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No one knows what's up and I'm getting stressed!

(26 Posts)
confuddledDOTcom Sat 18-Jun-11 17:49:29

My youngest is 17 days old/ 36+5 weeks corrected age. She's my third nurseling, I've been feeding none-stop for five years next month.

She went to NNU initially because there wasn't room on Transitional Care (the rooming in ward, basically) as she was born late at night I was taken to a postnatal ward and she was given a tube for her feeds and they gave her formula. It was supposed to be temporary until I could feed her and TC had room for us. She couldn't tolerate the formula. I gave them 30ml of colostrum next morning (how chuffed was I at my supply!) which they decided to split and give with formula over a few feeds but even that was thrown back up. She went to nil by mouth to give her tummy a break and put on a drip. She also ended up under the lights and didn't pass her first mec until she was 3 or 4 days old.

I expressed and quickly filled their fridge, I could get 200ml a time and she was started on 1ml an hour which was increased by 1ml every 8hrs. At 8 days old she was back on my milk and started to take it from me. We went to TC the following day and she came off the tube feeds. In those 9 days she had two periods under the lights, two different courses of antibiotics whilst they sent off blood to see why she was so sick and she carried on not opening her bowels very often.

Since we've been on TC she's continued to lose weight (obviously being nil by mouth she lost weight) which they expected going from regulated feeds to all breast but she's gone from her birth weight of 2.31 to 2.08 (5lb 1oz to 4lb 8oz I think) her bilirubin levels are all over the place, she comes off the bilibed then needs to go back on two days later (she's gone from 243 to 312 in two days this time, the phototherapy line is 250 and exchange transfusion line is 350) and she's not had a poo in 4 days.

Paediatrician came to have a chat with me today and asked me how I feel the breastfeeding is going and to be honest I'm confused! Her technique seems ok to me, the breastfeeding advisor and the nurses/ midwives, I have a rather abundant supply but after a feed can express very little. The lumps shift after a feed and I go from hard to soft, she's also getting milk drunk and sleeping well afterwards. To me and he agrees it appears she is getting fed but it doesn't match up with how she's doing. He's happy to leave her until Monday - before discussing her feeds he was talking about how to top her up - and see what her next weigh-in is and just try waking her more often although he said that may not help if she's not hungry.

I don't know what to do! I thought this would be my easy baby! If they top up it has to be my milk as she's intolerant to formula so it's going to be a never ending cycle of feeding and pumping sad Anyone have any suggestions? Or just sympathise with me. I don't mind which.

They - him and nurses - want to blame tandeming! angry I pointed out I'm not actively feeding the others - I'm in hospital they're not for a start - they haven't fed for over a month because I've been in so long and it's not like feeding a baby they do it when they feel like it.

Meita Sat 18-Jun-11 19:46:40

Poor you, that sounds like a difficult start!

I can't really help, just to say that our start was a bit difficult too (DS had GBS, was on IV antibiotics for 10 days, had no poos for days then suddenly started to poo 14x/day, was intermittently tube-fed, yo-yoed weight-wise (lost more than 11%, back to nearly birth weight, lost 8% again, took 5 weeks to get back to birth weight), at 20 days we started having to bottle-top-up after every feed (EBM)). Why I'm saying this is because though it is very tough initially, it needn't be a never-ending cycle of feeding and pumping. We eventually weaned DS off the top-ups and got back to EBF (still going strong, DS is 10 months now). It feels like never-ending, but it needn't be!

The other thing is, with DS they never knew what was wrong, I mean they found out about the GBS eventually, but they never suggested that the GBS might have been a cause of the weight yo-yo-ing/feeding difficulties. Somehow there was just something not quite ok, we had to get over it, and then it was good... hmm. The one thing I kind of suspect is some sort of reaction to the ABs. But we'll never know.

Don't let them blame the tandem feeding.

Although you sound like a seasoned bf-er, perhaps you should ask to see the hospital's lactation consultant. All the paediatricians, regular midwives, and nursery nurses probably know less about bf than you do. But something is not working, so a chat with the LC might help. And if it doesn't, at least it will give you some ammo against the claim about tandeming. I wish someone had suggested to me to see the LC while in hospital - she was just a few doors away after all. But nobody did and I only started getting things sorted when I went to see her later on, after having been discharged. Could have saved myself much trouble if I had seen her earlier! But MWs and NN tend to think they know it all and not see the point of suggesting the LC.

