Dreaded Reflux

Can anyone share experiences with their premature baby having reflux issues? Our girl is 3 weeks old now (born at 34 weeks weighing 3.7kg) and I keep being told how she is a healthy well baby, but that she suffers with reflux and that makes her oxygen sats drop. She's taking anti reflux medication, she has carobel being added to her milk, and they've decided for the umpteenth time to restart her on low flow oxygen because she holds her breath when she's uncomfortable. It's all incredibly overwhelming, I'd love to have her home. Some doctors say this is all normal and she'll be weaned off, others say she'll come home on oxygen and need carobel until she's on solids. I don't know what to think anymore.

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🤔🤔 my son had alot of reflux- the dietician changed his milk from sma.... do Aptimal pepti junior - i think just to see if he had a lactose allergy etc anyway he was on that milk and he was sooo much happier, even at the time he was tube fed from 24wks but when he was around the time of discharge , my milk dried out etc etc that's when we introduced the formula ..... We would see the feeding tub fill up again where obviously it didn't agree ... So perhaps you could ask the dietician 🤔🤔 moving forward, he was on that till 1yrs we slowly introduced cows milk and he's fine ! He'll be 3 next year. Sometimes it can all be down to how they make the formula, I think some are my hydrated more than others? Sorry can't recall the right terminology 🤣 it was something on them lines lol . Anyways I hope this is useful in someway ?

I know easier said then done but when our son was in NICU, we actually demanded that they stop saying , Ohh he's full term he can go home on oxygen etc etc - We actually didn't want him on oxygen incase anything happend, anyway we took him home 2wks after his due date , without oxygen.... I did plan to breastfeed that also prolonged our stay but yeah after 5months of pumping... I think my body just had enough♥️♥️

@Elle (i can't see waves) they've said to me as well if I was wanting to breastfeed I'd need to be at the hospital "much more often" but I haven't been able to do that. I have to take a bus for an hour each way and I'm just burnt out. I'm hoping if her reflux reduces I might be able to offer breastfeeding at some point but it really doesn't matter how she's fed as long as she isn't hungry for me. I had no idea a large healthy baby could have such issues with feeding, they don't seem to want to send her home tube fed so it's a waiting game to see how long it will take to be fully bottle fed with no oxygen dropping before she comes home. I just want to cry with the exhaustion and disappointment in all of it. I'd do anything for her to be more comfortable and be able to come home with us.

Awww that's awful, I remember when our son was transferred to a nicu closer to us As originally i was transferred to a london hospital as he was soo prem, I was lucky enough to stay at Ronaldmcdonald charity housing,, However when he was transferred to a nicu closer it was the same an hours bus drive but on the unit I would have him on my breast everytime I was there and then when I wasn't they would tube feed , Just to establish that feeding skill of that makes sence. I'm presuming they don't have rooms so you can room in with her? Towards discharge at our nicu they had 4 rooms and you could stay there everyday untill discharge or they could be taken which i understand , it's a progress but you'll get there xx

@Elle (i can't see waves) they have mentioned rooming in closer to whenever she's due for discharge, if it's available. I've no idea what to expect with that but I've been told it's strongly advised over just taking her home. Thank you for the advice and listening ear, it's been such a steep learning curve so far

Ohh yeah , so you would have your own room and she will be in a crib next to you 💓 there will always be nurses in the bay at our nicu they called the last stage ICR - Individual Care Rooms, we had a parents room with a fridge where we could store food and make breakfast in the morning etc - Lunch and dinner was normally take away or i think we could order but hospitalfood isnt always great haha , depending on how baby is some mums did it for couple of days to a couple of weeks, mainly they won't discharge untill A feeding routine has been established at least for coupke of days, They will most likely monitor how many oz she drinks and how many bottles before discharge, Also if they need to discharge with oxygen , they will give you all the vital information needed, A neonatal nurse should also do a couple home visits also normal from the unit 💓 which is also normal 😊 Ahhh always here to lend an ear - I love to help people if I can 😁 Neonatal life is a tough one no matter what gestation 💓

My boy is nearly 6 months and it feels like the spit ups and sick spells never end. Never full feeds worth. But I am always covered in sick it actually gets me really down.