Finleys story, would love some advice!!

[cherry22]

Hiya all,

This is very fresh so please bare with me!

On monday my DS was born at 32 weeks by emergancy c-section after me not feeling him move for over a day!
He had a hemaglobin level of 2 because of a massive fetal maternal hemorridge, its a miracle he is alive, he has had 2 blood transfusions and has liver and kidney failure but we have been told that they will hopefully re-generate themslves over time! We have also been told that he was starved of oxygen and we wont know how that has effected his brain, he's had 2 ultrasounds on his brain and so far they are clear of bright spots but they could show up after 2 weeks so we cant get our hopes up im not sure how to feel about that! theres 1 other baby on the ward with the same story and she has been told her daughter could have cerebral palsy which to be frank scares the living shit out of me!!
He has jaundice at the moment which we've been told is expected, We keep being told that he is doing remarkably well considering whats happend!

Our future is sooo rocky at the moment the unknown of how this has effected his brain is killing me i dont know enyone who has been through this to be able to say that their child is okay or not!

I feel like i should have done something sooner and then we wouldnt be going through this!

 

[netty]

hiya

I cant really help you i;m afraid but you may find more support in the preemie section.

 

[morri]

 

[Creative]

Mummies have this wonderful power that gives them the strength to cope with whatever comes their way.

 

[lisa35]

 

[Charliej101]

I had my LO at 29 weeks by ECS after lack of movement. She also had a fetal maternal hemorridge and her HB was also 2 (too low to be classed as blood so they are both very lucky).

She had 2 blood transfusions in the first 2 days and a 3rd after a few weeks, her HB remained low until after she was home.

She didnt have the other issues you mentioned though so cant advice on that.

She is now 10 months old, 8 corrected and doing great. She spent 8 weeks in hospital was ventilated for 2 days, CPAP for 8 then air with some oxygen on and off until she went home. She also had photopherapy for jaundice.

She is meeting her development milestones. Her only long term issue that we know of is hearing loss which is probably due to her being prem.

There are lots of babies in the prem section who have faced a very difficult start and come through it with little or no long term effects. There is also lots of support if you're LO does have long term effects.

Please dont feel guilty you did the right thing in recognising the lack of movements amd in ensuring you're LO came out in time and is now being given the best support for his growth and development

 

[AP]

Hi hun
We had Alex at 27 weeks, and she had a grade 4 ivh (brain bleed) probably again down to her early start and lack of oxygen.
Alex is going on 3 now- and we were warned of the scenarios that could happen. They havent. Alex doesn't have CP, although we lived completely expecting it. She can walk, run, climb and is a happy toddler. She does have trouble learning and can't talk, but this remains to be seen if its just her/prematurity and not the brain bleed + cyst she had back then. But - she gets the support she needs and is off to pre school nursery after the summer!

CP is a massive spectrum too-it could be something so little!

There are a few girls who have experience with brain and neurological issues due to prematurity - I can say they are all positive stories.

Google lied to me back then, I heard so many sad stories. I've I had known what I know now I'd never have wasted my first year with her freaking out! This place became my little haven!

 

[cherry22]

Thank you so much ladies!

Well to date he is doing amazingly! I keep hearing the docs say they have no neurological issues to date so im more than relieved at the moment!

He keeps going under the blue lights as the jaundice keeps creeping back up but thats expected.
His kidneys and liver are doing really well too, now we are trying to up his food so he can get stronger and stronger and come home!!

Im outrageously lucky to have him!

 

[AP]

he sounds like he's doing fabulously, and great to see you in the preemie section too

 

[Creative]

Thanks for the update. It's great to hear he's doing so well.

 

[cherry22]

Just wanted to update again!

Finleys been home a week now, So we are all adjusting to a new life in the house!!

Before he came out they did another ultra sound and found a bight spot on his brain which was around the inner bit, so they did a mri scan to see what the extent of the damage! we have'nt got the results yet, so im trying to deal with that aswell as looking after him so at the moment im just trying to put it to the back of my mind!

On the plus side he is feeding all the time so we managed to get the nasal tube out before we came home, ive nick named him the little bird because if the eyes are open he is looking for food!!!

 

[Gemble]

I'm so glad he seems to be doing well

My little girl wasn't premature but had a lot of complications during her birth, which resulted in her brain being starved of oxygen for 6 minutes. She was in NICU for 3 weeks and came home on oxygen. We were told we wouldn't know the extent of damage until she hits certain milestones. Cerebral palsy was their main concern! A year on and she's a perfect little girl. She walked by 11 months, talks fine and has hit every mile stone before she was expected too! She's gotta have check ups until she's 2 but so far all is looking good

Miracles can happen and I've got my fingers crossed that your little one will have a similar outcome. It's amazing how resilient these tiny little people are

Xxx

 

[Kissel]

Hiya all,

This is very fresh so please bare with me!

On monday my DS was born at 32 weeks by emergancy c-section after me not feeling him move for over a day!
He had a hemaglobin level of 2 because of a massive fetal maternal hemorridge, its a miracle he is alive, he has had 2 blood transfusions and has liver and kidney failure but we have been told that they will hopefully re-generate themslves over time! We have also been told that he was starved of oxygen and we wont know how that has effected his brain, he's had 2 ultrasounds on his brain and so far they are clear of bright spots but they could show up after 2 weeks so we cant get our hopes up im not sure how to feel about that! theres 1 other baby on the ward with the same story and she has been told her daughter could have cerebral palsy which to be frank scares the living shit out of me!!
He has jaundice at the moment which we've been told is expected, We keep being told that he is doing remarkably well considering whats happend!

Our future is sooo rocky at the moment the unknown of how this has effected his brain is killing me i dont know enyone who has been through this to be able to say that their child is okay or not!

I feel like i should have done something sooner and then we wouldnt be going through this!

I am so sorry for what has happened to your little one! I work with children who have developmental disabilities and behavior problems. I once worked with a little girl and I was told that during birth she had a traumatic brain injury. By the time I interacted with her around a year or two old you could not tell that there was any medical problem with that child AT ALL! The mother told me that doctors thought she may grow up with severe ******ation. Not so- she was cute, smart, and happy as could be! There are many little medical miracles that I have worked with. Seems that doctors try to prepare you for the worst case scenario. Stay strong for the little guy-he may surprise you!

 

[cherry22]

Thank you for all of your kind words!

I still havent heard from the hospital with an appointment for his MRI results which is a pain its like a unsettled feeling in my tummy but also im not sure i want to know because to me he is a normal baby right know! If its bad news it changes everything and im scared how i will cope with it!!
But know what if it is bad news reading through this thred really helps, you lot are strong woman and i hope i can cope with it as well as you have!

I pray everyday that he will be the medical miracle but he is here and thats a miracle how much more luck can i have!!
Ive been doing some reading on it all and the thing that is the most frustrating is how its just a waiting game to see if he gets his milestones, its like life is on hold in the twighlight zone!!

x

 

[Gemble]

Just wondering how things are going now?

Xxx