Well ok I will post my stories. With my eldest; he was born at just over 37 weeks but may have been a bit earlier as they chopped and changed my due date so many times. He had problems breathing when he was born and with keeping warm so they kept having to suction him and rub him down on that warmer thingymajig for nearly two hours, they thought he would have to go to special care but in the end he didn't. I tried latching him on after the two hours but I couldn't get him to latch, he kept crying and crying with hunger but all the mws said he'd either get the hang of it or I'd have to go to formula, simple as. I asked to use the hospital breastpump, I was told that wasn't for those without premature or ill babies. I asked to see the BF counsellor before we were discharged and the MWs said she was busy; so I cornered her when she was doing her rounds just before we were discharged begging her for help and she was really rude to me.
When we got home I could only feed him with a combo of hand expressing right into his mouth and by bottles of EBM. A lovely midwife did help me to get him latched a few days later, although his latch still wasn't great and the damage had already been done. Really high levels of jaundice run in OHs and my family anyway; and with an early baby who has not been feeding well-it was catastrophic. One fairly elderly midwife who came on the Friday a week after he was born said I needed to get him into hospital right away as he was illuminous-I had expressed my concerns to all the rest of the visiting midwives and even staff in the hospital as he was pretty yellow while still in there and they were dismissive.
When we took him to A&E he'd lost over 14% of his birthweight and his blood was so thick and conjealed it was hard for them to take samples; he was also completely unresponsive when they took the blood. The SCBU staff took him away for 4 hours before they allowed us to see him, we honestly had no idea what was going on and they would not tell us. When they came in they told us he would be on a drip for 4 days and also had 4 lights on him, one under him, one on top of the incubator and one on each side. His level was over 550 and well above the needing a blood transfusion line but as it wasn't found to be ABO incompatibility jaundice; they didn't give him one. They said he hadn't been getting enough to eat (which I had been trying to say for so long!) and said I should just switch to formula; I did express some milk but they didn't encourage me to express any more and I felt so much like I failed him that I thought I may as well give up.
I was, miraculously, able to get him to latch when we got home and that midwife helped me get back to almost EBF (with formula here and there because I just wasn't confident a lot of the time that I could feed him myself), but BF him was very difficult as he always had a very shallow latch and even had problems feeding from bottles; he also had terrible reflux, dismissed at the time as colic. At 7 and a half months he just started refusing to BF at all and would never latch on again. I am so grateful I managed to BF him for as long as I did as most other babies with his problems (we now know he had severe tongue tie and lip tie) cannot directly BF at all but the whole experience of him being in hospital and them not listening to me on how ill he was and not feeding properly and everything else, I still get flashbacks to it now and I have had to have counselling and anti-depressants several times since directly linked to what happened.
With my second youngest, he BF really well from day one but at 8 weeks he developed mucusy, green bloody diarrhoea, sometimes with solid bits of poo in, which he had many times a day, a really red rash on his face making his eyelids look like they were bleeding and really bad foul smelling bottom wind, up until that point he had gained weight really well so I didn't bother getting him weighed again but at 15 weeks the diarrhoea still hadn't resolved and he started to look quite gaunt and just not well at all, previously the GP and HV were dismissive saying the green diarrhoea was probably 'just normal' but when weighed he had only put 8oz in that prior eight weeks and when I got him reweighed two days later-he had lost it all. His nappies started to be dry and he was really starting to look ill; he was getting a lot of milk in (I could hear it gurgling angrily in his stomach
) but it wasn't doing him any good and I felt awful. It was like my milk was sucking the life out of him. I did try cutting out dairy, eggs and wheat and it made no difference. Although I now think it is likely to have been soya that was one of the culprits-I don't know for sure and it could have been multiple things. My second eldest had a similar problem with the weight due to allergies but his digestive system and bowel movements stayed completely normal. So both of their red books showed an identical pattern. The lady at our local clinic said she'd refer us to the resident paediatrician in the main clinic in town, but when we got there it was a young inexperienced HV we had been referred to who kept saying I probably had no milk and that was the problem, and I'd need to express every feed for a week to prove it wasn't-until I did that they couldn't help me. I showed the lady both red books and she just kept saying 'well you will have to express every feed'. I am no good at expressing at the best of times and I knew it was an allergy problem but it was falling on deaf ears. I also knew from experience with second eldest that if I went back to my GP she'd just try and prescribe me soya formula (only one tub mind-and expect me to buy it from then on!). So I tried him with comfort formula and the improvement was just shocking, he put on over 1lb in five days and was just a much happier baby, and I found I could still BF him for the night feeds without the symptoms cropping up again-but sadly one night at 5 and a half months he just didn't wake up for a feed that night and wouldn't latch on when I tried it during the day-so that was the end of that. He still has problems with soya and now with dairy products, although he can now finally tolerate small amounts; larger amounts cause him vomiting and diarrhoea, so now I feel guilty that perhaps the comfort formula wasn't the best option and ideally he should have had a prescribed formula but that just wasn't something that was available. Until recently I couldn't even look at his red book because it was just a reminder of things going wrong but when I did; I was so furious to read that HVs comments which I had never before dared read, the one who dismissed it as a supply problem, because she wrote 'suspected allergy absorption problem, if weight gain does not resolve by next visit, referral to dietician recommended', so she either believed me but let me believe otherwise; or wanted to be writing the 'done' thing in his red book. Either way it was no help to us
Thanks for listening xx