Good luck! Don't despair. This baby may yet turn out to be your easy one!

confuddledDOTcom Sat 18-Jun-11 20:13:48

We have seen her and she's happy with her technique. She's suggested either expressing a little first so she's getting less foremilk or using #2 when she's here! Although after being given an expressing pot of EBM she offered me a cup when I asked if she wanted any hmmgrin

This ward is primarily a breastfeeding ward - there's a few formula feeding mothers here but mostly mothers establishing breastfeeding - so they tend to be pretty good here.

confuddledDOTcom Sat 18-Jun-11 20:23:05

I better explain my easy comment.

My first was born after a quick natural labour which ended in a crash section at 31 weeks so she had no steroids. She did really well though, 17 days in the unit and a week on TC.

My second was born in similar circumstances, but I'd been threatening from 24 weeks so had had all my steroids, at 35 weeks but was IUGR she had 2 days in the unit whilst we waited for a TC bed and we were in 5 days so a week in total.

This one was healthy although I had an IUGR marker she didn't get it, she had her steroids at 27 weeks as I was threatening again and a VBAC so lots of reasons for things to be better than the others.

Meita Sat 18-Jun-11 22:37:59

Wow sounds like you have short pregnancies!

It sounds to me as if waiting until Monday is probably the right thing to do, as Paed suggested, no? Try to relax a bit, perhaps by Monday she will be gaining weight, everything will be on track, and you will have been worrying about 'nothing'. (I know, it's easier said than done)

And if she does need EBM top-ups, yes it will be hard for a while, but it won't be forever! I was very upset, myself, when I was told I had to top-up; I thought I had somehow failed or something. But there seem to just be some babies who for unknown reasons need some extra after BF. For a little while. Are you 'just' upset because of the added stress of having to express all the time, or do you also feel generally upset at bf somehow not working out right?

Overall it does sound like BF is going well. You're confused because her weight and bilirubin isn't confirming things. Perhaps there is an underlying problem (and ergo, perhaps you will have to top-up for a while) but it doesn't sound to me as if there was a bf problem and therefore even if you do end up top-upping for a while it will probably not be for long. (btw did the blood tests ever show anything? are they still looking for something?)

Regarding the bilirubin, I'm no expert at all, but I do recall my 'clever book' saying that it's only really a serious danger in the first 48 hours of life. Don't know if that counts for preemies too, but thought it might be a bit reassuring. Just musing; as they say you should feed lots when the bilirubin is elevated, I guess that means not feeding 'enough' will make the values worse. Now as your daughter has been continuing to lose weight, perhaps in some way it means she hasn't been feeding enough, which would explain the bilirubin as well? (Not feeding enough perhaps for random reasons such as AB side effect or just being very tired for a time or something, not latch or supply related obviously as you seem to have that down well.)

I hope very much for you that things will stabilise and your daughter will be steadily gaining weight soon! Might well be that her weight loss and the bilirubin values will just remain an unexplained oddity...

Sorry for rambling along, I need to sleep, finding it hard to keep thoughts together, but didn't want your post to go unanswered. Hopefully somebody else will be around soon with helpful advice!

japhrimel Sun 19-Jun-11 19:18:39

Top-ups don't have to last long. DD started out mostly on top-ups when we got her home from hospital after a SCBU/NGT start, but was EBF by about 1 month old. And that included all the faffing of me learning how to bf as she is my first child.

I would try to put a plan together with the paed. Something like you'll express for top-ups for 5 days while her weight is being monitored, but if that doesn't make a big difference, he'll get more tests done and get further "second" opinions to see if there could actually be a problem with LO. It sounds like feeding is going great from what you've said, so I'd be concerned there was an underlying health problem.

Meita Mon 20-Jun-11 11:06:56

japhrimel that's pretty much exactly what I was trying to convey. Thanks for putting it so much clearer (and more succintly!)
The only thing I'd add is that though there might be some underlying issue, it needn't necessarily be very serious, nor perhaps need diagnosis and treatment. It could be something that just passes by itself. And yet again, it could be serious, so it's good that she is being monitored.

Confuddled, how are things today? What did the weighing reveal? Hoping for the best.

confuddledDOTcom Mon 20-Jun-11 22:49:18

Sorry for not coming back sooner.

