DS in neonatal unit BF advice needed please

[mrsissue]

Hello,

I posted on here last week because I was 34 weeks pregnant and wanted to know how to increase my milk when my baby arrived and I got lots of good advice. The thing is my son decided to arrive 6 weeks early and is in the neonatal unit, he was moved to the nursery today and the doctors seemed really keen for my son to start properly breast feeding (he is being fed through a tube at the moment) but the nursery nurse didn?t really seem very interested in helping me. I asked her if I could put him on the breast before his tube feed and she said there wasn?t much point because he won?t be able to do it until he is 36 weeks so it?s going to be at least another week.

Now I know that prem babies have difficulty with BFing to start but my DD was 6 weeks early and she managed to latch on and have a bottle and go home at 35 weeks. I just don?t know what to do, I?m expressing but only getting 20ml max every 3 hours and my son is on much more than that in his tube feeds so I don?t think I?m going to have enough milk for him when the horrible nursery nurses allow me to feed my child, does anyone have any advice on how to increase my milk so I will have enough for him. At the moment they are mixing my milk and formula.

I am getting up in the night to express and every 3 hours, drinking plenty and taking fenugreek capsules. I asked if I could take my son out to hold him before I expressed and was told no because he was settled, so I?m not getting that much skin to skin with him either.

They seem to want me to sit in there all day looking at the back of my sons head and change his bum and clothes, which I like doing but I also have a 13 month old DD who is getting a bit upset because she is missing her mummy and I generally feel like a crap mum to both of them, I?m so emotional I burst into tears on the way home.

Sorry it?s a long ramble, and please if you have any advice on how to increase my milk please let me know.

If your ds is settled then skin to skin is not going to unsettle him.

Domperidone (motillium) can increase supply can be bought (from several chemists to get quantity needed) or your gp might Rx.

Could you speak to your ds's pead as they will want him to get as much as possible and go home asap to.

First of all congrats on the birth of your DS.

My DS was born at 30 weeks. I will tell you his story and hope it helps.

I think the key to this is communication with the nurse in charge. What you need to do is find out when his cares are; this is when they do nappy change/ wash. I would then demand (unless their is a medical reason) that as his mother that you do as least one of these a day. My son at first was on 6 hourly so i did 12 and 6. After his cares at 12 i then with help took him out (as long as heart rate and breathing were settled)and held him naked against my bare skin near my breasts. (i took bra off and wore a loose top he could, with wires, go underneath. If he was having a really good day and off CPAP i would rub my breast around his mouth while he had ebm put down his tube - he licked rather sucked.
Just checked my diary, at 4 weeks + one day we had a go at breastfeeding "managed to have a few sucks." But he took until 8 weeks to be off bottles of EBM and to be fully breastfeed.

Sorry for the ramble but i think what you need more than anything is mother and baby time. Oh and when you express look at picture of baby.

PS my milk supply was all over the place when expressing; not surprising as it is not the natural way

You don't need to ask them permission to give your baby skin to skin. you tell them that you are going to give skin to skin. Tell them that your previous baby latched on from 34 weeks and in this case you have more knowledge than they do.

if they are resistant, contact the supervisor of midwives and make your intentions clear to them once more.

Contact the breastfeeding helplines ot get the name of a local counsellor who can help you with the finer details of help.

good luck and congratulations.

Oh and have a cry ... you are NOT a crap mum. You are doing very well in difficult circumstances. In the second hospital DS was in very few mums' expressed - most said it was too hard or weird. So pat yourself on the back. You have started your milk supply minus the baby.

A routine may help - go in for a care and cuddle then take DD out even if it is the park. Even at her tender age she will understand that much.

I will stop rambling now!

Hello mrsissue congratulations on the birth of your DS! It is such a tricky time when your LO is in the neonatal unit, my DD was also born at 34 weeks exactly and spent time in the SCBU- only a week in the end but it was such a bizarre time.

