Baby keeps loosing weight

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Sorry for posting here I'm desperate for some advice.
Had my baby in august, at a week old she was put back into hospital due to jaundice and not feeding (took 10ml every 5 hour) finally got her feeding and we left 3 days later. Her weight slowly increased (7.6oz upon leaving hospital, 11 7ozlb two week ago) but then she has dropped a few oz, she was weighed literally 5 minutes ago and she's now 9lb 😭 I'm distraught, what is going on? We've got an emergency app with a paed tomorrow but don't know what to expect, I don't want her tube fed again 😭 can anybody offer some help?

Have you tried weighing her in your arms on your home scales? Or in a big bowl on your kitchen scales?

If she seems happier and more relaxed now you have changed formula, I'm really surprised she's lost weight.

Is she growing out of her clothes, or going up a nappy size?

I googled photos of that submucous cleft palate, IIRC my dd does have something along those lines but as she rarely cries it's hard to see it. I will double check when she wakes up.
It's been a horrible time, around 31 weeks she stopped moving in me, I was in hospital 2/3 times a week (I did make a post on here. Everyone advised me to keep pushing for answers, eventually I had a planned csection at 39w) but from 34weeks I was having growth scans and she'd only gain 2oz between scans. Then she was born she was ever so sleepy, practically going 6hrs with no feeds, don't know if her not moving inside me and the sleeping constantly had a link? I thought I was finally getting the hang of things
Thank you all! I know you're not Drs, but I was terribly scared upon hearing she'd lost more weight. She was born on the 75th centile, then dropped to 25th then to the 9th and now she's right on the bottom 😭

No she's still in size 1 nappies, we did go to size 2 but they were up at her belly button. So went back down but they aren't tight on her.
Yeah we were given some clothes for up to 13lb and they were tight around the feet area, but she's in a 10lb sleepsuit today (another gift, wanted to get it worn) and it seems baggy

Just a thought - does her skin taste salty? I'm just wondering if she might have CF? Usually hungry but slow to gain weight? Hopefully not and I'm sure drs would have thought of this already xxx Big hugs xxx

She's awake now but hard to look into her mouth I'll get the dr to look tomorrow.
Her legs do taste salty?! She sweats quite a bit but never really noticed a small or a taste. Her hands are just normal same as her face, just smells like baby?
She's so tiny that 9/10 after her being asleep her legs will be out of her sleepsuits, I really do hope it's nothing serious I'm scared out of my wits but do like to be prepared for anything

OP you're doing everything right - the emergency paeds appointment is the best thing for your baby.
I had a very similar experience with my DD when she was 8 weeks old, she lost weight until she was off the scale and I felt like nobody would take it seriously - GPS and HVs were no good. She had a paeds appointment as I insisted on one and a blood test showed she has a mild adrenal condition, which was then quickly sorted and is medicated.
You're doing all the right things! 

Do mention the salty taste to the paeds dr as this and "failure to thrive" can be a sign of CF. Just in case xxx

This is an induction of how baggy her sleepsuit is, where my thumb is, is where her hand is so there's still a good amount left

Had app today, she was 5kg
Needs to gain weight between today and Thursday otherwise she will be admitted in

Wishing you all you all the best OP and hope she gains

Sending love OP 

for you. You're doing all the right things, keep going.

5kg is exactly 11lbs. Could the 9lb reading be a mistake?

Is she weighed with only a vest and nappy every time? That would cut out inaccurate readings due to different clothes.

I’m sorry to read this OP - you must be so worried. My baby was born on the 91st percentile and also had a tongue tie. We had it corrected at 9 days of age but his weight gain was never good. He didn’t lose weight but he was extremely slow to gain. I had his tongue reassessed at 3 months of age and his tongue tie had grown back. He was also diagnosed with a milk intolerance at 9 weeks of age. He’s 15 months old now and his weight gain is still really poor.

Anyhow - the fact your baby is having all their milk and still losing weight does indicate there is an underlying cause for this. Sometimes it can be cardiac issues and sometimes it can be digestive issues.

I imagine you will be admitted even if your baby does gain some weight because she does need investigating.

I know you will be worried but if there is something wrong then the sooner it’s diagnosed then the sooner they can try and fix things. Try and think of being admitted to hospital as a positive thing - which it is - because it’s the first step in finding out what’s wrong and treating it.

The best of luck

Cross posted with your post about her weighing 5kg today.

Surely the 9kg reading was an error then?

Yeah for a baby to go from 11.4 to 9 lbs in what, 12 days I don't think would be possible without amputation.Rogue reading!

There could be error in scales /reading

but best she have full assessment with paed.
Ask about c.f.. /metabolic disorders (Can mean she isn't processing the feed properly)/check development e.g. muscle tone. Etc. Be prepared for further tests.

Dd was tiny and didn't grow was eventually diagnosed coeliac but your dd prob too young as she won't have ingested gluten yet.

So she's lost 7oz, which is not great but not as desperate as being 9lb!

Hang in there, hopefully the medics will sort it out!

And the not moving much prenatally could be indication of underlying condition so get to paed for full assessment.

No she's weighed naked but today was with nappy vest and sleepsuits

Did mention about tasting salty but they said it wasn't possible as there is no genetic factor; they checked her throat and nothing wrong although I swear I saw a tooth.
Trying not to worry, my other dd was 11lb at 12 weeks so there's not a huge difference but obviously weird if she is loosing weight. But again we've got clothes first size (up to 9.5lb or 10lb) and they still fit her, 0-3 is baggy, around the legs and arms

Oh dear, it sounds like you’re having a rough time. I always found that the HV was incredibly quick to worry me (both my children lost weight, had jaundice, etc) and catastrophised every situation. I refused to see her again after a few weeks and self referred to the dr, who said there was nothing at all to worry about because both were happy babies who just took a while to adjust to feeding etc. I’m not saying thag your child doesn’t need to be seen tomorrow, just sharing my situation and saying please don’t worry too much about what could have caused the weight loss until you have seen a real expert. I really hope that your baby starts gaining soon.

Ask the doctor to check your child's adrenal function and salt levels.
My daughter couldn't absorb salt (naturally occurring in breast/formula milk) and this prevented growth.
Relatively rare condition but simply treated (large amounts of salt added to feeds)
She turned 18 this weekend and is fine.
Hope your child is ok

Hey there! How much does he drink in a day? Is he taking the volume he needs, how long does he take to feed? Only because my son was taking an hour to feed and expelling more energy than he was taking in. We have also since then found out he had an underlying heart problem (8 weeks) so may have contributed to him working harder than most babies (don't worry, he's fine) xx