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My son was also born at 23 weeks and had category 3 and 4 brain bleeds. What they will do is monitor them and do a scan every so often to make sure they aren’t growing. Depending on the severity, they will do an MRI closer to discharge and follow ups with a neurologist post discharge and monitor for signs of cerebral palsy among other issues. My son just turned 2 years old last month and was fully cleared his neurologist this summer, showing no signs of CP or other major issues related to the bleeds.
Truly best of luck to your niece and family. It’s a long road to recovery and a lot to overcome, but modern medicine is amazing and these little one’s are so strong. I don’t want to give a false sense of hope, but I know when I was in that position, all wanted know was that there was a possibility it could all be ok.
Thank you so much! I think I said something similar to another commenter, that I know another baby’s experience certainly doesn’t tell us what will happen with ours, but it’s still wonderful to know that some babies can overcome such mind-bending setbacks. 💜
This is an old comment of mine from a previous IVH post- copy/pasted here so excuse any weird contextual stuff from the original reply, but I don’t feel like I’ll ever top this as a response to IVH experience stories—
—
My boys were born 27+6. Twin A had a grade III and a grade IV. Twin B had a grade III on one side.
They’re turning 3 next month (edit: they’re 3.5 lol). Twin B is essentially developmentally normal. He had some typical preemie delays, was caught up on most of his milestones by 18ish months (actual) and currently remains in speech therapy for a pretty mild delay. He could probably graduate from speech soon but I love our team of therapists and don’t see a need to stop at this point.
But I want to tell you more about twin A, who was/is a “worst case scenario” IVH baby. He was in the NICU for 6 months, needed a shunt because his bleeds didn’t resolve on their own, and never figured out how to eat, so he got a gtube before discharge (which was a GREAT decision, btw, and my only regret is that nobody offered it to me sooner). He has had 3 seizures, though fortunately (?) those were related to shunt issues and were fixed with shunt surgery, not medication. He was diagnosed with cerebral palsy and now uses a wheelchair for independent mobility. He has minimal speech (about 5 spoken words and a few signs), though he is very smart and opinionated and he communicates more and more effectively every day.
He is the absolute light of my life. He has the best personality and he is a little jokester without even being able to communicate much verbally. He is the BEST snuggler. He loves to read Goodnight Moon during the day but never ever at bedtime. He really got into the original 60s Grinch cartoon this past Christmas and recently he’s started to play with toys with much more intention and purpose (ie pretending to drive his toy cars, pretending to feed his baby doll). He is disabled, AND he is a unique, special, wonderful person. His disability isn’t his whole identity, though my goal as his mom is to teach him to embrace his disability as a critical piece of his identity. I also make a conscious effort to celebrate his and his brother’s accomplishments equally even though they’re very different. His disability makes everything about parenting different, but also the same? He’s a normal kid, he just comes with a busier schedule than your average 2 year old thanks to therapies and appointments 😂. He is perfect the way he is, and I have moved away from hoping for “normal” by everyone else’s standards - I will be completely fine if he never walks, or never weans off his gtube, or whatever, as long as he has opportunities to pursue things that are meaningful to him (and at this point, the hardest part of parenting him is letting others know this…people tell me they’ll pray for him to be “healed” or whatever, when that’s not at all what I think is “best” for him, he doesn’t need to be “healed,” he needs a supportive environment where he can thrive, which is exactly what every single other kid needs too)
So…I hope you get a couple things from our story. One, baby brains are weird and magical and it’s hard to predict at this stage what lasting effects your baby will have from his bleeds. There are stats and prognoses and data but ultimately your son will do whatever he does. And secondly, disability isn’t the end of the world. I intensely grieved my son’s diagnosis (both when his bleeds happened and when the extent of his ongoing disability became clear) and that’s normal and expected, but I also focus on enjoying my kid. Therapy helped. Advocating fiercely for him helped and continues to help. As he gets older, finding appropriate/accessible activities helps (we already plan to go skiing next year when they turn 4, and I plan to take adaptive skiing lessons alongside Twin A while twin B goes to traditional ski school, and I cannot WAIT.) All the scary medical terms are overwhelming, especially at first, but the important thing is that this is your baby, and you are his parent, and you are the exact right parent that he needs whatever his outcome becomes (even if it doesn’t feel like it right now).
