I could really use some help troubleshooting the multiple issues we've had trying to breastfeed, including latch and food allergies.
I am an American, living in Eastern Europe. The healthcare where I am is lackluster, at best. There is also a MAJOR language barrier, so I am having a hard time trying to figure out what is going on with my daughter's health issues.
5 week old baby was born at 37 weeks (c/s) due to Twin to Twin Transfusion Syndrome (I lost my other daughter at 24 weeks) and lack of growth. When she was born, it was evident that she hadn't grown since 33 weeks. She was 2450 grams at birth. She had a perfect Apgar score, but was very lethargic within an hour of birth and did not wake up for 48 hours. I repeatedly tried to get her to latch in the hospital, but she just would not wake up. The nurses (who did not speak English) kept saying I had flat nipples and could not breastfeed. I successfully breastfed my other two children, so I tried to ignore that. They eventually pressured me into using a shield, which somewhat helped, but the baby had a very weak latch. They ended up giving her 2 bottles of formula, saying she was too weak from hunger and that's why she couldn't latch well. She was discharged from the hospital, having lost 12 percent of her body weight and had severe jaundice and nothing was done about it.
Fast forward to being home, she nursed constantly and for long periods of time, but was still very lethargic. Her latch was slightly better, but she would fall asleep within 5 minutes. She was having a lot of bowel movements and urine was clear, so I assumed everything was fine. Pediatrician (one from hospital) said maybe she was eating too much because her bowel movements increased to 12-15 times a day. They were normal, breastmilk diapers, yellow, seedy, not too loose, but just very frequent.
At her 2 week checkup, she had lost 100 grams from her discharge weight. So, the pediatrician did a weighted feed after only 10 minutes. She only drank 30 ml, so he said she wasn't getting enough. (She normally ate for 45 minutes). So, I pumped and gave her 40 ml bottles of expressed milk after each feed for 12 hours. She started refusing the bottle and breast and was very lethargic, more so than normal. So, we took her back to the pediatrician, who sent us to the hospital. Turns out, she was severely dehydrated. They immediately made me stop breastfeeding and gave her NeoCate formula. They said she probably has a dairy allergy and to wait at least a week to try to b/f again. They ran a battery of tests on her, which all came back normal.
She was discharged from the hospital 2 days later and began spitting the NeoCate up constantly. She was back in the hospital 2 days after for dehydration again. So, they started using a thickener. This really didn't help and the formula was so thick, they had to cut slits into the tops of the bottle for it to come through. She was seen by a neurologist the 2nd hospital stay, who diagnosed her with hypotonia of the face, neck, and trunk. She was still spitting up the NeoCate and now constipated from it, but she was gaining weight, so they released her.
After a week, I had a lactation consultant come out to try to get back into b/fing. We tried breastmilk for 24 hours and finger feeding and she seemed great. No more spitting up, no gas, etc, but she started having more frequent stools. I was so worried about her getting dehydrated, so I started back with formula. The LC wanted her to see a GI before working with us again.
It's been 2 weeks since the LC visit, 3 weeks since hospitalization, and she is now 3260 grams. we saw the GI yesterday. She also thinks she has a dairy allergy, but didn't test for lactose intolerance or anything else ( which is what I was worried about). She wants her to stay on the NeoCate (which is causing her to spit up and choke, to the point where we have to take shifts watching her all night) and add high calorie formula to it. I told her my intention was to go back to EBF. She said I could start adding one bottle of pumped milk a day and build up to 1/2 BM, 1/2 NeoCate within a month, but to stop immediately if she has frequent stools. She doesn't want to try to pinpoint the reason behind it, just slap a bandaid on it with the NeoCate. I think it's ridiculous, because if she tolerates the breastmilk, why would I continue the NeoCate that is causing so many issues?
At this point, the baby can't even latch onto a bottle well, since she has been used to the tops slit for the thickened formula. So, she definitely isn't latching, despite trying a few times over the past 24 hours. I also just gave the baby 90 ml of breastmilk and she never spit up or fussed at all. I should also mention, I have been pumping this entire time and my supply is great ( about 800 ml per day, baby only eats 600-650 ml).
How should I proceed from here, in case she starts having frequent stools again? What could also be causing it, aside from a dairy allergy? I've cut out dairy for 3 weeks now, so it should be out of my system, but I'm wondering just in case. Also, how can I get her to start latching, since she isn't at all? I really can't help giving her bottles as of now, but I'm willing to try anything at all.
I forgot to add, the prescribed her reflux syrup for after she eats, but she spits up immediately after eating, before I can dose the syrup.