I kept expressing to maintain my milk flow. Have never heard of not being able to BF till 36 weeks- I took DD home at 35 weeks and she was exclusively breast fed from then on (and in fact only just gave up at 15 mo!). I found that I had to push for what I wanted- in the end I was really quite stroppy with the nursery nurses as I kept getting different answers and I wanted a proper plan about how to get her home. They are experts and have your DS's best interests at heart, but you are still his mum and they should also listen to you and your needs. I asked to speak to a different nurse on the occasion that I got a really unsatisfactory answer.
Good advice above on getting to know the paed or nurse in charge and making a plan with them. I was able to be in hospital as had no baby at home so I could go up for all her cares and I insisted on starting to try BFing from day 3 (as soon as she could come out of the incubator) even though she as actually fed with EBM by tube.
I'm not an expert but I think that if you keep expressing you will keep your flow and then when he is BFing properly you will start making enough for him naturally. Perhaps you could request to see a BFing counsellor? Or maybe see if you have a BFing support group in your local area, they might have some more expert advice.

Good luck to you, hope that you get some good results really soon!

When DS1 was in SCBU and being tube fed, the nurse said that if I nursed at the same as the milk was going in the tube, DS2 would associate breastfeeding with full, nice feeling in his tummy (i.e. he didn't know he was being tube fed). I know this is a little way off, but thought it was worth posting.

Congratulations and good luck

Congratulations! I don't blame you for having a cry - the one thing that amazed me about my DS' SCBU stay was that I didn't just sit down and sob...

My DS was born at 33 weeks and I was able, once he was out of the incubator, to put him to the breast before his feeds were due - if he didn't latch (which he didn't) they then tube fed him. His suck reflex developed at about 36 weeks, but I was encouraged to put him to the breast way before then in any case. You should insist on this. He's your baby after all.

I did spend most of my days watching him lying in his cot though and I would probably be a bit more forthright about wanting to have skin to skin, etc if I have another premmie.

We ended up coming out of hospital with him bottle fed EBM and established bfing at home when he was the equivalent of term plus a week. The bottle feeding didn't appear to affect his latch and we are still bfing at 8mo.

Keep expressing. Try and do at least one session between midnight and 6am as this will stimulate your supply - I think the reason for this is that it is when your milk production hormones are at their greatest. I didn't have quite enough for him, especially at first but was relaxed about letting him be supplemented with formula here and there. Try and hire a double pump if you can - I got a Medela Symphony through the NCT and it was brilliant.

When we established bfing at home it was like my milk came in all over again - I had a massive boost in supply and was spraying everywhere. So don't worry if you don't think you have enough at the moment, as also a bfing baby will take more than a pump can produce.

Make sure you are eating and drinking properly yourself - it won't affect supply, but it will make getting up to express easier if you're well nourished. Plenty of cake.

Thank you all so much, my DH is in work during the day because I think I will need him more when we are at home but he is really cross about how I was treated today, especially because yesterday we had amazing care from a male nurse in the ICU who did everything he could to make me feel like a mum.

My DH is going to phone in the morning and say I wont be in until the afternoon with him and that we want to talk to the doctor and demand a plan.

I did ask as soon as I went in this morning if I could try DS on the breast and she did let me but she seemed to think trying once in a day would be enough to keep me happy because it was when I asked to try again she said not to bother. She didn?t offer any advice when I asked her how to get him to latch on and just left me and said she would be back in 10 mins. It took me a while to get him to latch on but he did and was doing quite well the nurse came back and said I needed to take him off the breast because he really needed his tube feed now. So I actually had to pull him off!

I think when we go in tomorrow my DH is going to take charge because I?m so emotional.

I have been getting up at night to express and I have been doing his cares when I?m at the hospital which is pretty much all day but my 13 month old hasn?t seen me apart from bed time for the last 5 nights and she is getting upset and doesn?t understand whats going on so I see no point in sitting around all day not touching or feeding my son just to change his nappy every 6 hours rather than spending some time with my baby DD who is suffering because she needs her mummy too. I feel very split.

We are going to demand more skin to skin and trying the breast because I'm pretty sure that?s what the doctors want to do, its just the nursery nurses doing their own thing.

No experience of prem babies, but it sounds to me like your instincts are absolutely right. Skin to skin and having him just getting mouth on your nipple will help to stimulate your supply even if he is not feeding much directly from the breast right now.