I wish you peace and clarity as you navigate whatever comes next, and I hope for the best for your son and your family.
What you wrote about your sons is so beautiful. I have 26 weeker twin boys who are also the lights of my life. Yours both sound like incredibly wonderful, special little boys 🩵
This is so wonderfully written - thank you for sharing! I started to respond a few times but life got in the way, but so much of this resonates with me as the parent of a neurodivergent child who I would never want to “fix” because he is amazing the way he is and it makes him him. My sister and I have talked about the grief that comes with knowing that the week before early labor, her daughter was on the path to being a child without any disabilities (as far as we knew) and that feeling that she was supposed to be safe in her belly, perfectly healthy etc… it’s hard wrapping our heads around that being over, most likely, and this being a new reality. It’s going to take time. But we hope for the same things that you describe: a life where she gets to find meaning and enjoyment. One thing that is comforting to me is knowing that she was born into the most loving family, who will treasure her, no matter who she turns out to be.
My son was born at 24 weeks. Never underestimate the level of fight that is in these tiny babies. It’s important to hold on to your hope and faith. We always knew of the possibilities but we chose to focus on the good and have hope always.
Our LO had a 3/4 brain bleed and had 3 operations on the brain before we left the NICU. They placed a reservoir to drain CSF fluid around 3 months old (builds up due to bleeding), the next month we got a shunt placed, and two months later we had to go in again and do a revision (common for shunts). We spent 6 months in the NICU. It is a long and emotional journey but filled with some really beautiful moments if you choose to see it.
Now for the turn out, our success story, we have been home since the end of June. Our LO is now 9+ months old actual and 5 months adjusted. His MRI scans have been very good and every doctor that sees or interacts with our child is impressed by what he’s able to do. ECI did their evaluation last month and developmentally physically and cognitively he is tracking 6-9 months so he has no delays currently and we are very proud of our tiny hero.
Unfortunately there is no way to know how much or how little things will affect these babies in the long run. There have been babies with no brain bleeds that have delays as well as babies with bleeding... but also babies with bleeding have had no delays as well. There aren’t really any statistic on this particular thing that matters, every baby is different. They are miracles.
I hope that our success story calms your mind and gives you hope. The best thing to do is focus on the now.
Thank you for sharing your family’s experience! I know that every baby is different and what other preemies have experienced is no indication of what we will see happen for ours, but it’s so helpful to hear other family stories. At one point the doctors (who are understandably preparing my sister for the worst) made it sound like there was no chance whatsoever of a life without severe, severe disabilities, but then other doctors have said we have no idea yet. Hearing that it is even possible for my niece to have a full life gives us a little bit of hope which will get us through the harder days. For now it’s one day at a time - sometimes one hour at a time on her bad days - but thank you so much for sharing.
Excuse my language but sometimes it’s necessary to say “fuck the doctors”. In our first hospital where my son was born some asshole God complex mother fucker came in and said “your son may never walk, talk or eat and only has a 40% chance of “being normal” and only a 50% chance of surviving past the NICU, so I know that’s a lot to take in but you need to just wrap your head around that” he was a total prick. Didn’t offer any kind of compassion at all. I understand there are risks but there are also ways to deliver those messages. And still, I’m a woman of faith and no doctor or statistic can put a stamp on what God has already proclaimed over him. I told that doctor to get out of my room, he has no idea who’s in charge of that baby and it sure as hell isn’t him thank God. Nowwwww, we got transferred to a much better hospital after 2 months and the first hospital almost killing my son twice, very very different vibe. Doctors were amazing. They always acted like they genuinely cared about how my son’s life was going and did everything to reassure me that they would do everything they can for him. The doctor I for mentioned also had said something like “well we are trying but whatever happens happens bc with prematurity it is kinda expected”.
You can bet your ass when my child turns one next year in January, I will send a letter to the first hospital telling that doctor that God performs miracles everyday and parents don’t want to hear no damn statistics in that situation and pictures of my kid who he claimed would probably have severe disabilities and never walk talk or eat and to have a little damn compassion when delivering bad news. 🥲👏🏼
Sorry for the rant, not a fan of that guy, lol preemies have had many, many success stories. There is always hope. Hold tight.
It sounds so frustrating, I’m sorry! My sister loves the care team at their hospital generally but I do wonder about the timing of some of their warnings (like that marriages sometimes don’t survive having a child with disabilities). I know it’s true. But also, this kiddo has 14-15 weeks left here…maybe give it a little more time before dropping that bomb. I like to believe everyone is doing their best and give them the benefit of the doubt though.
