+ Reply to Thread
Page 1 of 2 12 LastLast
Results 1 to 10 of 14
  1. #1
    Join Date
    Sep 2008
    Posts
    115
    Thanks
    129
    Thanked
    15
    Reviews
    0

    Default Brain Bleed, EVDs.......

    Hi Everyone

    My sweet baby boy had a bleed on his brain at 5 days old. He is now nearly 4 months old and, after some 6+ weeks in hospital, he is home again with us. After many many tests and doctors and scans and MRIs and other horrid things, the doctor still have no definitive reason for the bleed and can't really tell us much more than 'wait and see'. He is doing ok, I guess, though there is definitely some damage to his eyes (perhaps 3rd nerve damage but again, wait and see!) and we have started on the road of doctor/speech/physio/OT etc visits. Bubby had 2 EVDs during his time in hospital but then the bleed/clot/blockage cleared itself out and pretty much we were able to bring him home very soon after that.

    I guess I am hoping that there might be some other people around who might have had similar issues with their kids or who might just be able to offer me some advice on how I am feeling and coping these days. I think that there is a massive level of grief on my behalf for the fact that I feel so ripped off that there was no enjoyment of having a new baby and that I was so physically removed from him for so long. At the same time I feel like I need to smack myself around the head and be grateful (which I truly am!) that he is still here and is doing ok. But when does the horror of him having been so sick fade? When can I look at him and not feel sad for what he's been through and not worry about his future? I can rationalise that these feelings are all probably quite normal to have but then I also wonder that maybe I should be getting past it all now? Do I need to get help or will all this yuk fade more as time goes on?

    Anyway, apologies for the confused nature of this post. I have been thinking about writing it for so long but have really struggled to get down my feelings down in any logical type of order. Not sure that I have really succeeded much this time either.......

  2. #2
    Join Date
    Sep 2009
    Posts
    4,664
    Thanks
    1,961
    Thanked
    2,569
    Reviews
    6
    Achievements:Topaz Star - 500 postsAmber Star - 2,000 posts
    I don't have any experience with your situation but the feelings you describe are understandable. Wanted to send you hugs.

  3. #3
    Join Date
    Sep 2008
    Posts
    115
    Thanks
    129
    Thanked
    15
    Reviews
    0
    Thanks amyd! Have been lying here in bed with my little darling and just reminding myself to enjoy himself and his loveliness! Easy to do when he is so cute!!

  4. #4
    Join Date
    Jan 2012
    Location
    Perth, Western Australia
    Posts
    1,914
    Thanks
    364
    Thanked
    1,502
    Reviews
    0
    Achievements:Topaz Star - 500 posts
    Massive hugs
    l understand the anxiousness about "wait and see" and all of the follow up appointments with people casting a scrutinous eye over your little one! My daughter was born at 25 weeks and its been a long road of waiting and hoping there was no permanent damage from the oxygen depravation or the seizures or many of the other things.
    The feeling is absolutely normal and with time it has gotten better for me, not passed completely, but it is better. Taking things day by day and not thinking about mons down the track helps too (but it's easier said than done!)

  5. #5
    Join Date
    Sep 2008
    Posts
    115
    Thanks
    129
    Thanked
    15
    Reviews
    0
    Quote Originally Posted by GM01 View Post
    Massive hugs
    l understand the anxiousness about "wait and see" and all of the follow up appointments with people casting a scrutinous eye over your little one! My daughter was born at 25 weeks and its been a long road of waiting and hoping there was no permanent damage from the oxygen depravation or the seizures or many of the other things.
    The feeling is absolutely normal and with time it has gotten better for me, not passed completely, but it is better. Taking things day by day and not thinking about mons down the track helps too (but it's easier said than done!)
    Thank you so much for your reply and glad to hear that you felt better as time passed. I am sure I am doing better too, certainly there are many less tears from me these days!

  6. #6
    Join Date
    Sep 2008
    Posts
    115
    Thanks
    129
    Thanked
    15
    Reviews
    0
    Bump bump to see if anyone else has a happy story of recovery 😃

  7. #7
    Join Date
    Aug 2009
    Posts
    3,678
    Thanks
    788
    Thanked
    1,847
    Reviews
    0
    Achievements:Topaz Star - 500 postsAmber Star - 2,000 posts
    Not my own story...but I met the most inspirational mum the other day.

    Her little one had a stroke a few days after birth and they were given very low expectations for the future...never to walk or talk or even make eye contact.

