i've just gone and upset myself :(

[AP]

for some reason i started to trawl through the net about brain bleeds. i just want someone to say"my baby had a big brain bleed but they are totally fine now"

and its not happening.

I just want her to be ok! I keep telling myself "whos to say I didnt have one?" Im alright?!(i was a 29weeker)

 

[grumpymoo]

Its not something I know anything about but wanted to send you big hugs
Also looking on the net can sometimes be the worst thing to make your brain leap to the worst possible thing, we all do it!

 

[3 girlies]

i have no advice other than to say dont google things, it comes up with the worst case scenarios.

 

[nkbapbt]

HEY! You should read through Lakai's story then! =)) He had a grade IV (the worst you can have) brain bleed. We were told all about the horrible outcomes, I did what you did and read ALL these heartbreaking stories about brain bleeds. I had myself convinced that my son would be so disabled and delayed.

All the doctors kept giving us stats..and the "worst" case scenarios.

Lakai was part of an MRI study while in the NICU and had two done, the first one showed his brain was developing totally normally. And the second one showed he had some brain damage, very very minor but there was some damage where the blood had resolved.

He is now 8 almost 9 months corrected...he just had his first actual birthday. (he was born at 24+4weeks and suffered more than just a brain bleed that could have resulted in CP or delays). He is not delayed in the least bit, he just had his 8m Neonatal Follow up appointment and he was assessed at 10 months developmental age across the boards, except expressive language because of his paralyzed vocal cord (so you just cannot hear his voice because it's raspy still).

The doctors all say he is a miracle now, and its like he never had a bleed. They said its very unlikely he would develop CP from his bleed at this point.

There ARE positive stories out there. I just find you won't find them online...I have theories as too why, but I won't get into that now.

Don't read the negative stories. Just be aware there are chances, but there are also success stories out there!

I am not sure what degree of bleed your baby had, but if she is meeting her milestones there is usually very little to worry about. Do you have any OT's or anything? Follow up clinic at the hospital?




Im always here if you need to chat or have any questions!

 

[Foogirl]

Never, ever google this kind of stuff! I found with all the problems I had, there were very few "It happened to me but it was fine" stories. People just don't seem to spend their time telling the good news.

We were told that Abby has cysts on her brain but they are benign and are outwith the ventricles. The best advice I got from the pediatritian was "take your baby home and enjoy her, what will be will be"

We wont know until she gets older if there will be any effects and I would drive myself nuts if I considered every "what if" We used the internet to research only to find out what questions we needed to ask. Everybody's babies are different and Alex will do her own thing and you will find a way to deal with whatever life throws at you.

Understand the best case, understand the worst case and ask them what you need to be on the look out for and when. But remember that our babies will always do things differently from full term babies so don't worry that any perceived delay is necessarily a problem.

Enjoy her (especially since she had her biiiig poo!!) and what will be will be. Worrying wont change it, it will only make this part more difficult for you.

 

[armywifettc]

Thought I would also let you know my daughters story. She was 7 weeks early and they found is I remember right a grade 3 on her along with hydrocephalus. She is now a happy healthy 11 year old. She does have a little trouble with her attention span and has had to have some eye surgery as the muscles were weak (Lazy eyes) But she is doing great. The last time she was to the doc for her head was when she was around 4 we now just watch for signs or symtoms. Hope this helps you some. you can PM me if you have questions.

 

[nkbapbt]

Never, ever google this kind of stuff! I found with all the problems I had, there were very few "It happened to me but it was fine" stories. People just don't seem to spend their time telling the good news.

We were told that Abby has cysts on her brain but they are benign and are outwith the ventricles. The best advice I got from the pediatritian was "take your baby home and enjoy her, what will be will be"

We wont know until she gets older if there will be any effects and I would drive myself nuts if I considered every "what if" We used the internet to research only to find out what questions we needed to ask. Everybody's babies are different and Alex will do her own thing and you will find a way to deal with whatever life throws at you.