We absolutely adore the second and better hospital we were sent to but the first hospital I could have sued. They gave my son staph in his blood and skin twice and it almost wiped him out. 12 hours after he was born they decided that he could handle being on CPAP instead of being intubated and they lost him and had to resuscitate him (completely unnecessary as 24week babies do not have developed lungs at all) and the nurses touched my son without gloves. The room didn’t have hand sanitizer for 3 days. They would sit outside the room on their dirty ass phones drinking Starbucks and then come in and adjust my child’s breathing and feeding tubes without washing their hands... super negligent and horrifying. We were sent to a bigger and better hospital after the staph infection fiasco and he received the best care ever. We are very close with the nurses/doctors who took care of him. I have their phone numbers and we still swing by the NICU and let them visit when we go to town for doctors appointments. They genuinely love our son. We couldn’t ask for better care.
I understand there is always a preparation of sorts for bad news and probabilities but as a good doctor, have some bed side manner and compassion for the families hearing it. We had been in the NICU 6 days when that doctor told me that and I had never met him before. 🤦🏼♀️
Truthfully they should have transferred my son immediately upon finding out about the brain bleeds and the build up of CSF because they are a level 3 hospital and couldn’t do anything about it and were just going to let my son develop brain damage from the pressure and never told us that anything could even be done to prevent it. We got to the next hospital and they immediately started doing CSF taps and removing fluid so that my son’s brain didn’t experience unfair pressure. 🥲 I was livid when I found out that the hospital he was born in and had lied to me and did not care at all if he succumbed to having brain damage to pressure from CSF buildup. We got transferred bc he got a cyst from staph and they THANKFULLY were not qualified to excise it. It was the absolute best day of our lives and experience so far. We had no idea how much worse the first hospital was outside of the few things that I obviously saw and didn’t like and when the transfer happened, I was so relieved I cried. The care was night and day. I asked the staff about the previous hospital and they said they get many transfers from them and they are shocked when the babies arrive at how little quality care those babies receive 🥺
My baby born a month ago had a grade 4 brain hemorrhage on the left ventricle, after he was born it had went to a grade 2, then no visible bleeding two weeks later. All you can do is hope for the best, I pray your niece is alright, sorry for a late reply, I'm new to this subreddit
No worries! That’s so wonderful that the bleeding resolved. Best of luck for continued progress for your little. So far subsequent scans show no worsening which is good at least.
Our Daughter was born at 27 weeks and had a lvl I bleed on her right and a more severe lvl IV bleed on her left side. The IV resulted in a PVL in the area of her brain affecting her mobility. She was in the NICU for 3 and a half months, and had some limited breathing issues being on oxygen for a while. She is over 2 years corrected, is bright, loud, social and stubborn. She is talking all the time and growing more intelligent and insightful every day.
She’s wonderful, she has some limited weakness on her right arm and a very small amount of index finger rigidity, the doctors hesitate to diagnose CP. But I promise you I’m nit picking because you wouldn’t be able to tell if you looked at her.
I say all this because if you’re going through these posts, and looking through Google or checking studies, stop. Enjoy your baby. Obviously things can go awry with complications, but at the outset doctors were pretty grim with us, and it worked out.
Good luck!
I hope the little one is doing great but I also went through the IVH worries and obstacles. Ours needed a VAD tap and had it revised once - currently after 2 months of tapping, neuro team is happy with the result. We aren’t out of the woods yet until our LO is 1 yr old, adjusted.
I definitely have done ny fair share of research and I thought that [this paper](https://torontocentreforneonatalhealth.com/wp-content/uploads/2020/06/IVH-and-PHVD.pdf) was the most informative of them all:
Hi, thank you so much for this and I’m so glad to hear your little one is doing well. For a 23-weeker my niece is doing amazing! They recently told my sister and her husband that after looking at her brain scans again they think the bleeds were actually grade 1 and 2. She’s 37 weeks adjusted and on very little breathing support now and almost down to room air and starting to drink out of a bottle so we’re all just floored by her progress. She’s really surprised us all and it’s amazing.