DS was supplemented for a few weeks after drastic weight loss/very sleepy baby and I expressed for his top ups - even when he wasn't suckling effectively I could feel that him mouthing the breast would make my breasts tingle and trigger letdown.

Plus practicing to breastfeed, as long as he isn't getting too tired, and lots of cuddles from you is just what he needs (and what you need). Sounds like you are coping so well - he is your baby and don't worry about seeming stroppy to the nursery nurses, you can blame it all on hormones later on

My son was born in Feb this year at 33 weeks. The nursery nurses on the SCBU were brilliant and every time before a tube feed I was encouraged to have skin to skin and put him to the breast, and quite often his tube feeds were given simultaneously. When you had him latched on, did they test his tube before they gave him his feed? Was he getting any milk from you?

It must be really difficult with a toddler as well, but just keep expressing as much as you are, insist on skin to skin and putting him to the breast as much as you can, and things will right themselves. If you can only see him for a few hours, then make those hours count - your daughter obviously needs you too. You will produce more milk the more efficient he gets, and remember that the baby will get more than the amount you express. Also I was told boys are slower to get the hang of feeding than girls, so hang on in there, he will get the hang of it soon.

We came home when DS was 37 weeks and I am still EBF now.

Lots of "Hangs" at the end there, sorry, am tired!!

Mrsissue I don't often post but I was in a very similar position to you three and a half years ago...DS1 arrived 10 weeks early and my daughter was just 13 months old. So I can totally appreciate that awful feeling of being torn between baby in NICU and baby at home missing Mummy...horrible, horrible, horrible and you have all my sympathy.

Anyway, FWIW, my experience:

1. It's all a bit to cock on NICU because the nurses use a four hourly routine and therefore the amounts down the tube sometimes seem bizarrely huge whereas if you were EBF at the breast it would be little and often. So don't worry if there's a bit of mixed feeding going on etc, keep expressing, take the supplements if necessary and don't worry

1. Nurses on NICU follow YOUR lead. No WAY should they be hurrying baby off the breast, refusing skin to skin (exception on our NICU was if baby was in an actual incubator where I sometimes had to wait (note it wasn't refused but sometimes I had to hang on while they finished dealing with another baby) because H & S rules meant they had to lift DS1 in and out for me...but once in a hot cot he was mine!) or refusing to help latch.

1. DS1 latched from 33 weeks (I know 34 is average developmentally but the nurses suggested giving it a whirl and he took to it). He didn't take much before falling asleep at first but very quickly got the hang of it. The nurses would let me do the tube feed after I was satisfied he had definitely had enough time at the breast and once he started to do ok at it I also judged how much to top him up via the tube and just had to record the amount for the records. He also took EBM in a bottle from about 36 weeks, no confusion: this was very helpful towards the end of our stay where I was trying to ensure that there were no tube feeds but I couldn't physically be there for every feed (because sometimes I had to be at home with DD, like you, DH had to use leave wisely so he could be there after DS1 was discharged too)

HTH and really best of luck and please don't feel too guilty about your DD, you are doing your very best in trying circumstances

PS The nurses didn't suggest a bottle but my DS was useless with a cup feed and I didn't want the nurses "giving up" and tube feeding him in my absence!

dd2 was born term but with no suck/swallow reflex so was in scbu and ng fed. after a week or so i felt that the staff had effectively given up on my daughter and were tube feeding her because it was easier than 'wasting' time trying to stimulate a suck response - so i met with the consultant who agreed that she should be tried with a suck feed at every feed, not just once a day or whenever the nurses felt they had enough time to bother. once i had his back-up i felt a lot more able to hold my own with the staff.

it is difficult - i had a 16 mo and a 3yo at home - but you will get through it.

in the end i wasn't able to bf dd2, but she was sucking her (expressed) feeds by 5 weeks. i do have sympathy with the staff - they are doing their best in a difficult environment, but imo they do need to step back a little and think longer term - it may take longer to try a suck feed/ arrange skin to skin while tube feeding/ whatever, but it will be more beneficial to the child and the family in the longer term if a little more thought went into the 'care'.

speak with the consultant and get some back-up for your wishes - then be firm about your expectations.