Understand the best case, understand the worst case and ask them what you need to be on the look out for and when. But remember that our babies will always do things differently from full term babies so don't worry that any perceived delay is necessarily a problem.

Enjoy her (especially since she had her biiiig poo!!) and what will be will be. Worrying wont change it, it will only make this part more difficult for you.

Very well said. Can I ask what the cysts were caused from? A bleed? Or?

 

[premmiemum123]

Everyone above is right, don't google stuff as there are never any feel good stories and most of the info on there is misleading or wrong. I googled premature baby stuff at the beginning of our journey and was horrified at what I found and was a right state all the way through.

What will be, will be. Emily had a 4 minute apnea where they didn't think they were going to get her back, thankfully she was resuscitated successfully - I was told the brain starts to die after 3 minutes of lack of oxygen so as you can imagine I was a mess afterwards. We don't know what the long term affect will be and I was told by a nurse as above, enjoy Emily and don't think about the future, you can't control it and what will be will be...so many premature babies suffer from brain bleeds and go on to be perfectly well as Lakai has proven - he has done so well, you just don't hear enough of these stories, as a human race we tend to dwell on the negative...

Alex is so gorgeous, I love the recent photo...you are so lucky...
I can't believe you were a 29 weeker! Wow that is amazing! x

 

[nkbapbt]

I agree that there tends to be less positive stories because frankly...the positive stories are off enjoying their babies and do not post about them. I think they just don't take the time to write online about them.

And that's the main reason I do.

There are good endings out there, I just don't think Google is the best place to look for them.

I honestly wish someone (maybe I should) start a website for positive outcomes....because man oh man, there sure are enough negative sites. I was actually asked to LEAVE one preemie forum because I was posting in their words "too much positive" stuff and they were getting complaints from other moms/dads who posted there. I was shocked...so who's to say I am the first that has happened too? I doubt I am.

 

[Marleysgirl]

Andrew has a pre-birth intercranial bleed in the temporal lobe, not sure how it would have been graded. He's had an MRI scan and the bleed was confirmed as being on the brain side of the membrane, but his brain is growing normally. They cannot tell us whether this will have any effect, whether there will have been damage, the consultant says that all she can do is monitor his development.

To be honest, I hadn't even thought of googling for stories of others with the problem!

 

[AP]

Thanks ladies. I really upset myself. It's one of the reasons I cant leave OH either. I couldnt cope myself!

I think someone 'up there' is just telling me to push on.

Its true, what will be will be be. I spent days worrying about it when were were given the news that Alex bleed was a Grade IV on one side. No-one actually told me what Grade it was until I spotted it on the PC's(whilst collasping with after birth pains in the NICU....sigh, what a drama queen;rofl

So I may never have know. I did bring it up with the specialist and I dont think he was too keen the fact i had seen the Grade, so it makes me wonder about the severity at all.

I havent had any follow ups. She had weekly brain scans and it had reabsorbed itsself. We didnt need any shunts or anything, a little fluid was found which also resolved.

nkbapbt I think a website it a VERY good idea. You cant help googling when your baby lands up in NICU/SBCU, and its only inevitable that you're going to get more upset - something you dont need at a terrifying time. If you're serious about starting one I would LOVE to help out and get involved.

Sometimes we just need that hope.

pmsl ay Foogirl.... god bless that poo!

 

[Foogirl]

Very well said. Can I ask what the cysts were caused from? A bleed? Or?

There wasn't a bleed. They don't know if the cysts were caused by the birth, or had formed in the womb. I'm led to believe that brain cysts aren't that uncommon, even in full term babies. And indeed, any of us could have a couple of them. As the brain grows, the soft matter can grow around them and it is no biggie. The only reason we know they are there in premature babies is that they scan looking for a bleed.

I think they just don't take the time to write online about them.

I think also that if you are going through a difficult time or have long term issues to deal with, it is cathartic to talk about them and the internet gives us the opportunity to tell anyone who will read it! That catharsis isn't necessary for those who have an easy time of it.