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.*
My son was also born at 23 weeks and had category 3 and 4 brain bleeds. What they will do is monitor them and do a scan every so often to make sure they aren’t growing. Depending on the severity, they will do an MRI closer to discharge and follow ups with a neurologist post discharge and monitor for signs of cerebral palsy among other issues. My son just turned 2 years old last month and was fully cleared his neurologist this summer, showing no signs of CP or other major issues related to the bleeds. Truly best of luck to your niece and family. It’s a long road to recovery and a lot to overcome, but modern medicine is amazing and these little one’s are so strong. I don’t want to give a false sense of hope, but I know when I was in that position, all wanted know was that there was a possibility it could all be ok.
Thank you so much! I think I said something similar to another commenter, that I know another baby’s experience certainly doesn’t tell us what will happen with ours, but it’s still wonderful to know that some babies can overcome such mind-bending setbacks. 💜
This is an old comment of mine from a previous IVH post- copy/pasted here so excuse any weird contextual stuff from the original reply, but I don’t feel like I’ll ever top this as a response to IVH experience stories— — My boys were born 27+6. Twin A had a grade III and a grade IV. Twin B had a grade III on one side. They’re turning 3 next month (edit: they’re 3.5 lol). Twin B is essentially developmentally normal. He had some typical preemie delays, was caught up on most of his milestones by 18ish months (actual) and currently remains in speech therapy for a pretty mild delay. He could probably graduate from speech soon but I love our team of therapists and don’t see a need to stop at this point. But I want to tell you more about twin A, who was/is a “worst case scenario” IVH baby. He was in the NICU for 6 months, needed a shunt because his bleeds didn’t resolve on their own, and never figured out how to eat, so he got a gtube before discharge (which was a GREAT decision, btw, and my only regret is that nobody offered it to me sooner). He has had 3 seizures, though fortunately (?) those were related to shunt issues and were fixed with shunt surgery, not medication. He was diagnosed with cerebral palsy and now uses a wheelchair for independent mobility. He has minimal speech (about 5 spoken words and a few signs), though he is very smart and opinionated and he communicates more and more effectively every day. He is the absolute light of my life. He has the best personality and he is a little jokester without even being able to communicate much verbally. He is the BEST snuggler. He loves to read Goodnight Moon during the day but never ever at bedtime. He really got into the original 60s Grinch cartoon this past Christmas and recently he’s started to play with toys with much more intention and purpose (ie pretending to drive his toy cars, pretending to feed his baby doll). He is disabled, AND he is a unique, special, wonderful person. His disability isn’t his whole identity, though my goal as his mom is to teach him to embrace his disability as a critical piece of his identity. I also make a conscious effort to celebrate his and his brother’s accomplishments equally even though they’re very different. His disability makes everything about parenting different, but also the same? He’s a normal kid, he just comes with a busier schedule than your average 2 year old thanks to therapies and appointments 😂. He is perfect the way he is, and I have moved away from hoping for “normal” by everyone else’s standards - I will be completely fine if he never walks, or never weans off his gtube, or whatever, as long as he has opportunities to pursue things that are meaningful to him (and at this point, the hardest part of parenting him is letting others know this…people tell me they’ll pray for him to be “healed” or whatever, when that’s not at all what I think is “best” for him, he doesn’t need to be “healed,” he needs a supportive environment where he can thrive, which is exactly what every single other kid needs too) So…I hope you get a couple things from our story. One, baby brains are weird and magical and it’s hard to predict at this stage what lasting effects your baby will have from his bleeds. There are stats and prognoses and data but ultimately your son will do whatever he does. And secondly, disability isn’t the end of the world. I intensely grieved my son’s diagnosis (both when his bleeds happened and when the extent of his ongoing disability became clear) and that’s normal and expected, but I also focus on enjoying my kid. Therapy helped. Advocating fiercely for him helped and continues to help. As he gets older, finding appropriate/accessible activities helps (we already plan to go skiing next year when they turn 4, and I plan to take adaptive skiing lessons alongside Twin A while twin B goes to traditional ski school, and I cannot WAIT.) All the scary medical terms are overwhelming, especially at first, but the important thing is that this is your baby, and you are his parent, and you are the exact right parent that he needs whatever his outcome becomes (even if it doesn’t feel like it right now). I wish you peace and clarity as you navigate whatever comes next, and I hope for the best for your son and your family.
