Brain Bleeds

jbranden12

We just found out we are dealing with a level 4 on the right side and a level 2 on the left. We are devastated.  Anyone have any advice?

caden1206

I haven't posted on this board before because my preemie (born at 25 weeks) is now 10 years old, but I felt that I might be able to offer some support for you.  My son was diagnosed with a grade II left ventricle bleed at his one month neurosonogram.  We were devestated just like you said above.  The neonatologist at the time tried to console me and said that she has seen babies pull through a variety of these bleeds with little to no effects.  She told me she saw Grade I's have an effect longterm and Grade IV have no effects longterm.  All I could do was hold onto hope that everything will be ok like you must do now.  To be honest for the first two years of his life I was worried sick about that bleed.  I am pleased to say that today my son has absolutely no residual effects of his bleed.  He is health and happy with a very bright future.  The best I can say is just hold onto hope that eveything will be ok.  I will be praying for your little one. 

rslhmg

I have no experience with this, but I will keep your Lo in my prayers and hope you have an outcome like pp.

Courtneyw04

I am so sorry that you are dealing with this. I still cry when I think back to the day the Drs pulled us into another room to tell us our son had a grade 3 brain bleed on one side. Just like you we were devastated. Our Dr told us that little babies are so resilient and their brains can compensate for any damage that is done by bleeds. Brain bleeds can resolve and improve. You would have no idea that our little boy had a brain bleed. My thoughts and prayers are with you!

thishappyhouse

I'm sorry that you are dealing with the shock of this news.  Devestated is a very normal feeling right now.  

Please know that there is a very wide range of outcomes for babies with IVH and that the news you have right now can only provide you a framework for the short and long term implications.... No one can tell you how she will be affected by this.  Babies are very resilient and many IVH babies do very well.  I will keep your little girl in my thoughts.  

DrRx

I'm sorry about the unfortunate news about the brain bleeds.  My little girl didn't have them, but I had a friend my age who was born at 28 weeks over 30 years ago with pretty bad ones.  She ended up needing shunts and had to have the shunts replaced when she was 13 years old and again at around 20.  However, she led a very active life, was part of the school's dance team, graduated college, and started a family of her own. 

As PPs have said, just because some bad things can happen to babies with IVH bleeds, it doesn't mean that they will definitely happen to your child.  It would be great if you could have an answer right away, but there is so much variation.  GL that they are able to resolve as much as possible.  T&Ps for you and your family. 

Mrs. Alice

I can't offer any advice but just echo what others have already said.  Huge hugs to you.  Sending good thoughts your way!

jcsntms06

I don't have any experience, but I just wanted to let you know I'm thinking and praying for your LO.

Pips09

No advice here, but I'm hoping for the best for you.

jbranden12

Thanks ladies. It's all I'm thinking about but I know there is just know way to know what will happen. The doctors are more focused on other things. Yesterday was rough. After we hit that news, Anna started having bradys and she hadn't done that since she was born! It was really scary. They ended up putting her back on the vent .  I am really disappointed.

zoeyandsummersmom

Hi, my daughter was born with a brain bleed and an infarct (small stroke) at birth. Her bleeds were in the brain matter not even in the ventricles, so there isn't a lot of information on outcomes. Unfortunately with brain bleeds, a lot of it is a wait and see game, but that doesn't mean you cannot be proactive. Make sure when your LO is home you get early intervention services in as soon as possible. Make sure you have a great pediatric neurologist and try to approach everything as a team - pediatrican, neuro, therapists, and parents (as well as any other specialists). So far, my DD is doing great except she won't eat by mouth and is fed 99% of the time via g-tube now in order to grow. She is a bit behind on her milestones, but most of that we think is because of her small stature and not her brain bleed. Good luck!

punky917

I am really sorry that you are going through this. It is a lot to take on top of just having a preemie in general. My 26 weeker (who is now 4) also had an IVH  which was grade III on one side of his brain. I was completely heartbroken when I found out, but like other people have mentioned, no one can tell you what the effects will be of it.My son turned out ok. He is pretty smart for his age and functioning just like any other 4 year old.

I know this is MUCH easier said than done, but you have to take it one day at a time and hope that everything is ok. Preemies are much stronger and resilient than they look. Thoughts and prayers are with you!

BabyG_

I am so sorry you are dealing with this.  Both of my kids were preemies and both had bleeds.  DD had grade 1s and PVL and DS had grade 2s.  They are both doing well today with no signs of issues from the bleeds.  Unfortunately, anyone will tell you that it is a wait and see issue. Many times, the bleed will resolve and no residual issues will remain.  My thoughts and prayers are with you and your LO.  I wish I could provide some more solid answers for you.