Baby born at 22+5 in NICU. Trouble with milk. Now what?

[Squiff70]

My daughter is 19 days old and has been in NICU since her birth at 22+5. She is a twin and tragically we lost her brother at 4 days old.

Every day I've been using a hospital pump every 2.5 hours day and night as well as breast massage and manual expressing and not had anything more than the tiniest drop of milk, not even enough to get in a syringe.

My GP started me on domperidone yesterday in a bid to kick start my supply after different meds failed to work. Yesterday I had a blood test to check my prolactin levels so I'm waiting for those results.

My daughter has NEC but they're nearly ready to start giving her milk. I've signed a consent form to give her donor milk but I really wanted to breast feed. The infant feeding team are telling me not to give up but I feel so demoralised.

Any advice would be appreciated, thank you.

You're doing all the right things! Domperidone is amazing and it's likely you'll see really good results.

My first wasn't quite as early as yours (23+2) but feeding was very challenging for us as well. But we got there and she was discharged EBF and continued feeding until not long before her 3rd birthday. The support in hospital for us was very good - are you feeling well looked after by your feeding team?

Do keep at it, the benefits for micro premmies are enormous. It's wonderful that you've accepted donor milk. I was eventually in a position to donate lots when DD was in hospital; if it was my milk you got then I'd be honoured to be able to help with the stopgap while you get your supply up!

Oh I'm sorry, I posted too soon. I also wanted to say I'm so sorry for your loss. Do you want to tell us the name of the twin that passed away? I cannot imagine the grief you'll be experiencing, all while trying to cope with the trauma of hospital for your surviving baby.

OP the same thing happened to me, it was such a source of stress and anxiety and looking back I wasted so much time and energy focusing on my milk supply when I should have spent it elsewhere. You have agreed to use the donor milk so she will get BM either way, try the dom (my trust for whatever reason do not prescribe it) but I tried loads of natural things that didn't really make a difference. I used to get about 30 mls max after a 30 minute pumping session and I remember everybody else was complaining about leaking up to 100mls from each breast per night and their freezer drawer was full. I felt so inadequate as I felt this was the one thing I could do to help my baby.
Make sure your iron levels are satisfactory as this has a big impact on supply and don't stress too much about it. So sorry about your little boy and thinking about your little girl

Thank you both for your replies and I'm sorry I haven't posted - things have been a bit full on here as I'm sure you understand.

I've been on the domperidone for 2-3 days now and still not getting any milk whatsoever. It's as frustrating as it is time consuming and utterly devastating that I can't give my daughter what she needs. I'll keep trying but she's 3 weeks old tomorrow and I'm losing hope.

Squiff your name is familiar, I think I may have posted on threads of yours before.

So sorry for the loss of your little boy, and that your little girl is so early. You must be under an unimaginable amount of stress right now.

Hopefully the Domperidone will start to work, but have you heard about supplementing with Fenugreek? This can help with milk supply as well.

You are doing an amazing job. Whatever happens with your milk supply, remember that you are a fantastic mother to your daughter. You are there for her, loving her, and making the right decisions about her care.

Keeping everything crossed for you and your little girl.

I don’t have much advice but I just want to say congratulations and sorry for your loss in equal measure.

My baby was in special care (not prem but poorly) and it took a while to establish breastfeeding. Please don’t lose hope and keep getting support from infant feeding, they were fab with me. You’re probably already doing it but staying hydrated is really important and taking care of yourself. You sound like you’re doing amazingly 🌸

Ps you’re giving your daughter everything she needs, you’re her mum and you’re there for her. Be gentle with yourself, you will get there.

I'm sure the stress is what's causing your lack of milk production. Try not to worry about it and comfort yourself that the diner milk is just as good. I had to express milk in the hope it would stop NEC and luckily it worked. Breast milk is a great help

Squiff - any update? Thoughts are with you. Your thread inspired me to get pumping for the milk bank again.