I had this OP. It's horrible and heart wrenching - but - is better than leaving them with you if they had had an infection. The problem is that little ones with an infection can go downhill incredibly quickly, so it's basically a race against time, meaning they HAVE to start the invasive/intense treatments before they even know if there's an infection or not. It's the only way for them to have a decent chance of fighting it if there was one.
I also found the support pretty appalling and I don't think I processed any of his birth for months and months because I was just focused on - OK when can I get transferred - oh, right, they aren't going to transfer me - then when can I get discharged - then how do I pump milk (having simply breastfed with my first baby this was all new) and get it to him and how do I (or DH at the least) spend as much time as humanly possible with him. I found DH was much more cautious than me and didn't want to spend long visits because he didn't want to disturb him while sleeping/eating/etc and seemed to think that us being there would stress him out and he needed to rest, whereas I had the opposite view - that our presence would be soothing to him and we should be holding him as much as we could. (But whoever out of us was right, he was absolutely fine in the end.)
The good part is if he doesn't have an infection and is breathing better, they will likely be able to move him to a children's ward instead of NICU and then you can stay with him (although on a crappy pull out bed). You are allowed to ask for the timescale they think this will happen.
With pumping, it's normal that the pump will only produce tiny miniscule drops and they all get stuck in the pump mechanism and dry up before you can hoover them with the syringe. If the milk gets slightly diluted by e.g. a container that wasn't 100% dry don't throw it away, it's still valuable. If you can hand express then that is usually more effective at producing droplets you can properly hoover up.
Try to see 3 different goals
- Keep the baby fed (this could be your milk or formula, don't worry - I guess donor milk is not appropriate in this situation, but formula is OK.)
- Keep your milk flowing/milk supply stimulated. For this goal you don't need to worry about how MUCH you are getting - it's just about stimulating the breast regularly. Don't panic, all will come good.
- Keep the connection - when you can't be together physically, look at videos of the baby with sound. Keep a muslin in your bra and swap it each time you see your baby so that you have something that smells like them too. Or swap clothing - bring home the worn vests, take in your t-shirt from the previous day.
Once you get to see baby, skin to skin contact is magic and really helps with milk supply and bonding. It doesn't matter if you didn't get to do it at birth - it's useful whenever you can do it. If you're struggling with mobility you can ask the staff to help with kangaroo care - they should be able to do this. In the NICU if you are a visitor and have short visits then it might not be possible. You CAN still get the benefits of this by doing it later.
Once you get to feed directly you might find that they have been feeding large amounts e.g. 50-70ml at a time - this usually then means that the baby gets frustrated at the breast/breast alone is not enough to sustain them because your supply just isn't making that much at this stage. Do not panic. They told me to feed for 10 minutes each time every 4 hours because he would get tired 🙄 - I knew this was crap advice but it took me a couple of days to get my head around what to do instead.
So - the ten minute thing is because newborn babies are pretty low on energy and one that has had breathing issues from fluid on the lungs, even more so. They will do 2 kinds of suckling at the breast - active swallowing (you will hear "shnuk...shnuk...shnuk...") and then a sleepier kind of soft pause-suckle-pause-suckle and seem to be asleep. When they say do 10 mins and then stop, they mean that the active sucking is the part that is getting a decent amount of calories in. BUT, that doesn't mean that the sleepier suckling is useless. It's definitely not. They are still getting milk. However, because babies this little with starting problems are low on energy, they do need a bit of a boost. What I did was roughly every 3-4 hours, I'd sit up and do what I thought of as a "proper feed" - I'd change him first so he was a bit agitated, then I'd ask them to bring the top up. While waiting for this, I'd feed (breast) one side until the active sucking ended, then wind, swap sides, feed the other (breast) side until the active sucking ended. Then wind, and offer top up which had usually appeared/was warm by that time.
In giving the top up, I did paced feeding, which means holding the baby at about a 45 degree angle (or more upright if you feel comfortable) and the bottle as close to horizontal as possible, rather than vertical. This means that they will not be overfed from gravity forcing milk into their mouth. However, even horizontal bottle feeding is easier than breastfeeding and will help with that all important infusion of extra calories. You can also give frequent breaks this way which is how they will feed during BF. This is a short info - google paced bottle feeding for more info.
After the top up didn't seem to be wanted any more, if he was asleep I let him sleep. If he was awake then I would wind him and put him back to the first breast again, and just let him feed for as long as he wanted to, until he was totally asleep, or until I needed to do something else like go to the toilet, eat, sleep. I let him feed sleepily like this as much as he wanted in between the "proper feeds". I think there is a misconception that all of the "sleepy feeding" is bad - some say that it expends more energy than it gains them - I understand that this is incorrect, and it's beneficial, it's just that initially while your supply is catching up, you want to get the top up in before they get too deeply into the sleepy feeding part.
Lastly don't be afraid to keep asking for a plan for how you're going to phase out the top ups, if indeed that's your long term plan. For DS2 we found once we got home it seemed to make sense to consolidate them all into one feed rather than 30ml here and there after each feed, and DH would give it just before bedtime.