So I just googled 'kernicterus' - the result of too much bilirubin - and scared the crap out of myself. To put it bluntly, too much bilirubin (greater than 25-30mg - and we were 29) can cause kernicterus, which is turn causes mental retardation, hearing loss, cerebral palsy, and a bunch of other words I cannot pronounce or even spell (or remember).
Reading through these case studies (with infants with levels as 23 and 27 - much lower than our 29 - and yet they still developed kernicterus) scared me and Brian so much that Brian actually turned off the Packer game and started reading over my shoulder. It warranted a phone call to the on-call neonatologist who also happened to be the one who admitted Scotty on Wednesday night.
She was wonderfully reassuring. She said she would be shocked if Scotty developed kernicterus, mainly because of his fetal age and weight when admitted. She said that at 8 days, the blood barrier in the brain is much better established than with a 3 or 4 day old, which is a huge protective factor. She also said his jaundice was primarily caused by the dehydration, which was easily remedied and there was a clear drop in his bilirubin levels within four hours, also a protective factor.
She said the last baby she saw who had kernicterus was a little girl at 4 days old whose levels were 54. Now that's high. She said 35mg at 8 days old is concerning, 29 warranted immediate action, but is still low enough to be okay. She repeated what our nurse said re: Scotty's current behavior, and he is eating like a champ and showing reactivity to stimulation and his environment. His reflexes are working and he has plenty of alert periods.
And, ironically enough, one of the first indications of kernicterus is hearing loss. I didn't mention it in the blog, but Scotty had a hearing test early Wednesday morning (same day as his admit). He passed with flying colors. She said the likelihood of the bilirubin spiking so fast - and she said 1 point an hour would be considered fast - is very unlikely. So Scotty's levels were probably rising very slowly, meaning he was in the 20s on Wednesday morning but with no ill effects, like the hearing loss. Thus highlighting he probably hasn't been adversely affected by the number 29. Thank you, God.
Kernicterus is also an umbrella disease, meaning if he doesnt' have it, he won't have mental retardation, hearing loss, celebral palsy, and all those other scary diseases. The bad part is that we won't know for several months - all of the case studies I read said it is usually diagnosed between 4-18 months of age. But again, we have enough protective factors to at least be able to sleep at night.
Interestingly, when I mentioned the MRI (initially broached by the Friday ped), she sounded shocked. She said the risks (general anesethia) are far greater than any info we would gain, and again, what would we do with that info? While the result of a false positive is rare, there is a chance it wouldn't show anything (a false negative) but Scotty could still have kernicterus. So, yet again, our stupid ped (again, not the one I like, but the older one) gave us more incorrect information. Unbelievable.
**Update** - the nurse just called and Scotty's levels are at 12. :-) Oh, such a good boy. His lights are turned off and they will be doing a recheck at 9am tomorrow morning. Hearing test will be repeated tomorrow, and she said there is a 75% chance he will be released. So...while I am so thankful he is doing so much better, I'll be honest, I'm terrified of him coming home again. I just don't trust myself (or our ped). So...I don't know. Just keep thinking good thoughts.
Reading through these case studies (with infants with levels as 23 and 27 - much lower than our 29 - and yet they still developed kernicterus) scared me and Brian so much that Brian actually turned off the Packer game and started reading over my shoulder. It warranted a phone call to the on-call neonatologist who also happened to be the one who admitted Scotty on Wednesday night.
She was wonderfully reassuring. She said she would be shocked if Scotty developed kernicterus, mainly because of his fetal age and weight when admitted. She said that at 8 days, the blood barrier in the brain is much better established than with a 3 or 4 day old, which is a huge protective factor. She also said his jaundice was primarily caused by the dehydration, which was easily remedied and there was a clear drop in his bilirubin levels within four hours, also a protective factor.
She said the last baby she saw who had kernicterus was a little girl at 4 days old whose levels were 54. Now that's high. She said 35mg at 8 days old is concerning, 29 warranted immediate action, but is still low enough to be okay. She repeated what our nurse said re: Scotty's current behavior, and he is eating like a champ and showing reactivity to stimulation and his environment. His reflexes are working and he has plenty of alert periods.
And, ironically enough, one of the first indications of kernicterus is hearing loss. I didn't mention it in the blog, but Scotty had a hearing test early Wednesday morning (same day as his admit). He passed with flying colors. She said the likelihood of the bilirubin spiking so fast - and she said 1 point an hour would be considered fast - is very unlikely. So Scotty's levels were probably rising very slowly, meaning he was in the 20s on Wednesday morning but with no ill effects, like the hearing loss. Thus highlighting he probably hasn't been adversely affected by the number 29. Thank you, God.
Kernicterus is also an umbrella disease, meaning if he doesnt' have it, he won't have mental retardation, hearing loss, celebral palsy, and all those other scary diseases. The bad part is that we won't know for several months - all of the case studies I read said it is usually diagnosed between 4-18 months of age. But again, we have enough protective factors to at least be able to sleep at night.
Interestingly, when I mentioned the MRI (initially broached by the Friday ped), she sounded shocked. She said the risks (general anesethia) are far greater than any info we would gain, and again, what would we do with that info? While the result of a false positive is rare, there is a chance it wouldn't show anything (a false negative) but Scotty could still have kernicterus. So, yet again, our stupid ped (again, not the one I like, but the older one) gave us more incorrect information. Unbelievable.
**Update** - the nurse just called and Scotty's levels are at 12. :-) Oh, such a good boy. His lights are turned off and they will be doing a recheck at 9am tomorrow morning. Hearing test will be repeated tomorrow, and she said there is a 75% chance he will be released. So...while I am so thankful he is doing so much better, I'll be honest, I'm terrified of him coming home again. I just don't trust myself (or our ped). So...I don't know. Just keep thinking good thoughts.
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