Preemies with level 2 brain bleed question

finallyreilly

My friend had her twins at 30 weeks and one of them has a level 2 brain bleed.  He has had 3 spinal taps so far to drain fluid from his brain that is not draining into his spinal cord.  Our NICU baby never had this issue so I wasn't sure how common it is in very early preemies.  He was only 2lb8oz and birth but is gaining weight nicely - now over 3lbs.   Anyone have this with their preemie?  Did they have to have surgery?  How long did it take to resolve?

TIA!

magdalina.h

Aidan had a severe bleed that caused extreme brain damage. They never told us the level, but I'm assuming it's a level 4. They said they couldn't do surgery on Aidan because he was a micro-preemie (28 1/2 wks). The bleed did dissolve on it's own, but had already caused the damage.  I know my story is scary, but it's my reality of dealing with such a severe bleed.

I believe right now is just a waiting game. They will probably do some CT scans to look for damage.  Our NICU Dr told us that bleeding is common in preemies, but the type of bleed that Aidan had isn't.

ayram

Little Isaac (27 w 3) has a Grade 1 and a possible Grade 2 bleed.  I was told that 1-2 are very mild and will not cause long-term damage.  70% of Grade 3 bleeds will not cause long term damage.  We are just doing ultrasounds every  few weeks to monitor and they should resolve themselves.

finallyreilly

magdalina.h:

Aidan had a severe bleed that caused extreme brain damage. They never told us the level, but I'm assuming it's a level 4. They said they couldn't do surgery on Aidan because he was a micro-preemie (28 1/2 wks). The bleed did dissolve on it's own, but had already caused the damage.  I know my story is scary, but it's my reality of dealing with such a severe bleed.

I believe right now is just a waiting game. They will probably do some CT scans to look for damage.  Our NICU Dr told us that bleeding is common in preemies, but the type of bleed that Aidan had isn't.

I am so sorry for your loss.  How heartbreaking.  Thanks for responding.

finallyreilly

ayram:

Little Isaac (27 w 3) has a Grade 1 and a possible Grade 2 bleed.  I was told that 1-2 are very mild and will not cause long-term damage.  70% of Grade 3 bleeds will not cause long term damage.  We are just doing ultrasounds every  few weeks to monitor and they should resolve themselves.

Thanks.  So far they aren't saying any brain damage at this point and they are monitoring as well.

magdalina.h

finallyreilly:

magdalina.h:

Aidan had a severe bleed that caused extreme brain damage. They never told us the level, but I'm assuming it's a level 4. They said they couldn't do surgery on Aidan because he was a micro-preemie (28 1/2 wks). The bleed did dissolve on it's own, but had already caused the damage.  I know my story is scary, but it's my reality of dealing with such a severe bleed.

I believe right now is just a waiting game. They will probably do some CT scans to look for damage.  Our NICU Dr told us that bleeding is common in preemies, but the type of bleed that Aidan had isn't.

I am so sorry for your loss.  How heartbreaking.  Thanks for responding.

Thank you for asking so I could talk about my favorite subject. :-)  

JrzyMeeba1

Hi there.. first off, congrats to her friend on her twins. Secondly, I can help a bit, but my situation is obviously quite a bit different.

Both of my twin boys had brain bleeds at birth. Parker had grade 4 on both sides and passed away four short days after birth. Hunter had a grade 4 on the left, and a grade 2 or 3 on the right (the docs all have differing opinions as to the level.)

Nonetheless, as the bleeds were clotting and resolving, they started to do spinal taps on Hunter as the cerebral spinal fluid was not draining properly from his brain. The body constantly produces CSF, so when the drainage system isn't working properly (Hunter's bleed was essentially clogging the drainage).. there's nowhere for the fluid to go.

Draining with a lumbar puncture is one way.. eventually they resorted to doing ventricular punctures (drawing fluid directly from the ventricle, where the fluid is in the brain.) They  needed to wait for him to be large enough to do any type of surgery (he was only 1lb 12oz at birth) so the taps were done while we hoped things would resolve on their own.

Long story.. but his drainage system never recovered. They diagnosed him with acquired hydrocephalus (excess fluid in the brain) and placed a reservoir near the front of his head. This is basically an access point for the docs to manually draw fluid from his ventricle without having to find a new path each time. The next step was a shunt a month later, when he was large enough and the issue still hadn't resolved itself.

Apparently, it's not common for things to get that far, but it can happen with any grade bleed if it's in the right spot (or wrong spot, technically.)

Hunter now has a shunt in his brain, permanently, to automatically reroute the fluid to his abdominal cavity when the pressure in his brain gets to a certain level.

Looking back, as afraid of the shunt as we were (because it was a permanent device in our son's brain) I wish we would have pushed to get it sooner. It made a world of difference for him. We live with the worry that it blocks or malfunctions, as devices are apt to do.. but it was a solution that allowed us to take our son home.

The recovery from the shunt surgery was relatively quick. We were in the hospital so long because he was only 26 weeks gestation at birth, and we had breathing and feeding issues to deal with as well. The shunt only helped in the other areas.

Please email me at jasminabard at hotmail dot com or check out my blog (link in siggy). Feel free to give my story and contact info to your friend, and let her know she's in my thoughts. Tell her to start a journal or blog, as it's an invaluable tool to look back at later.

And one last thing. She is the one constant for her twins.. she should measure head circumference daily for her own records, as each new nurse may place the tape in a slightly different manner (for all they claim they measure the same.) Watching head circumference is all part of monitoring excess fluid in the head.

Good luck, and I apologize for being so long-winded! Please don't hesitate to ask any other questions!

Karen