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I had my first baby (a ds) last Wednesday . We've both been in hospital untl now (standard in Germany). Today they said his levels of bilirubin had risen again and he wasn't getting rid of his jaundice, so they're keeping him in for phototherapy. The doctors have assured me it isn't serious and he should be fine within a few days, but of course I'm worried and upset because I know jaundice in babies can lead to brain damage. Have any MNers any experiences with this? Thanky for any advice/information!
My dd had jaundice, luckily we hadn't been discharged by the time it was found. They put her on the light box (aka billy box) for a couple of days and it cleared up. Once home I was told to put her in the moses basket by the window to make sure she got enough sunlight
Hi - my ds had it and is 100% fine (if a bit bolshy today). Its not a fun experience as they have to be naked and you can imagine the mess but it is fine. Good luck
us with ds1
had t have triple phototherapy and was in scbu for 2 weeks
his levels were high enough to need a blood exchange but they wair=ted another 6 hours and they came down a bit
took weeks to get down to normal levels
had hearing test at 4 weeks as it can affect this
he is now a haooy, bright, intelligent almost three year old
please CAT me - wiukd be happy to talk offline (when ds2 isnt attached ti me)
please ask if you want any further info
i can also explain a bit more about the brain damage/hearing thing - we were very scared about this
it is rare though and would normally be treated before it got this far
as i said thiugh,,,ds1 had severe and prolonged jaundice abd is totally wonderfully fine
i know EXACTLY what you are going through though
btw many many babies have to have a small dose pf phototherapy to kickstart their little livers.....
My ds also had phototherapy treatment for jaundice.
We knew before he was born that he would be jaundiced though because i had antibodies which were attacking his red blood cells. He was treated on a billy bed for 7 days but remained jaundiced for about 3 weeks after leaving hospital and he had to go and have blood tests every week for 2 mths (only 2 mths because he became anemiac too).
Like popsycal said brain damage is very rare as the jaundice is picked up early and treated early and my Ds is now a happy, healthy 2.4 yr old.
My DS had it too. Hated the experience, was an emotional wreck though as my milk had come in, couldn't cuddle my darling baby properly! Your DS will be fine though I'm sure. Couldn't you stay in with him? I did with DS, was BF though.
I agree it can be heart breaking. Ds was on his billy bed from about 2 hours after his birth and only allowed off for feeding, no cuddles etc, for 7 whole days.
Think i held him for several hours when they first let him off it.
Also i was convinced he would have to go back in and each time he had his bloods done i cried when the phone rang with his results.
Thank you everyone - that reassures me a lot . I also think they're being quite careful with him - he was 2 weeks early and only weighed 6 lb a few ounces (not sure exactly how many, they do it in metric here - 2820g) so I think they're not waiting around for his bilirubin to get all that high in the first place. Fortunately we've had 4 days for feeding, cuddles etc. and I'm staying in with him (they've given me a private room) and being called for feeds. (Have just popped out for a couple of hours now while he's on the bed). Thanks so much again - please keep the replies coming in .
Ds1 was two weeks ealry too - but a comparatively hefty 7lbs 10oz
great to get a private room
keep us informed
what is the little man's name?
Short update - Samuel's bilirubin levels have fallen , so they're not putting him on the bed again just now, but keeping him in for observation. He's very tired, so I'm having to take lots of trouble and patience to get him up to approximately the recommended level of feeding (mixture of bf, EBM and formula) - as if I minded .
My dd was 9lb8oz born and she had jaundice she was given a double dose of the billy light and the billy blanket - does he have a shield over his eyes? my dd was so strong she kept pulling it off her! to the point that dh had to stay with us awake all night to keep it on her! Im sure everything will be fine she remained a little yellowy for about 14 days though!
On the feeding side - my dd lost quite a lot of weight and was onyl just within the 10% on leaving hospital - her weight fell to 8lb8oz ! I was told to bf her every 2 hours to help her body over come it! and it did help her - shes 6 months now and very alert!
My dd's bili rubin was high enough to keep under lights for 3 days. By day 3 she was 8 days old and though the level was still high, she was allowed home as by day 8, their livers have matured enough to cope with higher levels of bilirubin. I was told to make sure she was alert, feeding well and had lots of dirty nappies (both types). I also had to take her back for tests to confirm that the levels were constantly dropping.
As I also understand, when they are taken from under the lights, there will be a spike in the levels before it drops again. Normal so expect it if they test and it happens. It does not necessarily mean that she will go back under the lights, its the alertness, feeding and nappies that count.
I am so glad that things are looking better. Feed him any time he is awake and if he goes without a feed for 2 hours, wake him and feed him. Thats my advice anyway! It is vey scary isnt it. I found it so isolating as jaundice to many people isnt really a 'big deal' and when I said he was in special care people they looked at me as though I was crazy and said just to get hm in he sun in his pram.
Please keep me updated. Thinking of you all
thinking of you too. when dd3 was born she spent 24hrs in scbu due to low blood sugers. they also checked her bilirubin levels, and the 1st result came back very high. the redid the test taking more blood than last time, and it came back fine. her jaundice didnt clear up completely till she was about 3 weeks old. plenty of feeding was recommended and sunlight for us. if things had been worse she would've had to stay under the lights.
my DD was prem and got jaundiced day two.
