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HELP!!

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SukhR Wed 10-Jul-19 16:34:41

Hi,
I'm wondering if there is anyone who can shed some light on my problem.
I have a 24 week son whose had a rough start in life. In a nutshell, he was born at 38+1 with an undiagnosed cleft palate. He feeds using dr browns bottles with a special teat and valve and takes this well. However when he was in the special care baby unit they thought he had aspirated and when they did an X-ray they discovered his heart was on the wrong side.
This condition known as dextracardia also means that occassionally organs do not develop and other mid line problems can occur. Further investigations revealed he had a sliding hiatus hernia (his stomach and pancreas were sliding up into his chest) which the surgical team decided could be left until he reached 1.
However he became more sick and was vomiting bile and became septic. At 12 days old due to his increased bilious vomiting he had to have a laparotomy and they discovered he had malrotation of the stomach. They performed a Ladds procedure and he has recovered well from this. He spent an month in ITU but was eventually discharged on ebm via bottles. During his stay in hospital he was feeding every 2 hours but was showing poor weight gain (he's less than the 0.4th centile and is not following a curve- more like flat-lining along) therefore the decision was made to switch to formula.
We've tried 5 different types of high calorie formulas but they either give him severe colic, or he vomits after his feeds or he just doesn't like them and refuses to drink. He suffers from reflux and is on domperidone and ranitidine for this (we tried omeperazole but it gave him awful diarrhoea).
Fast forward to today and he is on concentrated aptimil but is still feeding every 2 hours and continues to show poor weight gain (deviating further from the 0.4th centile with no curve just marginal gains).
I began weaning him at 17 weeks and am finding it so stressful as it's so difficult to find a time to feed. After a bottle feed he either goes to sleep straight after until his next feed or once he's fed I've got to hold him up for 30 minutes to avoid him vomiting. By then he's not hungry and he doesn't take the food and just cries when I try to feed him.
I spoke to our dietician today and she's suggested concentrating more on balanced meals than the milk to get some weight on him but I can't break this 2 hourly feeding cycle to get anything in him.
I don't want to keep force feeding him and make him associate eating as a negative thing so really don't know what to do.
I'm at my wits end and any advice would be greatly received.

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