u/Pretty-Cheesecake447

A little background... I (26F) had B/G twins back in September. My water broke at 22w, I was admitted and gave birth at 30+0.

During a 2m NICU stay, they told me that my daughter, (currently 10m GA/ 8m CA) has grade 3 PVL confirmed by MRI. About a month ago now, she was also diagnosed with Cerebral Palsy but is unable to be diagnosed when it comes to the stage at this time due to her still being so young. So, I guess this is what I want to know...

For those of you that had little ones diagnosed with grade 3 PVL due to being a preemie (even if your kiddo hasn't been diagnosed with CP),

-What was your journey like?

-What are somethings that I should expect or look out for?

-What are some things that you had to find out the hard way or on your own?

-And where are you and your baby in that journey today?

After extended searching, I cannot find anything on grade specific research and/or studies outside of brief mentions in PVL generalized information. Honestly, it's frustrating. Not because, I think that these doctors and medical information are failing at informing us properly, but because, I need to go down this rabbit hole, so I know the worst to prepare for (God forbid) so I can still show up for the other 3 kiddos that need me still if things take a turn for the worst. I need to go down this rabbit hole so that I can help my baby girl, one of my very last 2 kiddos to have the best life and treatments that she could possibly have.

As a parent, as many other parents can probably attest too, I don't want to watch my baby suffer when I don't know what I can do to help or even begin to understand what it is that she could possibly be going through. I don't want to be the parent that sits idly by and knows nothing. I want to be the parent that has done the research, has looked into all the options, that knows the signs, and that does everything in their power to make sure that she is getting the help that she needs.

So please... I need help down that rabbit hole... because no amount of research has helped me even make the jump into understanding her world... even a little bit...

A little background... I (26F) had B/G twins back in September. My water broke at 22w, I was admitted and gave birth at 30+0.

During a 2m NICU stay, they told me that my daughter, (currently 10m GA/ 8m CA) has grade 3 PVL confirmed by MRI. About a month ago now, she was also diagnosed with Cerebral Palsy but is unable to be diagnosed when it comes to the stage at this time due to her still being so young. So, I guess this is what I want to know...

For those of you that had little ones diagnosed with grade 3 PVL due to being a preemie (even if your kiddo hasn't been diagnosed with CP),

-What was your journey like?

-What are somethings that I should expect or look out for?

-What are some things that you had to find out the hard way or on your own?

-And where are you and your baby in that journey today?

After extended searching, I cannot find anything on grade specific research and/or studies outside of brief mentions in PVL generalized information. Honestly, it's frustrating. Not because, I think that these doctors and medical information are failing at informing us properly, but because, I need to go down this rabbit hole, so I know the worst to prepare for (God forbid) so I can still show up for the other 3 kiddos that need me still if things take a turn for the worst. I need to go down this rabbit hole so that I can help my baby girl, one of my very last 2 kiddos to have the best life and treatments that she could possibly have.

As a parent, as many other parents can probably attest too, I don't want to watch my baby suffer when I don't know what I can do to help or even begin to understand what it is that she could possibly be going through. I don't want to be the parent that sits idly by and knows nothing. I want to be the parent that has done the research, has looked into all the options, that knows the signs, and that does everything in their power to make sure that she is getting the help that she needs.

So please... I need help down that rabbit hole... because no amount of research has helped me even make the jump into understanding her world... even a little bit...