    Well, I met her on Friday and she was a walking (running) and talking 10 year old miracle. She wears AFO to help support her and yes, she still has some challenges...but she was happy and smiling and gorgeous She has a lot of therapy but goes to a special ed school 3 days a week. She learnt to walk when she was 7 and her speech has come on great guns since she was 8. She was dancing with some of the girls at our cheer club while waiting for her big sister...she had some very cool moves

    Her mum is amazing...never gave up (although admitted to having many low points) and she was just so amazing. I was having a bad day and she not once made me feel guilty for my problem being less than hers...i wish i could go back and say thank you to her....i am really hoping they join and i do get to see them both again.

    I know her story is on youtube but I cannot find it...i will keep looking and if i find it I will come back and post it for you.

  8. #8
    Join Date
    Sep 2008
    Posts
    115
    Thanks
    129
    Thanked
    15
    Reviews
    0
    Thank you @RiverSong

    These are just the type of things I need to hear - just that people get through the rubbish times and things are ok in the end. Thank you

  9. #9
    Join Date
    Dec 2013
    Posts
    864
    Thanks
    374
    Thanked
    481
    Reviews
    0
    Achievements:Topaz Star - 500 posts
    Slightly different situation but have experienced similiar feelings.
    My ds received a birth injury from the vacuum, a subgaleal hematoma which is bleeding between the brain and the skull. Thankfully it clotted. He's just shy of 6months and his head has finally almost healed, the blood has taken all this time to clot and reabsorb back into his body (so he's had a big lump on his head!). I asked the paediatrician if this would impact future development, he really had no idea and said you'll just have to wait and see. I also asked if my son was to play contact sport or fall over and hit the back of his head in the future, would he be at risk of another serious head injury, he said it shouldn't but couldn't really say for sure. It's been frustrating at times not having definitive answers and always having to look out for 'changes in behaviour ', reaching milestones etc. But I've learnt to take each day as it comes and not spend too much time worrying about the future and what may or may not happen. All I can do is be in the now and support bub where I can. I've had many different feelings over the course of time, anger at the ob that delivered him, many tears of sadness because I felt I had failed him and caused him pain and suffering, and of course guilt. It's much better now but on the odd night when I'm trying to go to sleep, I think about it and get sad. I don't think I'll ever fully get over it but nothing can replace my joy and happiness that he's here with us today.
    Hugs to you.

    Sent from my HTC_PN071 using The Bub Hub mobile app
    Last edited by Koarlo; 02-02-2014 at 20:19.

  10. #10
    Join Date
    Sep 2008
    Posts
    115
    Thanks
    129
    Thanked
    15
    Reviews
    0
    Oh @Koarlo how difficult is the "wait and see" line?!? Our time has been such a lesson in patience for me and I continue to learn to take each day and each achievement as it comes. Hugs to you and to your bubba!


 

Similar Threads

  1. Big bleed yesterday
    By MrsJorre in forum Pregnancy & Birth General Chat
    Replies: 9
    Last Post: 05-02-2013, 11:21
  2. Mid Cycle Bleed....
    By Manny in forum Conception issues & ttc
    Replies: 6
    Last Post: 14-08-2012, 15:05
  3. Implantation bleed??? or not
    By 2gemini2009 in forum Pregnancy & Birth General Chat
    Replies: 2
    Last Post: 02-08-2012, 19:15

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
free weekly newsletters | sign up now!
who are these people who write great posts? meet our hubbub authors!
Learn how you can contribute to the hubbub!

reviews
learn how you can become a reviewer!

competitions

forum - chatting now
christmas gift guidesee all Red Stocking
WaterWipes
Give your babies bottom a gift this Xmas! They are the only wipe made using just water and a drop of grapefruit seed extract and may help avoid nappy rash. Check out the great reviews on bubhub and see our website for more info and availability.
sales & new stuffsee all
Pea Pods
Buy 2 Award Winning Pea Pods Reusable One Size Nappies for only $38 (in your choice of colours) and receive a FREE roll of Bamboo Liners. Don't miss out, we don't usually have discounts on the nappies, so grab this special offer!
Special Offer! Save $12
featured supporter
Carmels Beauty Secrets
An online beauty and wellness site which offers simple and effective time saving methods and tips which help you look younger for longer.
gotcha
X

Pregnant for the first-time?

Not sure where to start? We can help!

Our Insider Programs for pregnancy first-timers will lead you step-by-step through the 14 Pregnancy Must Dos!