She had a biliblanket. It was a kind of big pad thing which went inside her babygro at the back resting against her bare back, and attached to the lightbox with a big tube, like on the hoover. I was so heartbroken because the contraption was bigger than she was BUT she wasn't taken away from me even though I had to lug this huge box thing around on a trolley with her attached to it. Her blood bilirubn efels were way high too, but it did work and I am so glad she didn't end up in the incubator with the pads over her eyes. Has anyone else's babe had their treatment like this?
My little one - who is only 5 wks now - had a biliblanket underneath and lights overhead while naked. That was all I needed after pre-eclampsia and being kept in for high blood pressure. She was under lights for 3 days. Her screams were heartrending and went on for hours sometimes. whenever she went into one of these bouts I wept openly and loudly for her. sometimes I would take her out from under just to comfort her, making b/feeding the excuse to take her out. We tried a dummy too but that only worked a little while and after a day and a half she learnt to pull the little mask off her face. I couldn't sleep properly for getting up to check that it was still on.
Luckily, a nurse from the neonatal ward knew me and spoke to the registrar to allow us home on after the third day of treatment. Her levels were still high enough to keep her in but since she was 8 days old by then, she was allowed home as her liver would be strong enough to clear it out on her own. Everyday a midwife came to the house and pricked her heel for a blood sample to send to the hospital. We were threatened once more to be taken back in but thankfully that didn't happen.
I think the lasting effect of this is the same screaming bout just about everytime her nappy gets changed.
Sorry so long but this became self therapy.
just to add another story
On the third day in the 1890s post natal ward of the Whittington after yet another emergency C, I was packed and ready to go when the doctor told me ds2 had high BR and would have to stay in for phototherapy.
I lost the plot, screamed for a private room and when I put him in that antithesis of a womb, the plastic box with the orange eye sheild and he screamed like he was on hot coals I told the doc I was going to do it my way.
So I took the lamp stand over to the bed, adjusted the lamp so it was low, lay with ds2 on the edge of the bed and BF him straight for 24 hours with that light on and locia leaking from me and pain from the wound and him all naked and yellow but there was no way I was going to leave him to howl in that plastic crate.
God just writing this even after 20 months makes me sound like a crazed she-wolf but that's just what you are in the days following birth. Anyway he was absolutely fine after 24 hours of that and another 12 waiting for the most cack-handed nurse in Chrisendom to do that horrid blood sample from his little heel.
I'm just very grateful that was the only and relatively very minor thing wrong, I don't know how I would cope with more serious medical intervention on a newborn and hats off to those of you that do.
well done suzy!! if it had been a summers day with dd3, iwould've done the same. as it was, it was snowing the week i was in.
well precisely, although I know from talking to Popsy that jaundice can be serious, I think that there is a lot to be said for old fashioned methods and that hospitals are reluctant to trust mothers to follow them, I can see their dilema but you'd think someone could have designed a phototherapy unit that wasn't like a bloody plastic coffin ffs
just to expand on my story gaving read everyone elses/...at first, ds1 was so seriuos he had to be in scbu as he needed 3 phototherapy whatsits as his levels were at 'exchange level' and they needed to act quick ir he would need a blood transfusion...the little pad to lie on, on beaming down on him and another beaming down from another angle. he was also on a drip to get fluids in....
after 12 hours when the biliribin came down a bit, he was put on a bilibed still in scbu. as soon as the levels came down a bit more, we went back to a private room on the ward with the pad thingy,..then it went up again so we were allowed to stay on the ward but needed a second light on him.
this went on for 2 weeks. i had already been in a week before he was born with pre eclampsia
anyway, after 2 weeks they gave him phenobarbitone (an epilepsy drug which apparently ca kickstart the liver). they were about to call the north east liver specialist person, then his levels started to go down. i begged them to let us go home as my bp was still high and come bak the next morning....we did, and the levels were still coming down. we had to go back in twice a day for a week
at 4 weeks he had a hearing test and saw a consultant and althugh still yellow, he was fine apart from his little heels being very sore
my long winded point is
that jaundice can be seriuos but like with berolinas little one, if t is treated early and monitored closely, then success is usually good
now i feel all emotional
hugs to berolina and family
Thank you all so much for your stories and experiences. His levels did go up a bit this morning (not in the danger zone though) but have fallen again this afternoon - he only had two bouts of the map and is now just being observed. Popsycal, feeding is one of the problems. He often refuses the breast and when he does latch on it takes him ages to get out relatively tiny amounts. We and the nurses (who are very knowledgeable and brilliant) reckon it's because he's just too tired from the jaundice (he sleeps a lot) and can't or (when he's a bit more awake) won't make the effort. This did distress me, because I really want to keep at bf, but I've found a plan which is working well so far: before bf I express a tiny bit so there's milk flowing when he latches on, then I let him feed for 30 mins maximum so he doesn't exhaust himself, then I give him expressed milk or formula. He wouldn't manage 2-hourly feeds, but we're making sure he's getting the amount he needs to get to help with his weight (he unfortunately lost 50g yesterday, but before that he'd gained). (he was only 6.2lb at birth so that's something we needto keep a careful eye on). This is the first full day he's been feeding well at every feeding. His nappies have been fantastically full for the last 2 days . We'll probably be in for a few days to come, but he seems to be doing well.
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