Today was my due date!

[cherry22]

And im really struggling!!!!!!!

Its starting to hit home that my little Fin is'nt going to be the miracle baby that comes out of this with no brain damage! Still no appointment to get his results yet and its like waiting for a death centence!!

I feel robbed of my pregnancy and such a failure!

The health visitor came round yesterday and i couldnt stop crying its the first time ive cried since the day i sore him sat in the incubator, she said i have to go see the doctor!

Im just so empty.

 

[AP]

I can't believe they havent given you your results yet Is there anyone you can chase up? That's outrageous, we were told almost right away.
Even if there is any issues, there's no reason to say he wont be fine

You are NOT a failure! You are one bloody courageous mummy who has done a journey no mummy should have - and you've made it!

 

[cherry22]

He had and an MRI scan the week before he came home, they said that the results get sent to a specalist in london and it would be 2 weeks orignonally, the we were told we would get an appointment with the neuro specailist in 6-8 weeks and we still have'nt had eny letters!

Only a dietions appointment in August and a Development one in september!

I dont know who to ring to chase it up! I just feel like im in limbo and i want to know good or bad what his future is!!
I cant help feeling really sorry fo myself today! If there was a black hole id be the first to jump in it!!
I know everyone say's im dealing with i so well and im so brave bt im not on the outside im smiling and on the inside i falling apart! This has truely broken me and who i'am!

 

[AP]

It's the waiting that will be making you feel even worse, and anxious

I would ring where he got the MRI, or call your GP, who should be able to see some kind of documentation from the hospital to say that he was there for the MRI, and take it from there.

 

[ermm23a]

Thinking about you. Hope you can get some answers soon. The waiting is the hardest part.

 

[lil_mama_415]

Just so ya know miracles do happen neurologically my mom has Multiple Sclerosis and it affects the brain and how she moves she went from a wheel chair barely being able to talk to now she only has one leg brace and walks and talks fine this was within 2 years so dont be down science only goes so far then comes god

 

[cherry22]

His appointment came through today for the 19th july! I feel sick, im terrified now!!

 

[AP]

Have they given you any idea of whats going on?

 

[cherry22]

Not at all! Just got one of the nhs blue appointment letters through!! I had 1 hours sleep last night!!

 

[nickiem]

my daughter was born in march at 29 weeks. They picked up cysts on her brain on uss and we got MRI results last week confirming Peri ventricular Leukamalcia on both sides of her brain, more severe on left they have prepared us for cerebal palsy. She is now 14weeks actual age (3 weeks corrected) and breast feeds really well and lifts her head.

Our MRI results also went to a specialist in London before we got results. I know exactly how you feel I was sick with worry from the moment I found out she had problems. If you want to chat feel free hun.

Nickie xx

 

[AP]

Nickie and welcome to the forum x

 

[cherry22]

Hi nikki,

Thank you for sharing what your going through at the moment!

In one way theres part of that doesnt want to know then nothing will change, but once i get used to the outcome ill get on with life!!

How are you feeling now you know? Has finding out changed how you feel about your LO? I already feel like i greiving for my little boys future and i havent got the results yet.
Ive been so nasty to my husband, pushing him away! i get people asking how iam and all i can do is lie and say 'im fine'!
Im scared our marriage wont last through this!

 

[AP]

Oh cherry The one thing I would advise is that you take all the "what ifs" with a pinch of salt. Doctors can tell you the scenarios that could happen, but it doesn't mean it will. I spent Alex's first year worrying about what was going to happen after her brain bleed. If only I had known what things would be like now! I would have just enjoyed her as a baby.
You cant get the baby years back so try to enjoy them as best you can!

 

[25weeker]

Agree totally with Atomicpink I know it's difficult but try not too let it stress you too much.

I spent the first year in a state of panic worrying what Holly's future would be like and it's only now I am actually really starting to fully enjoy her.

Remember doctors will give worst case scenario's which some people don't like but I preferred having a complete picture even though worst case didn't happen.

Good luck xx

 

[PleaseBaby]

The smae as atomicpink and 25weeker, I'm only just starting to relax and amelias nearly 15 months. She had a grade 3 and 4 Ivh so we were expectign the worst and the doctors told us shed be severely brain damaged. There is however absolutely nothing wrong with her at all, miracles can happen x

 

[nickiem]

Sorry its taken ages to reply.

Im still really struggling with the diagnosis. My husband is burying his head in the sand because at the moment there isnt an obvious problem. /having said that ive started to notice little things with foot tremours and still no smiles.

I hope you get your MRI results soon. If its PVL there is a fab support group on fb. message me if you would like link.

xxx