She's gained a little weight today and her bili levels are at their lowest, however she's getting a lot of EBM and not really breastfeeding because she's never awake enough. Because of her weight gain - or lack of - they've put her on 180ml/kilo instead of the usual 150ml so she's too tanked now to wake up. Yesterday and in the night it was a small cup feed but today the midwives decided they don't have time for that (yesterday and last night I had a nurse sat with me helping me to feed her and doing the top up) so she's being given a bottle because I can do that myself. Life at the moment seems to be a constant round of PTB for half an hour - usually a big fight, she wants it and seems to think I'm withholding it - then bottle feeding last session's milk then PTB again (this is when she actually takes it if she's awake) then pumping. It takes about two hours and she feeds every three.

I'm now only expressing about 40ml a time including both sides so my supply has dropped and I don't feel like I refill, I'm always surprised anything comes out. I can't stop crying today. I'm so fed up with the whole thing. I feel like I've let another baby down and then I'm angry because if we'd been kept together this wouldn't have happened because she'd have built my supply up herself from the start and we'd be home by now.

japhrimel Mon 20-Jun-11 23:09:14

What I had to do when my supply started plummetting in a similar situation was actually stop bfing for a day and a half and concentrate on expressing, sleeping and eating/drinking. Unfortunately, things that shouldn't affect supply when bfing can affect expressing IME so you have to really look after yourself. If a BFC hadn't suggested the above to me, I think I would've driven myself into the ground and have had to switch to FF full-time. As it was, that was the beginning of what has become a lovely bfing experience for us.

Another thing we had to do that an infant feeding specialist suggested was give DD a little EBM (10-20ml usually) before trying latching her on. Otherwise she was too tired/sleepy/hungry for it to have a hope. She then had the rest of the top-up afterwards as needed.

tiktok Mon 20-Jun-11 23:29:01

sad difficult start....and that, combined with the slightly early birth and therefore smallness, may be at the root of the whole thing, confuddled. I would need convincing that the NNU decision to give formula was correct, personally (why give formula? You were a willing and experienced breastfeeding mother - you could have been supported to hand express colostrum from the very first moments? Your baby could not tolerate the formula, and ended up on a drip....more intervention).

Skin to skin, kangaroo-mother-care, can help enormously and reduce stress for mother and baby....can you do this?

confuddledDOTcom Tue 21-Jun-11 16:26:07

japhrimel I ended up doing that yesterday. It wasn't deliberate but she ended up so tanked up that she wouldn't wake for feeds. Over night she started to demand feeds again and took less milk from the bottle. Since this morning she's been taking all feeds direct from the tap and flaking out afterwards, she even slept through a blood test straight after a feed and they had to prick her heel several times as she wasn't being too generous with her blood. So I think she'd taken plenty then.

TikTok, I think if it had been earlier in the day they'd have kept us together and got us breastfeeding. A midwife gave me a pile of 1ml syringes and the Bliss booklet when I got to the ward but I was too exhausted and shaken (had a team in delivery that didn't want to support me having a VBAC and when it was too late to section they were quite horrible to me, including using stirrups knowing I have back and pelvis problems and my midwife and Doula shouting no) to try hand expressing when I'm not good at it anyway and on my own. Next day the breastfeeding lady asked me if I'd tried, I said I hadn't and explained I was tandeming so knew there was milk there so she got a pump out and I did 30ml. I'm convinced we'd have been home by now if we'd have been kept together sad

We're in a ward together now so when she's not on the bilibed I'm trying to keep her on my chest a lot, it's hard because if I even close my eyes they're taking her off me, I've rowed with them because they've said I'm asleep when one time I didn't have my eyes closed and others I've been trying to cope with pain and was actually muttering about it. I'm getting exhausted trying not to fall asleep during feeds, especially night feeds.

confuddledDOTcom Tue 21-Jun-11 16:32:43

Had to post before I was finished as I couldn't scroll properly.

Her bili levels were still low today although a little higher than yesterday but they said that's normal as she's come off the bed. She will be weighed tomorrow and if she's gained and again Friday we can go home at the weekend.

I'm sure I was going to say something else but I've gone blank smile

Meita Tue 21-Jun-11 23:30:06

Oh dear you, that is soooo hard. I'm really upset for you at how you were not respected during the birth process. And the two-hour process of feeding, every three hours, is just absolutely knackering. On top of that, having a baby who just sleeps (because of being so full) and is so not interested in you and BF despite all your efforts, can be demoralising. (Been there.)