I experienced problems this time last year when DS2 was in SCBU, with some nurses being difficult about me bfing him. The thing that really worked was a visit from the hospital breast feeding counsellor, who wrote down on his charts
no dummy
phone my mummy when I need a feed
lots of skin to skin
etc...

Whatever is on the charts seemed to be like gospel to the nurses, they followed it if it was written down.

Congratulations on the birth of your baby!

Your post rings so true with my memories of trying to get DS to b'feed. He was born at 30 weeks and spent 8 weeks in SCBU, and had a nightmare trying to get him to feed- not helped at all by inconsistent support or no support at all by many of his nurses. The unit will have a b'feeding counsellor- seek them out and ask them to talk with your DS's nurses/write in his notes.

Skin to skin is key- both to help your supply and help him get the idea of b'feeding. Kangaroo care really helps them as well- he is your son so do feel you can challenge any nurse who doesn't want you to "disturb" him. My son had very frequent bradycardias/apnoeas for a long time but they still let me give him kangaroo care so long as his monitors were attached. We literally used to sit for 2 hours at a time with him inside my shirt.

I found I had some weeks where my milk supply really seemed to dwindle but with frequent expressing (increased at one point to every 2 hours, which was hard at night but in the end he fed that frequently anyhow once home!), at least 20 mins a session and using a double electric pump the hospital supplied. Drink loads of water and keep your energy up with frequent snacks e.g. dried fruit, cereal bars, nuts etc.

When DS was equivalent of 36 weeks they changed his feeding tube to a nasal gastric tube so I could put him to the breast without having to remove the tube which had never been pleasant for him. We used to try him to the breast before each tube feed- I'd be at the hospital A LOT which was easy as DS was my first DC, much harder when you have another at home. He sadly didn't get the idea at all and eventually came home on bottles of EBM, but then was readmitted for a hernia op and I met a wonderful nurse who suggested using nipple shields to try to get him to latch. Last resort of course but in our case it worked as he had got used to the feel of bottles and just couldn't figure out the latch however many ways we tried. I'd been expressing for 12 weeks and finding it very hard to keep going so once he could feed directly from me it really was bliss.

In the end DS b'fed for 9 months and after month 4 refused any more bottles (argh) and ended up weaned onto hard spouted cups! We used nipple shields for 2 months before he could manage properly without them.

I think the general opinion on our SCBU was that wee boys are sometimes slower to figure out the whole b'feeding thing- so hopefully it will just click with enough attempts as he gets older / closer to his due date.

Really feel for you- hope you get good hands on support very soon and DS is home with you soon xx

Thank you all for your advice and tales of your experiences. When he was in the ICU the nurses were brilliant and the nurse we had the day before he went into the nursery was amazing, he had me trying giving the breast and had me giving kangaroo care for hours at a time. That?s why I thought when he went into the nursery that we would be trying to progress with this, like much more kangaroo care and much more trying the breast but the nurses attitude was not to bother yet because he is a boy they are slower and because he wont be able to do it until he is 36 weeks. I think its crazy as my son did manage to latch on (they keep the tube in, it?s tiny and up his nose) and they made me pull him off to feed him though a tube. I think I will ask to put him on the breast while he has food through a tube (like someone else said they did).

I?m feeling a bit better about my supply today as the last two expressions have been 30ml and I talked to my aunt who BF and she said that she thought it was a good amount because he is only 6 days and if I was bfing that?s all he would need.

The staff in the ICU were really busy but still managed to make time for ?care? whereas the in the nursery the 3 nurses in there spent the whole day eating chocolates, going for a coffee, having a chat about chocolate and reading a magazine! Then occasionally puting a feed in a tube.

I?m going in soon but I think I?m going to make a list of questions and a list of things I want. I will update you later once we have talked to a doctor or ward sister.

OP, I really feel for you having had a 27 week DD. I really agree with the other posters that the best way to ensure your needs are met is to work with the nurse manager/sister in charge.

