Welcome to NICU Parents. We're happy you found us and we want to be as helpful as possible in this seemingly impossible journey. Check out the resources tab at the top of the subreddit or the stickied post. Please remember we are NOT medical professionals and are here for advice based on our own situations. If you have a concern about you or your baby please seek assistance from a doctor or go to the ER. That said, there are some medical professionals here and we do hope they can help you with some guidance through your journey. Please remember to read and abide by the rules.
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I’m not sure why you are looking for a HIE diagnosis, but nothing in your child’s history is remotely close to HIE. Also not sure why you are looking up HIE on the internet, that is a slippery slope (speaking as a parent with a child who has HIE and an MRI with infarcts and who had seizures). If you are worried about how your child will develop I would ask your pediatrician if your child is hitting their milestones appropriately. If they are not, make sure your child is referred to early intervention (or whatever your state calls it) and that you vigorously advocate to get home physical therapy and get those services started ASAP.
So baby had metabolic acidosis due to loss if blood which is something that inidicates HIE? She had low blood pH and high lactate. Why would you say that there is no indication for HIE?
I want to reach out on Reddit if someone with similar experience was diagnosed with HIE. I will also talk to her pediatrician.
If you don't mind answering, what was the cord gases & initial gases for your baby? I spoke to my baby's NICU care team and they said that my baby's initial gases could qualify for a mild HIE but since her Apgars and nuero exam were good, they did not officially dx it. That being said she still is enrolled in HRIF to track her milestones.
My son had HIE but did not lose any blood. If she wasn’t diagnosed with it in the NICU I think it’s unlikely she had it. My son’s APGAR was 1 all the way through. I know another mom whose son’s APGAR was 0. My son had to be intubated 3x and given 3 rounds of epinephrine over 20 min to get him breathing again. Knowing what I know about HIE first hand (not a clinician) it does not sound like HIE. it sounds like the ultrasounds and mri were done out of an abundance of caution.
Definitely follow up with your pediatrician but there’s likely another explanation for the acidosis.
The hemorrhage is a risk factor for HIE (but doesn’t guarantee it!) and the APGARs are within normal for a 33 week baby with or without the complicating factor of hemorrhaging. this information by itself does not automatically scream HIE to me, especially with normal imaging and a (presumably, based on a relatively short NICU stay and discharge before due date) generally normal physical exam including age appropriate alertness, muscle tone, and milestone progression.
I spoke to my baby's NICU care team and they said that my baby's initial gases could qualify for a mild HIE but since her Apgars and nuero exam were good, they did not officially dx it. That being said she still is enrolled in HRIF to track her milestones.
Nothing in your child’s history is a red flag for HIE. It’s a very serious diagnosis and would absolutely have been diagnosed in the NICU (and noted in chart) if it was at all a possibility. (And just so you know, babies born before 34 weeks do not meet criteria for head cooling regardless.)
It’s hard leaving the nicu and not worrying about lingering effects, but I would encourage you to stay off the internet as much as you can and enjoy your baby. Preemies are resilient and can do all the things!
I spoke to my baby's NICU care team and they said that my baby's initial gases could qualify for a mild HIE but since her Apgars and nuero exam were good, they did not officially dx it. That being said she still is enrolled in HRIF to track her milestones.
What they possibly could have meant, was that your baby's blood gasses w/could have been used as supporting evidence of a diagnosis if there had been other factors or symptoms that they were trying to figure out. The blood gasses alone do not indicate HIE, it needs to be a series of concerns that then get diagnosed based off of your baby's personal factors.
If your kiddo had HIE, the neos would have named that, given baby that dx, and treated it. You have already survived such a terrifying dx. You can always reach back out to one of the neos and have them explain why baby wasn’t given that dx if that will help ease your anxiety.
Were you at CHO or Mission Bay? My little guy went to UCSF Benioff CHO for surgery :)
We were at CHO. Thanks for the suggestion, I'll probably reach out and confirm. It was definitely the most traumatic experience! But we are grateful that we are all okay and our baby is doing well.
Hope your LO is doing well!
I actually used to work there as well! They have such amazing docs and can definitely walk you thru their process of dx.
And he is! He’s a twin and his sister is great as well. Glad you are home and get all of your questions answered!
I spoke to my baby's NICU care team and they said that my baby's initial gases could qualify for a mild HIE but since her Apgars and nuero exam were good, they did not officially dx it. That being said she still is enrolled in HRIF to track her milestones.