With that much milk poured into her, she is bound to be gaining weight. That's the good news I suppose. And that will mean that you will be going home soon smile

Meanwhile, take care of yourself. Focus on re-establishing your supply, if possible. If you need to rest/sleep, then do so - if you're exhausted, it won't be good for either of you. Even if it means cutting corners somewhere else (anything not directly feeding related; can you get (more) help with stuff like nappy changes, sterilising the equipment, and such? Perhaps even not PTB for so long, every time? I believe it is the frequency, rather than the duration, of feeding that will increase supply).

I want to come and stand guard by your bed so that no-one disturbs the no doubt too short and too rare moments you have to cuddle with your daughter. sad. And take care of all the silly stuff like sterilising while I'm at it.

confuddledDOTcom Tue 21-Jun-11 23:55:59

The nurses have been good with taking stuff to or getting it from the milk kitchen - hard to carry with crutches - and as they say sterilised things for EBM can stay out 6 hrs I do my expressing set alternate feeds, everything else is single use so not too much to do. It's all Milton too and all changed at midnight by the staff. I did cut back on PTB because it was pointless when I was just being fought off sad

The cycle has calmed down today though. She's been waking up, demanding feeds and not fighting me off! Had one top up when she was a little restless, Mum was here so she did it. She was a little shocked and thought I was mean to give her 10ml! Took ages to drink it all though and it's just under an hours worth of milk so it wasn't that stingy. I'm thinking of doing some top ups tonight and in the morning. Although they won't weigh her after a feed it'll help bulk her up a bit. I think I'll cope better with it if we are at home.

confuddledDOTcom Wed 22-Jun-11 00:06:08

Posting mobile I always miss things blush thank you Meita, TikTok and japhrimel. I'm not sure if anything has been achieved yet but it's good reading the responses here. Hopefully this will be a turning point, I've noticed a change in my supply today too, and we'll be home at the weekend and I won't need anymore advice! It's good to know it's here though anyway.

Funny story about my supply. Every day at 5.15 no matter when her last feed was she wakes for food. The staff tease me about it as that's when the supper trolley passes so it's like she's being a pest. Today she didn't for the first time ever but I let down just as the supper trolley passed!

Meita Wed 22-Jun-11 11:20:00

That's good news, confuddled. You sound a lot more upbeat. I'm sure getting home and away from all the stresses of hospital will be good for you.

I hope she continues gaining weight and that the bilirubin keeps dropping, so that soon you will be able to say 'well we had to stay in hospital a bit longer than anticipated because there were some problems with weight gain and jaundice, but it all sorted itself out eventually and now all is fine' smile

And you being the experienced BFer that you are, you won't be going and making the silly mistakes I did when they finally let us home, either wink

confuddledDOTcom Wed 22-Jun-11 17:09:42

She's up another oz today so half an oz a day over 4 days, not bad considering that I've always been told they gain 1-2oz a week. I did cheat slightly by not telling them she'd had a feed between feeds grin Lots more blood sent off today, more bilirubin and repeating the one they did yesterday to see if she's starving - which yesterday's said she's not. She's now getting an aversion to her feet being touched after having so much blood taken. Her security tag fell off today and it took me an hour to stop her crying after the nurse tried to put it back on sad

They're still blaming tandeming saying that I'm making mature milk not new baby milk so not enough calories for her! I've hardly nursed my others in 6 months because of being pregnant. There is a lady who works in this hospital who is an NCT BFC and a midwife or health visitor. She runs a drop in group that I use when I have little babies and I know she knows her stuff so I'm thinking about ringing her and seeing if she'll pop into the ward.

One of the community neonatal midwives is working on the ward today who I know from before, I wanted to hug her earlier! She looked at her jaundice chart and said "oh that's just breastfeeding jaundice" then saw from her in/ out chart she's not done a pooh since the 13th, looked at her tummy and said "she's just efficie
nt at using her milk"!

Trying to remain positive. I've seen a difference in my milk the last couple of days so trying to tell myself it's a good sign. It's hard because everything hangs on the next test results or weight so you're never sure it's going to be good next time.