My experience was that some staff, and in particular nursery nurses who were nowhere near as well trained as neonatal nurses in the needs of prem babies, could be quite ill-informed. I noticed quite a few of them did not see kangaroo care as important and clearly didn't know that the benefits (eg better temperature regulation, more stable breathing patterns, oh and LOVE) are evidence based. Regular kangaroo care with DD from birth kept me sane and kept hope alive that I could be a mum to her.

Re expressing, I agree a cuddle before expressing is great, I also had my own hand pump which I would use next to the incubator. It is also perfectly possible to give a tube feed while your DS is snuggling/latching - get another person to use a piece of surgical tape to fix the syringe to the incubator (our unit had anglepoise lamps near every cot which were ideal for the purpose)

It's also worht checking out www.blissmessageboard.org.uk for support from other parents. There are also quite a lot of leaflets on the main site which are UK best practice and useful to refer to if you are agreeing a care plan.

Also, do remember that you are not limited to going in during the day - I know you may prefer to rest with a 13 month old but night time visits can be nice

Thought I would update you all on how today went.

When we went to the nursery it was a different nurse looking after my DS today she said that we she would ask if we could see the doctor but that they were all very busy and asked what we wanted to know. We told her how we had been treated yesterday and how upset I had been. She said that it wasn?t right that I had been upset and she talked to the senior nursery nurse who came and apologised to us.

We came up with a plan with the two nursery nurses that I would come in at 11:30 do cares and put him to the breast then they would top him up through the tube, then 2:30 while he is being tube fed I will do kangaroo care, then 5:30 do cares and bf him and tube top up again. They wrote this down and taped it to his cot, so I am feeling much better today that there is a plan that will be fine for a couple of days at least.

The nurse was really helpful today and actually helped me get my DS to latch on and he did have a good go at feeding, so I am really pleased.

I think its really bad how many of us have felt this way though and I think you advice gave me a bit more strength to say what I wanted to happen, so thank you.

Congratulations on your baby boy I'm so pleased today has gone better for you. My ds1 was 6 weeks premature, he came out of SCBU 4.5weeks later. He didn't really 'get it' as in breastfeeding until he was 38weeks gestation...I was told that boy's are much slower! I expressed every 2 hours in the day and 3 hours overnight. The nurses told me after a few weeks to reduce it down to 3 hourly, then 4 hourly?? The 2nd day of expressing 3 hourly my milk supply nearly vanished I was devastated. Someone who actually knew about bf explained why, so I quickly went back to 2 hourly and my milk came back after a couple of days. I know it's probably almost impossible for you to increase your expressing having a 13 month old too! You're doing such a fantastic job, I don't know how I would have coped if ds2 had been premature! We also did kangaroo time every day for at least an hour , which REALLY helps, and I put him to the breast before tube feeds from 3 days old. That other nurse doesn't sound as thouugh she knows what she's doing Hope you get to take him home soon, and don't forget to take care of yourself too

I just wanted to say that it made me feel really emotional reading your posts mrsissue that you are trying soooo hard to get bf established with your little one without any support it seems and I wanted to wish you all the best and lots of luck!

Just checked back in to see how you were getting on mrsissue, so pleased that you have had some positive results. Sounds like your little boy is taking well to BFing! Good for you that you stuck up for what you wanted, got an apology and a plan for how to move forward. Well done!

I hope that you don't have too much longer to go with him in the SCBU.

OP - really pleased that it has gone well for you today and that your DS has had a good crack at the feeding already.

I would just recommend one thing - in my case, the times his feeds were done could vary from day to day depending on what times they were done overnight. I phoned every morning to find out what time to go in for the first one. I'd hate for you to turn up at 11.30 and find they'd tube fed him at 11. This happened to me a couple of times.

Just wanted to say congratulations.

Sadly this is very similar to my situation - all those posters about kangaroo care and I was only allowed to hold her once a day, for a few minutes. However, my 32 week prem DD was out of hospital by 35 weeks exclusively breastfeeding, having started at 33 weeks, so their "36 weeks" is nonsense. You sometimes have to be quite firm with them, but it sounds now as if you're getting the support you need, and your little one will be out in no time. Good luck xxx

ps. it really annoys me how many prem babies leave hospital bottle feeding because the support for breastfeeding isn't there. Well done for sticking to your guns, you are doing an excellent job.