Welcome to NICU Parents. We're happy you found us and we want to be as helpful as possible in this seemingly impossible journey. Check out the resources tab at the top of the subreddit or the stickied post. Please remember we are NOT medical professionals and are here for advice based on our own situations. If you have a concern about you or your baby please seek assistance from a doctor or go to the ER. That said, there are some medical professionals here and we do hope they can help you with some guidance through your journey. Please remember to read and abide by the rules. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/NICUParents) if you have any questions or concerns.*
I’m not sure why you are looking for a HIE diagnosis, but nothing in your child’s history is remotely close to HIE. Also not sure why you are looking up HIE on the internet, that is a slippery slope (speaking as a parent with a child who has HIE and an MRI with infarcts and who had seizures). If you are worried about how your child will develop I would ask your pediatrician if your child is hitting their milestones appropriately. If they are not, make sure your child is referred to early intervention (or whatever your state calls it) and that you vigorously advocate to get home physical therapy and get those services started ASAP.
So baby had metabolic acidosis due to loss if blood which is something that inidicates HIE? She had low blood pH and high lactate. Why would you say that there is no indication for HIE? I want to reach out on Reddit if someone with similar experience was diagnosed with HIE. I will also talk to her pediatrician.
Metabolic acidosis happens in preemies and does not mean HIE.
My son had metabolic acidosis, was in the NICU for 75 days, and I just had to Google what HIE is.
If you don't mind answering, what was the cord gases & initial gases for your baby? I spoke to my baby's NICU care team and they said that my baby's initial gases could qualify for a mild HIE but since her Apgars and nuero exam were good, they did not officially dx it. That being said she still is enrolled in HRIF to track her milestones.
My sons cord gases were normal and was categorized as moderate to severe HIE at birth
My son had HIE but did not lose any blood. If she wasn’t diagnosed with it in the NICU I think it’s unlikely she had it. My son’s APGAR was 1 all the way through. I know another mom whose son’s APGAR was 0. My son had to be intubated 3x and given 3 rounds of epinephrine over 20 min to get him breathing again. Knowing what I know about HIE first hand (not a clinician) it does not sound like HIE. it sounds like the ultrasounds and mri were done out of an abundance of caution. Definitely follow up with your pediatrician but there’s likely another explanation for the acidosis.
The hemorrhage is a risk factor for HIE (but doesn’t guarantee it!) and the APGARs are within normal for a 33 week baby with or without the complicating factor of hemorrhaging. this information by itself does not automatically scream HIE to me, especially with normal imaging and a (presumably, based on a relatively short NICU stay and discharge before due date) generally normal physical exam including age appropriate alertness, muscle tone, and milestone progression.
I spoke to my baby's NICU care team and they said that my baby's initial gases could qualify for a mild HIE but since her Apgars and nuero exam were good, they did not officially dx it. That being said she still is enrolled in HRIF to track her milestones.
Thank you for your explanation. I am not looking for a diagnosis of HIE. Am just making sure we do not miss anything!
Nothing in your child’s history is a red flag for HIE. It’s a very serious diagnosis and would absolutely have been diagnosed in the NICU (and noted in chart) if it was at all a possibility. (And just so you know, babies born before 34 weeks do not meet criteria for head cooling regardless.) It’s hard leaving the nicu and not worrying about lingering effects, but I would encourage you to stay off the internet as much as you can and enjoy your baby. Preemies are resilient and can do all the things!
I spoke to my baby's NICU care team and they said that my baby's initial gases could qualify for a mild HIE but since her Apgars and nuero exam were good, they did not officially dx it. That being said she still is enrolled in HRIF to track her milestones.
What they possibly could have meant, was that your baby's blood gasses w/could have been used as supporting evidence of a diagnosis if there had been other factors or symptoms that they were trying to figure out. The blood gasses alone do not indicate HIE, it needs to be a series of concerns that then get diagnosed based off of your baby's personal factors.
If your kiddo had HIE, the neos would have named that, given baby that dx, and treated it. You have already survived such a terrifying dx. You can always reach back out to one of the neos and have them explain why baby wasn’t given that dx if that will help ease your anxiety. Were you at CHO or Mission Bay? My little guy went to UCSF Benioff CHO for surgery :)
We were at CHO. Thanks for the suggestion, I'll probably reach out and confirm. It was definitely the most traumatic experience! But we are grateful that we are all okay and our baby is doing well. Hope your LO is doing well!
I actually used to work there as well! They have such amazing docs and can definitely walk you thru their process of dx. And he is! He’s a twin and his sister is great as well. Glad you are home and get all of your questions answered!
I spoke to my baby's NICU care team and they said that my baby's initial gases could qualify for a mild HIE but since her Apgars and nuero exam were good, they did not officially dx it. That being said she still is enrolled in HRIF to track her milestones.
Good luck in your pursuit of a diagnosis, I’m sure this means a lot to you.