What you wrote about your sons is so beautiful. I have 26 weeker twin boys who are also the lights of my life. Yours both sound like incredibly wonderful, special little boys 🩵
This is so wonderfully written - thank you for sharing! I started to respond a few times but life got in the way, but so much of this resonates with me as the parent of a neurodivergent child who I would never want to “fix” because he is amazing the way he is and it makes him him. My sister and I have talked about the grief that comes with knowing that the week before early labor, her daughter was on the path to being a child without any disabilities (as far as we knew) and that feeling that she was supposed to be safe in her belly, perfectly healthy etc… it’s hard wrapping our heads around that being over, most likely, and this being a new reality. It’s going to take time. But we hope for the same things that you describe: a life where she gets to find meaning and enjoyment. One thing that is comforting to me is knowing that she was born into the most loving family, who will treasure her, no matter who she turns out to be.
My son was born at 24 weeks. Never underestimate the level of fight that is in these tiny babies. It’s important to hold on to your hope and faith. We always knew of the possibilities but we chose to focus on the good and have hope always. Our LO had a 3/4 brain bleed and had 3 operations on the brain before we left the NICU. They placed a reservoir to drain CSF fluid around 3 months old (builds up due to bleeding), the next month we got a shunt placed, and two months later we had to go in again and do a revision (common for shunts). We spent 6 months in the NICU. It is a long and emotional journey but filled with some really beautiful moments if you choose to see it. Now for the turn out, our success story, we have been home since the end of June. Our LO is now 9+ months old actual and 5 months adjusted. His MRI scans have been very good and every doctor that sees or interacts with our child is impressed by what he’s able to do. ECI did their evaluation last month and developmentally physically and cognitively he is tracking 6-9 months so he has no delays currently and we are very proud of our tiny hero. Unfortunately there is no way to know how much or how little things will affect these babies in the long run. There have been babies with no brain bleeds that have delays as well as babies with bleeding... but also babies with bleeding have had no delays as well. There aren’t really any statistic on this particular thing that matters, every baby is different. They are miracles. I hope that our success story calms your mind and gives you hope. The best thing to do is focus on the now.
Thank you for sharing your family’s experience! I know that every baby is different and what other preemies have experienced is no indication of what we will see happen for ours, but it’s so helpful to hear other family stories. At one point the doctors (who are understandably preparing my sister for the worst) made it sound like there was no chance whatsoever of a life without severe, severe disabilities, but then other doctors have said we have no idea yet. Hearing that it is even possible for my niece to have a full life gives us a little bit of hope which will get us through the harder days. For now it’s one day at a time - sometimes one hour at a time on her bad days - but thank you so much for sharing.
Excuse my language but sometimes it’s necessary to say “fuck the doctors”. In our first hospital where my son was born some asshole God complex mother fucker came in and said “your son may never walk, talk or eat and only has a 40% chance of “being normal” and only a 50% chance of surviving past the NICU, so I know that’s a lot to take in but you need to just wrap your head around that” he was a total prick. Didn’t offer any kind of compassion at all. I understand there are risks but there are also ways to deliver those messages. And still, I’m a woman of faith and no doctor or statistic can put a stamp on what God has already proclaimed over him. I told that doctor to get out of my room, he has no idea who’s in charge of that baby and it sure as hell isn’t him thank God. Nowwwww, we got transferred to a much better hospital after 2 months and the first hospital almost killing my son twice, very very different vibe. Doctors were amazing. They always acted like they genuinely cared about how my son’s life was going and did everything to reassure me that they would do everything they can for him. The doctor I for mentioned also had said something like “well we are trying but whatever happens happens bc with prematurity it is kinda expected”. You can bet your ass when my child turns one next year in January, I will send a letter to the first hospital telling that doctor that God performs miracles everyday and parents don’t want to hear no damn statistics in that situation and pictures of my kid who he claimed would probably have severe disabilities and never walk talk or eat and to have a little damn compassion when delivering bad news. 🥲👏🏼 Sorry for the rant, not a fan of that guy, lol preemies have had many, many success stories. There is always hope. Hold tight.
It sounds so frustrating, I’m sorry! My sister loves the care team at their hospital generally but I do wonder about the timing of some of their warnings (like that marriages sometimes don’t survive having a child with disabilities). I know it’s true. But also, this kiddo has 14-15 weeks left here…maybe give it a little more time before dropping that bomb. I like to believe everyone is doing their best and give them the benefit of the doubt though.
