjoy your baby. Good luck!

100 g a week is within normal limits. Weight is only one of the aspects of health that should be assessed, anyway.

'Faltering growth' just means a baby/child is growing exceptionally slowly - it's an observation, not a diagnosis. I found this www.gosh.nhs.uk/parents-and-visitors/general-health-advice/a-z-child-health/faltering-growth/ which is reasonably clear (though it is wrong about separate charts for bf and ff babies - the same chart has been in use for a few years now).

Where are you? There is English language bf support in many countries. If you search for La Leche League, with the name of your country in the search field, you will usually find an English language option. I don't know if you are in Belgium, but if you are, here's the English link:

www.lllbelgique.org/autres-langues.php

Thanks again tiktok. I'm not in Belgium but I had a look at the web site and although there are no groups near me, I found an email address for English support so will give it a go.

Ds1 was born in this country and the midwives in the clinic told me to feed for 10 mins each side and if he was still crying to give him formula . I was in for 5 days and had to lie to them about how long he had fed for!

Good luck, Bebe :)

Where on earth were you when midwives told you that???!

bebe

My son was full term and was 3.12 kg at birth. After a brief stay in NICU due to fluid on his lungs he went home and we established bf. he went down to 2.8 kg and was 5 weeks onld before he was at birth weight so there was concern about weight loss. He was fine it's just his jaundice hindered weight gain and slow growth is a familial trait.
Hope this helps.

sorry, really no advice other than la leche as previously mentioned, just wanted to wish you luck sounds like you have had a really hard time x