Hi so my little girl has had many issues since her birth. She was 2 months premature, very small and also came with a bowel and heart problem. Her bowel was corrected with surgery within a few days of birth. She had already had one operation on her heart and is awaiting her second one in the coming months. Despite all her adversity she is a strong and hitting all her milestones on time. The major problem we are facing which is driving us to the point of despair is her feeding. She has had an NG tube from birth which was used primarily at birth then she began to feed ebm via bottle. The feeding was going well and she was taking almost 75% of all daily milk via bottle. Once she left hospital we have been through sma, cow and gate, neocate and now alfamino formula added to her milk as she needs the extra calories to gain weight. We think we had a cows milk allergy hence the neocate and alfamino. She has now been home 3 months and her feeding is pretty much 100% via NG tube. She will not entertain a bottle 90% of the time, the other 10% she will have the bottle in her mouth but do nothing with it. We have been advised to try weening which we have tried ellas purées but again the majority of anything near her mouth either starts her crying or makes her gag and sick. Can anyone offer any help advise or been through something similar? We are so heartbroken that she will not feed orally at all and fear she will have an NG tube for a very long time
Thanks in advance