A bit of background.. my baby was born after being induced-EMCS at 36+6 after she stopped growing at 34w. She was admitted on to the neonatal ward where she couldn't take breast or bottle so was tube fed for the first two weeks. After her discharge she still struggled to feed, breastfeeding didn't work out as my milk only came through on one side and even then could only pump an oz every few hours so we added EBM to her formula. She was first referred at 2 months old but she temporarily seemed to start feeding so we didn't go after discussion with her dietician. Fast forward to 7 months and her feeding amounts are still described as 'sub-optimal' and she's now began choking on her milk! As you can imagine it is just awful when this happens, usually multiple times per feed. My question is, how can speech and language help and has anyone else experienced anything like this?
She also has an so far undiagnosed bowel problem (she very very rarely passes stool by herself, she has been on glycerin suppositories since 2 months, had a negative biopsy for Hirshsprungs Disease and is now being referred to a Gastroenterologist). She is going for a coeliac screening, still under the dietician, got CMPA and is under the paediatric team at our local hospital and surgeons at the big children's hospital. However, she has climbed from 0.4th centile to the 2nd centile and continues to gain weight.
Honestly, I'm at my wits end, fighting with doctors, gps to make sure my baby is getting the care she needs and deserves. Seeing my child in pain every single day and not knowing how to help. We've had to go to A&E/ out of hours numerous times. We've tried apple juice, orange juice, boiled water etc.
Has anyone please got any advice for me? I feel like I'm failing her, like I should be able to help her and I can't!
This was only meant to be short and now it's all rambling and probably doesn't make sense..