Daughter is in special care to establish feeding (possibly unnecessarily?)

[verbify]

My daughter was born early last week at 35+4 days. She needed breathing help for two days (complicated emergency birth contributed).

She is now a week and a half old (i.e. she would be term), and is doing very well - she was moved out of NICU info special care. She weighs approximately 2.4kg. She is doing a combination of breastfeeding and tube feeding.

We are concerned that there isn't clear steps or a plan to move us home. They say she needs to be eating independently, but we can't be there 24/7 (my wife was discharged so she can't sleep next to her and feed her at night). She managed yesterday entirely on the breast, no tube feeding, but they claim that she is small and therefore needs a top of tube feeding at night (they also say there's no target weight so I'm confused what they are looking for). The tube feeding almost seems like drugs -she sleeps deeply and strongly.

I wish I could bottle feed, but my wife is worried if we do that we could mess up the breastfeeding. My wife wants to be there as much as possible and she's struggling with lack of sleep.

My feeling is that had she be born like this (this weight+level of feeding), we would've been discharged - that she's eating well from the breast and shows no other signs of needing to be the.

Does anyone have experience with being in special care and trying to establish feeding? The setup doesn't seem conducive to feeding - we can visit whenever we like, but even with booking a hotel across the hospital, it's hard to be responsive.

Congrats on your baby. My DD1 was in NICU and then SCBU and we also ended up not being discharged as quickly due to feeding issues. The set up is terrible for establishing feeding. Have they given your wife a hospital grade pump to borrow and is she pumping every two hours overnight? Its brutal. What milk is baby having through the tube?

If your wife is hoping to EBF, it might be worth reaching out to a local IBCLC to give you some practical advice or asking the SCBU nurses to refer you to the infant feeding team in the hospital. We were advised to move from tube feeding to cup feeding, which helped as well. The neonatal doctors where we were had a min amount that DD1 had to gain for two days running to be discharged. It was a massive amount! The IBCLC i used was horrified.

I ended up giving formula top ups after breastfeeding to give her a boost, get her weight up so she could be discharged and then we concentrated on bf at home. We were not successful at EBF for other reasons but I did bf + formula top ups for 9months to keep DD1s weight gain at a stable rate. That might not be the route you and your wife want to go down, but if you talk to an IBCLC, they might be able to help you come up with a plan which she feels comfortable with and gets you all home.

You could also chat to the SCBU team about "rooming in". Our hospital had a small ward next to the SCBU room where mums could sleep on a bed. The nurses would come and wake us when the baby needed feeding. There were 3 of us in there at one point. But it meant we could do the bf over night - that 2am-4am window is so important for prolactin and milk production, so being able to sit with baby and feed at that time really helped.

Good luck. You sound very thoughtful. I will also add that I had pnd / probably something a bit like ptsd in the end, which being separated from DD1 definitely contributed to. I would say to keep an eye on your wife and encourage her to seek HV or GP help if she feels the same at any point as its very common after NICU stay. Especially once you get home and start to process things.

Congratulations!

I’m currently watching my 35 &5er in his riding lesson. He’s 15 now so this was a long time ago. He was my third and I’d successfully breastfed the other two so I had the confidence that I could do it. I told them that he had to learn to breastfeed and asked them to help me. I was still inpatient and they agreed that I could feed first, top up after. We did manage it in the end. Good luck.

Thanks so much for the advice.

My wife is pumping, and we are feeding baby 90% breast milk. It is brutal - the schedule of pumping, feeding, eating, sleeping, bonding is tiring my wife out, and there's only so much I can do because of the biology of it all. I am concerned about the effect it's having on her, and maybe afterwards there might be some retrospection (she doesn't have time to speak to the therapist).

We are getting help from the lactation consultant at the hospital, although feeding has been established so the problem isn't with the breastfeeding itself. The issue the nurses are worried about isn't weight, but that baby gets tired sucking, and may not get enough calories because she is burning them while feeding. Additionally my wife feels constantly observed and "graded" while feeding, and didn't find the consultant helpful.

