What Works

IVH/PVL/Brain Bleed Development Resources

So I decided it was time to revive Wesley's blog, but for a different purpose this time. For those who don't know Wesley, he was a twin born at 1 lb 4 oz at 24 weeks. He had heart surgery, broviac (permanent IV) surgery, laser eye surgery, and because he got NEC (a horrible infection NICU babies get in the stomach) his first week in the NICU, he also had four stomach surgeries that resulted in a G-tube. He spent 149 days in the hospital before he was finally ready to say goodbye, the HAPPIEST day of our life! Oh and did I mention he had the worst brain bleed (IVH) you can have, a grade four on the left, three on the right along with the PVL (little cysts that get left behind as the blood retracts from the brain). Which brings me to the reason why I'm reviving Wesley's blog....

All parents who have a baby/child with IVH/PVL or a brain injury can relate to the horrible diagnosis that the doctors gave you.... not the actual diagnosis so much as the your child will never do anything diagnosis. We suffered through weeks and weeks of it in our NICU.... "your child is suffering," "he'll have Cerebral Palsy," "fixing his heart with surgery won't fix his head," "are you sure you want to give him this life saving drug with his condition," and on and on it went until my husband finally told the doctors do whatever it takes to save him and stop asking us about it!

I wanted to write this blog, though, because Wesley is a happy, healthy two year old now and I have found the resources online for mommies with IVH/PVL/brain injury babies out there is LACKING! There is plenty of information about brain injuries and what IVH/PVL are, how they are caused, how to prevent/treat them initially.... but what I have found very little of are positive stories about what to do now that he's home.... what works at home, what to try, what not to try, how long things take to learn, the best strategies to use, the best toys to use, etc. I am NO expert, and don't get me wrong Wesley has OT, PT, Speech, and Feeding therapists that are amazing... but they are just one resource and they don't know everything.

So, I just want to post for any mommies or daddies out there that have a baby or child with a developmental delay, for whatever reason, some things we've tried that have been successful for US in helping get Wesley closer to where he needs to be.... a never-ending process!!!