Any experience of newborn jaundice levels rising again after phototherapy?

[Notmeagain24]

Hi! I guess I'm looking for a handhold and any words of wisdom anyone might have.

My youngest son is 11 days old today. He has been in and out of hospital since we left for phototherapy to tackle jaundice. His first round of therapy brought his bilirubin levels down to 220 (his threshold for treatment is 270) but they very quickly crept back up to 268 over the course of 30 hours (220 when light therapy stopped 228 +12 hours later - 256 +6 hours 254 + 6 hours - 268 +6 hours.... leading to more light therapy)

After his second dose of light, his levels came down to 207 on Wednesday morning at 10am. By Thursday morning (24 hours later) they were 218 and by today (48 hours later) they are 219.

The hospital have now discharged us saying the risk of any dramatic increases now is small.

...but I'm still worried. I must admit, writing that out as above makes me feel a bit more reassured as I can see his levels aren't creeping up at the same rate.. but even so.

Just in case it's relevant...
He was born at 37+5 by planned section (because of previous sections). He had some issues with regulating his breathing in the first 36 hours and was in NICU so breastfeeding was only established about 18 hours after birth. I know this can have contributed to his slow start on the jaundice front. He's entirely breastfed now and slowly starting to put weight back on after losing 11% initially.

I know what to look out for over the coming days to spot trouble (lethargy, yellow increasing again - not that I can tell much, he still looks very yellow to me - not feeding so well) but I guess I just feel a bit abandoned in this waiting.

Sorry if that's all a load of waffle. Thank you if you made it this far!

I guess what I'm looking for is anyone with any similar experience? Could you share any advice to get us through?

Have you got an IBCLC locally? The fact that he lost 11% suggests that milk transfer needs to be looked at. How often is he pooing?

You're anxious, this is completely understandable.

All you can do is keep a close eye - it can be helpful to keep a record of feeding, sleeping etc., review at the end of each day.

If you think anything isn't right don't feel worried about asking for a check.

I don’t think that sounds worrying. My daughter had phototherapy and her levels fluctuated quite a bit. His levels will start dropping as he feeds more. You do sound very worried though, which is understandable, but if the doctors aren’t concerned you shouldn’t be. Hope you’re getting enough help and rest.

Thank you for the messages so quickly! I am a worrier at the best of times and I think my hormones and tiredness are making it worse.

so I'm keeping track of everytime he feeds. He's currently feeding every 1.5 to 2 hours - and that's him waking for the feed. He doesn't cry very much just now really but will root around for food. He's then feeding for between 10-20 minutes each time. Wet nappies regularly and at least 4 bowel movements in 24 hours, maybe more (but it's almost like a constantly small stream of poop to be honest).

with my other children they were a mixed bag of feeders. One used to use me as a dummy and would feed for 40+ minutes at a time. My other two were more efficient and fed somewhat similar to this baby... but neither had this jaundice or weight loss issue.

on the weight front, he was 3.55 when born (7lbs 9) then he was 3.15 during the first round of phototherapy. As of yesterday he was 3.3kg.

a midwife is coming to weigh him again tomorrow. I think I'll ask her to do a jaundice test - assuming she can - for peace of mind. I really am finding this very stressful. I think it's because he already had one therapy session that failed to work. so I don't trust that his second round will have worked. Goodness me, I hate having anxiety.

Babies born at 37+5 weeks have a tricky time in that usual practice is to continue using the 37 week phototherapy threshold chart (which is much more conservative, for 38 weeks and above the threshold is to treat if bili > 350 so a big difference). But questionable if this is truly needed when you're this many days forward and the blood brain barrier is expected to be as mature as a term baby's. Really there is very little evidence that there is a risk for brain after 5-7 days barring some exceptional circumstances, and even then the real danger zone is above the "red line" not the blue phototherapy line.

If persistently yellow look after 2-3 weeks they would check levels again, this is to evaluate that not from another cause (not because of bilirubin adverse effects) but even then it is mostly "physiological" / breastfeeding associated especially if children are otherwise well.