I ended up stropping off the ward last night blush they keep telling me off for even closing my eyes during a feed but because of my mobility problems I can't sit in a chair for a full feed so last night I tried to feed pacing my bay. Unfortunately she decided to wake regularly and I was ending up getting in more and more pain so one time she started to cry I walked out. I sat in the chairs near the entrance for awhile and they called the posters to tell me she was settled. I didn't move because I was feeling so angry about it. Not long after a nurse came and got me she took me back and they kept her the rest of the night. I was waiting for their favourite question "what would you do at home?" because I was ready to flip! I'd BEDSHARE!!! They asked me that when she didn't want to be on the bilibed and wanted cuddles. I looked blankly at them and said "she wouldn't be on the bilibed at home so I'd cuddle her when she wanted a cuddle" I'm not at home! I can't palm her off on Daddy whilst I get my sleep or just a break. I can't curl up in bed with her when we're both tired or take a bath with her or any of the other things I'd do if I was home!

confuddledDOTcom Wed 22-Jun-11 17:14:15

Lol called the porters! Sounds like they rang MumsNet to get me grin

4madboys Wed 22-Jun-11 17:25:04

is she not going under the lights anymore? and she is with you on a ward yes? why will they not let her sleep in bed with you?

at my hospital they simply put the sides up on the bed, make sure you have plenty of pillows etc so you can get comfy and let you bedshare with your newborn, i understand your dd is a premmie and smaller than usual, but even so in my hospital as soon as mothers and babiesare together they encourage you to lie down and feed so you can rest/doze, will they not let you do that?!!

confuddledDOTcom Wed 22-Jun-11 19:57:04

She's been on and off the bilibed since we've been up here (12 days now) they're doing the prolonged jaundice screen tomorrow.

These beds don't have sides and they don't allow you to bedshare. I keep being told about the babies who end up back on the unit with a fractured skull after falling out when mum fell asleep. Personally I think it shows lack of understanding, when I close my eyes all that I'm aware of is me and her, I'm resting and she's happy feeding or sleeping.

Ooh actually I've just noticed the electric bed I'm in does have sides but considering they tell mums at discharge how baby needs it's own bed I can't see it making much difference.

Meita Wed 22-Jun-11 20:11:11

I think hospital policies vary. At mine they wouldn't let us bedshare either. Got a big telling off barely 12 hours after DS was born as he was in bed with me. Actually, some kind MW had passed him to me when he was crying, as I was completely unable to pick him up myself (fresh from EMCS). Equally unable to put him back into his cot obviously. So he stayed. And I got told off.

It's sad that little ones who are having a hard time get the additional stress of being pricked all the time. I suppose sometimes it is good that they keep a close eye on things, but sometimes they should be a bit more trusting of the mothers' instincts and some MW's years of experience rather than relying solely on a battery of tests.

I hope the next pricks will at least show the desired results.

LunaticFringe Wed 22-Jun-11 20:34:29

Message withdrawn at poster's request.

confuddledDOTcom Thu 23-Jun-11 11:13:08

Just been talking with the breastfeeding lady and feeling a little better. She's going to get a prescription of dom for me as it's hitting my supply. The drs trust her to tell them to prescribe it so I don't have to see someone.

The blood test yesterday showed she's a little dehydrated so we're topping up again. We agreed 20ml after a half hour feed then she could go back to the breast. Last night the night staff decided she couldn't go back on so gave her another 20ml but she wasn't feeding from me she was sleeping with my nipple in her mouth and wouldn't take a bottle so she was force fed which left her babygrow soaked. I was really upset and refused to feed her next time because I knew she'd be too tanked to feed and couldn't face half an hour of fighting so feed her just for them to give a full feed. So she had three bottle feeds in the night. I don't think they tried to wake me after that. She went on this morning after another heel prick woke her up. I haven't topped her up this time because she fed so soon from her last feed.

We've had another pooh today! Still mec though at 3+1 weeks old - darn I missed out! She was in the nursery getting her blood done!

Meita Sat 25-Jun-11 17:48:18

confuddled, hoping you're home and settling in and relaxing and most importantly, cuddling your baby as much as you can!

TheRealMBJ Sat 25-Jun-11 18:44:56

Oh confuddled sad just caught up with this. I am so sorry you are having a hard time. You seem ton have been through so much already. Glad that you have and experienced BFC available and on your side. What a stroke off luck. At least you have someone they trust in your corner

I must say, that I agree with tiktok in that I would really want them to justify their decision for using formula (particularly continuing to use formula) when you were able to express so much colostrum yourself and not using milk bank milk when your DD clearly couldn't tolerate the formula confused

Their logic regarding your milk also doesn't stack up, Stage 1 formula (which is all the NHS recommends for the first year) doesn't change at all in composition so I don't really understand that bit of logic, secondly they obviously don't understand the nature of milk production and that your body goes back to producing milk for the youngest nurseling (and in any case, as you said you haven't fed the others while in hospital anyway).

I really hope things get easier soon.

Sending many un-MN hugs.

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