the IVH is worse than we thought — The Bump

the IVH is worse than we thought

we were told Dash had a Level II brain bleed, but now they're saying it's more like a Level III and he is "at risk for developmental delays" and difficulties later in life.

He's stable and they're going to repeat the ultrasound on Monday to see if it has gotten worse over the weekend. If it has gotten worse, they're going to transfer him to the children's hospital for surgery to insert a reservior.

I know in my head that hearing that his bleed was worse than we first thought doesn't change all the progress he's made in this past week. But I still feel somehow that we've had a setback just knowing the possibility that he "could" and "might" have problems in the future.

(Our older son is speech delayed, so you'd think that we would be old hats at this developmental delay thing ... but it's still scary to have the foreknowledge ... will he be able to hold up his head? Will he walk? Talk? Have average intelligence? It's the Not Knowing that makes me ache the most.)

Re: the IVH is worse than we thought

  • I'm sorry Dash's IVH has gotten worse.  Yes, there are risks, but I want to give you a bit of hope.  I responded to one of your previous posts - not sure if you remember.  DD had a level 3 or 4 bleed - most likely it was a 4, but it depended on who was reading the scan.  She also has a reservoir.  I had one neurologist tell me the risks and she also added that DD most likely WILL be dumb and never walk.  (Ok, she didn't use the word dumb, but she was close.)  DD is now 6 months old, 3 months adjusted.  She is doing many things on a 6 month level and everything else at no lower than a 3 month level!!  She's wowing her therapists and all her doctors.  Be aware of the risks, but be determined.  Don't focus on the what ifs.  He deserves every shot at normality that you can possibly give him. We believe that our perseverence and our therapists' dedication have played a big role in DD advancing as well as she has.  (I also just think she has a strong-willed personality!)

    I would also sign your son up for as much therapy as possible.  An OT and a PT from the hospital work with DD 4 times a week (each twice).  Also an EI therapist comes once a week.  So every weekday morning there is a therapist at our house.  On weekends, we make time to do her therapy ourselves.

    When DD was at the Children's Hospital, one of our nurses told us about a set of twins that she knew that both had level 4 IVHs.  Their prognosis wasn't good.  Well guess what?  This year they BOTH are graduating from grad school with honors!

    I have heard SO many success stories of kids that have had level 3 or 4 bleeds.  Every parent that I have spoken to that has dealt with this has had the same advice for us and they are absolutely right... don't spend your DS's babyhood constantly looking at and scrutinizing what he is or isn't doing.  You will drive yourself nuts!  I will totally admit I fell into that trap for the first month or two DD was home.  Recently I realized just how much that was ruining my relationship with DD.  I enjoy my time with her so much more now.  

    I truly hope for the best for your son.  Stay strong Dash! 

  • Oh jen!  ::big e-hug::  I will keep you guys in my prayers and hope for the best that everything is a-okay!  Keep us posted!
  • My son was born term but had severe brain swelling and an abnormal EEG, the swelling was so bad that at one point they though he was missing parts of his brain b/c they couldn't see them. Noah was term and we are not sure what caused this injury, I got a WORST case prognosis. The not knowing drove me CRAZY. I did not enjoy him as an infant and still worry excessively. We were tracked by a neuro for cerebral palsy but thankfully after 1yr he was done seeing him do to the fact that he is developing on track or ahead all areas.?

    I am sorry you have to go through this, you are in my thoughts?

  • so sorry you are dealing with this, but I agree with the pps.  I don't have this experience with my own child, but I'm an EI special educator who has worked with some children with IVH.  Many of them do amazing well, much better than the initial prognosis.  Definitely get Dash involved in as much therapy as possible.  One boy I am thinking about in particular saw me, the OT and PT.  Another little girl also saw all three of us.  We recently reduced services for the little girl because she was diong so well.

    Good luck and you will be in my thoughts. 

  • We did not have to deal with IVH but I agree with everyone else about staying positive and not getting hung up on wost case scenarios.  DS was on 100% O2 on his oscillator for a while and we were given all the worst case scenarios and told how he needed to wean soon or we'd be facing some long term concequences.  However, he has turned out completely healthy, no long term lung, eye, or development issues thus far.  So know the risks but stay positive.  We'll be praying for you.
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