I honestly wish someone (maybe I should) start a website for positive outcomes....because man oh man, there sure are enough negative sites. I was actually asked to LEAVE one preemie forum because I was posting in their words "too much positive" stuff and they were getting complaints from other moms/dads who posted there. I was shocked...so who's to say I am the first that has happened too? I doubt I am.

I think you should. Or maybe I should. The negativity is terrible. BNB at least has plenty of positive.

So I may never have know. I did bring it up with the specialist and I dont think he was too keen the fact i had seen the Grade, so it makes me wonder about the severity at all.

Haud on - you are perfectly entitled to know what grade the bleed was and what the potential outcome is. You need to stamp your feet and make em listen.

pmsl ay Foogirl.... god bless that poo!

We're waiting for one. 11 days and counting!

 

[AP]

pmsl ay Foogirl.... god bless that poo!

We're waiting for one. 11 days and counting!

*whispers* lactolase......

 

[Foogirl]

*whispers* lactolase......

*whispers back* suspected lactose intolerance - gonna try fresh orange juice tomorrow....

 

[AP]

oh fuck. Thought I was onto something there. lol

 

[nkbapbt]

You don't have any follow up appointments to let you know how she's developing?? That's so not fair. I mean how are you suppose to catch problems or issues if they arise?

Here we have access to OT's who come into our home every month to check on Lakai's progress. And we have our paed and follow up clinic at the hospital every 4-8 months. I would be a mess without them!

I also cannot believe they would not tell you what Grade of IVH she had! That's so crazy to me, even a Grade I sometimes results in issues... You would think that they would want you to be prepared right?

I think I will start a website. I planned too anyways, and I would love the help!

I think people need to be aware that there are other outcomes out there.

Foogirl - Thats good news then! I was told something different about cysts in the brain but maybe its very well dependent on location?

That's really good news about Abby!! She's such a little doll too!

 

[Foogirl]

Foogirl - Thats good news then! I was told something different about cysts in the brain but maybe its very well dependent on location?

That's really good news about Abby!! She's such a little doll too!

It depends on the number, the location and the size. Hers are relatively small in size and number and are outwith the ventricles so they apparently pose a lower risk.

They will follow up with her, but it won't be until she is over a year old that any effects would start to show. She does have a "regular" check up (every 4 months)

We've read all the information about the possible outcomes so we have a fair idea of what we might be facing, but just for shits and giggles, what were you told?

And cheers, she is kinda cute isn't she!!

 

[nkbapbt]

Actually nothing that different. Just that because cysts (they actually also called them "holes" in the brain) take up space, its considered a loss of brain matter/tissue so considered brain damage. But like I said that could be a result of location.

I think you would know far more about it. I was just told because it was a possible side effect of the bleed, something called Periventricular leukomalacia (brain cysts).

And basically the cyst "cave in" with surrounding brain tissue moving in to fill up the space. The cysts then "disappear," however the brain tissue that was destroyed in the area of the cyst is still gone (along with the functions controlled by that bit of brain tissue).

That ALL being said, this is what I was told when dealing with bleeds. So its probably not the same right?

Again I think you would be far more educated in this. Please do NOT get all worried over me saying this, because you will clearly know more than I do regarding Abby's health.

 

[Foogirl]

Again I think you would be far more educated in this. Please do NOT get all worried over me saying this, because you will clearly know more than I do regarding Abby's health.

I think we're actually talking about the same thing. The brain tissue will grow around the cysts as it needs to, but the majority of brain tissue is useless (for want of a better word!!) i.e we don't actually need all of it. So as long as the tissue lost isn't some of the useful stuff, we'll be fine.

But there is the potential that it is the stuff that affects hearing, eyesight or motor skills and this could lead to cerebral palsy.

And if that happens, we'll deal with it, but for now we just get on with it and put it to the back of our minds.

 

[nkbapbt]

Oh ok. I love your attitude! Seriously, I wish more preemie moms had the same (though I think everyone here does!). I think it's very easy to get caught up in "what if's" things that never happen...or might and then you miss out on the best parts!

Thanks for adding me by the way, I get to check out cutie pie Abby now! She has the best wardrobe!