Sort of silent reflux; question about medication/management

[MsPickle]

Back story: my dd is now 3 weeks old. Her weight gain had been poor, I'm EBM. On NYE she was asleep on my chest when I realised she felt cold and too quiet. Lifted her up and she was grey and unresponsive. Ambulance to A&E, by 4.30 up on a ward after ECG, chest X-ray and bloods. (Bloody terrifying. The hospital called it "acute life threatening incident", I call it "scary as shit life threatening incident"). Straight onto donperidome and omeprazole as suspected silent reflux. Lots of tests until a barium swallow showed that movement along her oesophagus was so slow that the solution barely reached her stomach. Treated still as silent reflux as no specific name for what she's doing. As a separate issue she had a posterior tongue tie snipped yesterday afternoon. Today she was weighed by mw and has gained 200g since weds which delighted me as it's her first gain! (Ds had similar tongue tie and reflux although less dramatic and once he snipped and then finally on ranitidine he turned the corner and became a chunky chap!)

Questions: has anyone else seen the incredibly slow oesophagus and how long did it take to get stronger? What do I need to watch out for with the donperidone and omeprazole long term? And we've also been given carobel to go into expressed milk. I've not expressed today as we needed to have her on the breast as much as possible post tongue tie snip so she's not had carobel. She's pooed a lot this evening and has been clearly less uncomfortable so I wonder whether the thickener is disagreeing with her but I'm loathe to stop it completely in case it's the thing that, in the words of my dh, beats the Russian roulette of whether she chokes or not again.

Sorry, I know this is long but wanted to give as much info as possible! We're keeping her upright/elevated, especially after feeds. The idea of having to bring her round again/use the resuss training we had in hospital is very very scary.

Any help/pointers to useful information gratefully welcomed! (I'm already reading little refluxers thanks to an mn tip on another thread)

Sounds really scary

The tongue tie may not be a seperate issue. I have read that the tongue motion triggers peristalsis and if the tongue is not doing the correct action then the whole digestive system can be out of kilter. The slow oesophaugus may well be because of the tie.

There is a really good group on facebook. Search for tongue tie babies support group and ask to join.

Are you doing stretches after the tt snip to prevent reattachment? Posterior ties are prone to rehealing and feeding alone is often not enough to prevent them healing back together.

Thanks Mawbroon, I'll look for the fb group. Yes, we've got a massage plan for the tt, it's been 3 years since ds1 was done and the clinic has been refined! Great information sheets etc and know where to go for follow up. We've been told to start massage on day 3 then change to a stretch massage at day 10. (Need to buy dentinox gel tomorrow).

And yes, it really was scary. New year on my own with a little baby in hospital I never want to repeat (dh had to stay with ds). They announced happy new year on the tannoy and it was one of the most desolate moments of my life! But at least it all meant we saw the right people quickly and knew what we're dealing with much quicker than with ds.