Currently in NICU with 1lb 25wk very sick baby boy.

[Supershiv1]

How do I cope??
Have googled but I can't find comparable stories. All others involve babies twice the weight.
Am struggling to be sure I am doing the right thing putting my baby boy through all this.
He has grade 4 IVH & grade 2 so have no idea of quality of life at the end of all this.
Having said that he has fought for 10 days so far. The other parents in NICU have heavier babies and not the bleeds so feel like their problems are trivial compared to my baby boys.
I feel very weepy even though I am trying to put a brave face on.
How much more can my baby boy take? I can't hold him and I just want to tell him it will be ok but I don't know that it will.

How's Oliver doing shiv?

So we're back in Chester. Oliver coped itj the transfer well anf has already had his low flow turned down a notch to .4L
We tried him on demand feeding but he wasn't hitting his fluid targets so back to 3 hrly feeds for now.
The hardest thing is not living on site but he's smiling and babbling loads xx

Great news!

Wonderful news, hope the demand feedings is the next thing he masters. X

Smiling and babbling!

That's great news. So pleased to read your update. Go Oliver!

Fantastic!!! I know what you mean about not being on site, it must be very tiring, but such progress. Big hugs to Oliver!!!

That's great you're back in Chester, Shiv and fantastic to hear he's now on .4l - good boy! How are you coping with not being on site? Hope he gets the hang of demand feeding soon. Apologies if you've already said, but does he have an ng tube, or is he bottle/breast fed? Hope you and Mr Shiv are ok xx

It was always my dream to breastfeed (I'm lazy and thought it would be easier than sterilizing bottles) but we decided the stress for both oliver and myself was too much. He was exclusively on EBM until a few weeks ago. Now he's on Similac and hasn't had any feeds via tube for about 12 days.
We've had his audiology tests today and he has normal hearing in his left ear and mold hearing loss in his right. Am happy with that considering how long he's been on diuretics.
He's also been turned down to .3l of o2 & we took him to the hospital cafe in his pram with some portable oxygen and a portable sats monitor x

Hello again, you must have been so proud taking Oliver to the cafe. And great news re: reduction in oxygen, another step closer to home.

I hope you don't feel bad about not being able to BF. My 29-weeker, also oxygen dependant, wasn't able to breast feed, plus he needed more calories for growth so needed a special formula. It was almost a relief to stop expressing & I couldn't bear for him to struggle to feed. Decision made.

I hope you're finding some time for yourself?

Hi Shiv, that's great that you were able to take Oliver out in his pram. My DS came home on .3l, so hopefully you won't have too long to wait now.

Well done for expressing for so long. - that must be some kind of record! Oliver is making such good progress and no tube feeds for 12 days is brilliant. x

Lovely to read your latest updates, you have all come so far. Right little fighter you have got there, determined sort

If anyone would like to see pictures of Oliver I have created a closed Facebook group.
You have to search for Oliver's Army (exactly), it's the one with 100+ members nad I'll add you xx

I've often lurked on here, I am so pleased all is going well. How lovely that you got to take Oliver out in his pram for a bit.

I remember when dd2 had been poorly and in hospital-the trip to the hospital cafe seemed liked such a milestone! Being off the ward for a short time was amazing!

I've sent you a request shiv

Hi Shiv,
So pleased about the hearing test results, cafe trip and general all round great progress!! Fab news x

Argh! A discharge meeting has been arranged for November - seems so far away when all we are doing is waiting. He could be home!
I'm getting all impatient now. So close yet so far.

Shiv, that's great news!! but it must be frustrating. November is not that far away. Home for Bonfire night possibly?! Thinking of u all. So pleased.

Oh shiv! The pics are fantastic! He has grown so much.
He will be home in no time at all.

He looks amazing! So lovely and chubby and interested in the world. The photos make me want to shed a tear... Here's hoping it will only be a matter of days before you can take him home.

I've sent a request too, Shiv - looking forward to seeing the little guy. Discharge in November isn't very long to wait, although I found the last couple of weeks almost the hardest with DS because he seemed ready to come home. I'm guessing Oliver is coming home on oxygen? I'd try and get it all set up in your house as soon as you can, as waiting for the company to be able to deliver the concentrator delayed my DS coming home by a day or two. The end is in sight! Xx

Oh, Supershiv, somehow your thread fell off my list and I have not been on for aaaaaarges. Sorry.

I am so delighted to read about your Oliver's progress and how well he is doing . And the fact that you are v likely to have him home for Christmas - amazing.

So so well done, all of you x.

Its so great that he will be at home for his first Christmas ,congratulations . I will be sending a request on FB later if you don't mind x

Thanks for adding me, Shiv. He is gorgeous and he looks big! Lovely photos of him in his bumbo too. x