There's no rooming in until discharge - we begged. The special care team are great, but the parents can't even nap in the chair next to baby.

Ultimately I think it's a question of patience. We feel very lucky to have our baby girl, we just don't see an end in sight, and the days are turning into weeks, but we just have to bear with the process.

I think you need to work on accepting that you can't fix this and that you can't take the feeding load from your wife. It is a hugely stressful situation and having other people and machines take care of your baby must feel so unnatural. I can see why you want to help take the strain, but perhaps think of other ways you can do that. Making sure your wife has access to decent food, has clean clothes, changing nappies etc are all things that would help and are within your control. Trust your wife to know what she can handle. I hope you are able to take your baby home soon.

DD was 34 weeks, had low sugars at birth and her suck reflex hadn't yet developed. She would latch but not feed. She ended up in scbu with a feeding tube which was from day 2 to day 6. She mastered feeding on day 4 but we had the tube still in Jan case for another day and at that point we moved from scbu to transitional care where I could sleep in with her. It had 4 beds. We were there for another 2 days as she then developed jaundice due to the early feeding problems but got out on day 8. It felt like forever but it did come to an end. She is now 7 and today mastered swimming without armbands, then added diving for stuff and is a very active healthy little lady. If your little one is tiring easily and may still be a bit jaundiced then they will want to keep an eye on her yet. I agree with others, the nighttime feeds are important. If your wife can hold a cloth that smells of her and a teddy and pump loads then it will help her milk come. Plus another few days and baby will be stronger and tire less.

Bear with it. You will get there even if the end isn’t in sight yet. Mine was born 29 weeks, 8 weeks spent in neonatal whilst she gained weight and established feeding. I failed breast feeding for many reasons but they used donor milk for her in the beginning, swapping then to a special formula once she could take it. She was discharged with a feeding tube but it was removed after a few days as she thrived. She’s a very robust tank of a 2 year old now.

Congrats on your baby! You’ll get there.

Mine was 35+5 and we had a similar situation. It felt like it would never end and that we were trapped there forever (I wasn’t discharged though so I suppose that helped).
I pumped and she was tube fed. I never managed to breast feed properly in the end but I don’t mind that too much.

My mum ended up being pretty firm on my behalf and we were discharged.

Is she gaining weight? They will be weighing her regularly. On the unit I recently worked on weigh days were twice a week.

nicu nurse here, speak to the nurses, ask for a plan. It’s common for breastfeeding mothers to have a rooming in room to establish breastfeeding at night, failing that they can admit mum and baby to transitional care.

one thing I will say though. Although your baby girl wasn’t extremely premature, she still was. The sucking/swallowing reflex tires out prem babies quicker than full term babies. There was a poster up on our NICU for parents to see saying that a premature baby will suck over 200 times in five mins (or words to that effect!) I’ve tried to google and find it and I can’t.

as previous poster says, it’s a slow journey but it’s frustrating not to have a plan in place. There may well be one, but no one’s told you

My son was 2 months premmie. We spent 33 days in hospital the last 10 days or so were in transitional care where I was with my son the whole time day and night to establish feeding and for him to gain weight. It seems odd that your wife has not been offered that. The tube feeding seems odd too. If we felt my son needed a top up feed we used expressed milk in a cup.

Oh op I feel for you, I’ve been there. Although you probably won’t like the way mine turned out.

He was breastfeeding like a champ but the nurses kept asking me how much he’s had??? How are you supposed to tell?
anyway it came to the point where they said that he was medically well but would need to stay in for 2+ weeks to establish a clear pattern of breastfeeding and gaining weight. They then added that if he was on bottles and they could see that he’d emptied each bottle and not needed any tube feed for 48 hours he could go home… you can probably guess what I went for?
it wasn’t so bad as I still expressed and fed that in a bottle and was able to do some breastfeeding for bonding when we got home.
not what I’d planned though.
Wishing you all the luck Op it’s a tough time but will be a distant memory before you know it.

It doesn’t seem like an ideal set up. I had twins who were about the same age / weight. I stayed in a ward with them to establish feeding. The aim was for 20-30g per day