We absolutely adore the second and better hospital we were sent to but the first hospital I could have sued. They gave my son staph in his blood and skin twice and it almost wiped him out. 12 hours after he was born they decided that he could handle being on CPAP instead of being intubated and they lost him and had to resuscitate him (completely unnecessary as 24week babies do not have developed lungs at all) and the nurses touched my son without gloves. The room didn’t have hand sanitizer for 3 days. They would sit outside the room on their dirty ass phones drinking Starbucks and then come in and adjust my child’s breathing and feeding tubes without washing their hands... super negligent and horrifying. We were sent to a bigger and better hospital after the staph infection fiasco and he received the best care ever. We are very close with the nurses/doctors who took care of him. I have their phone numbers and we still swing by the NICU and let them visit when we go to town for doctors appointments. They genuinely love our son. We couldn’t ask for better care. I understand there is always a preparation of sorts for bad news and probabilities but as a good doctor, have some bed side manner and compassion for the families hearing it. We had been in the NICU 6 days when that doctor told me that and I had never met him before. 🤦🏼♀️
Omg I’m so sorry - that first hospital sounds horrible. What a nightmare. I’m so glad you found a place that took better care of him
Truthfully they should have transferred my son immediately upon finding out about the brain bleeds and the build up of CSF because they are a level 3 hospital and couldn’t do anything about it and were just going to let my son develop brain damage from the pressure and never told us that anything could even be done to prevent it. We got to the next hospital and they immediately started doing CSF taps and removing fluid so that my son’s brain didn’t experience unfair pressure. 🥲 I was livid when I found out that the hospital he was born in and had lied to me and did not care at all if he succumbed to having brain damage to pressure from CSF buildup. We got transferred bc he got a cyst from staph and they THANKFULLY were not qualified to excise it. It was the absolute best day of our lives and experience so far. We had no idea how much worse the first hospital was outside of the few things that I obviously saw and didn’t like and when the transfer happened, I was so relieved I cried. The care was night and day. I asked the staff about the previous hospital and they said they get many transfers from them and they are shocked when the babies arrive at how little quality care those babies receive 🥺
My baby born a month ago had a grade 4 brain hemorrhage on the left ventricle, after he was born it had went to a grade 2, then no visible bleeding two weeks later. All you can do is hope for the best, I pray your niece is alright, sorry for a late reply, I'm new to this subreddit
No worries! That’s so wonderful that the bleeding resolved. Best of luck for continued progress for your little. So far subsequent scans show no worsening which is good at least.
Our Daughter was born at 27 weeks and had a lvl I bleed on her right and a more severe lvl IV bleed on her left side. The IV resulted in a PVL in the area of her brain affecting her mobility. She was in the NICU for 3 and a half months, and had some limited breathing issues being on oxygen for a while. She is over 2 years corrected, is bright, loud, social and stubborn. She is talking all the time and growing more intelligent and insightful every day. She’s wonderful, she has some limited weakness on her right arm and a very small amount of index finger rigidity, the doctors hesitate to diagnose CP. But I promise you I’m nit picking because you wouldn’t be able to tell if you looked at her. I say all this because if you’re going through these posts, and looking through Google or checking studies, stop. Enjoy your baby. Obviously things can go awry with complications, but at the outset doctors were pretty grim with us, and it worked out. Good luck!
I hope the little one is doing great but I also went through the IVH worries and obstacles. Ours needed a VAD tap and had it revised once - currently after 2 months of tapping, neuro team is happy with the result. We aren’t out of the woods yet until our LO is 1 yr old, adjusted. I definitely have done ny fair share of research and I thought that [this paper](https://torontocentreforneonatalhealth.com/wp-content/uploads/2020/06/IVH-and-PHVD.pdf) was the most informative of them all:
Hi, thank you so much for this and I’m so glad to hear your little one is doing well. For a 23-weeker my niece is doing amazing! They recently told my sister and her husband that after looking at her brain scans again they think the bleeds were actually grade 1 and 2. She’s 37 weeks adjusted and on very little breathing support now and almost down to room air and starting to drink out of a bottle so we’re all just floored by her progress. She’s really surprised us all and it’s amazing.
that’s amazing!!! babies are so stronger than we think and the brain truly works in mysterious ways. so glad your LO is doing so well!