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.

Thanks for adding me ,the photos are lovely .

He has the most gorgeous smile.

So today we took Oliver home for a couple of hours. He met the smelly dog, had a feed and a snooze and then we took him back. Doing it again tomorrow!

Whoop whoop so pleased for you Shiv. Hope all goes smoothly for the next couple of weeks and Oliver is home for good v soon x

I saw the picture! Amazing stuff.

I remember reading this thread in the beginning with my breath held. So glad you have let us all share it all with you.

Well done Oliver!

Great news!! and Happy Halloween Little Oliver. Thinking of you as you make the next big steps to home. Well Done x

That's incredible shiv I'm so happy for you! What a journey you've had. Hope you are all home for good soon so you can start enjoying family life x

Amazing A very special day for you all x

how lovely xx so pleased for you :)

Heard tell of good news via the July thread. That's brilliant Shiv!

What does the smelly dog think?

Oooh im so glad hes doing well!!
Hope your home soon
X

Woo! I saw the photo of him at homr too. Congratulations! Hope he's home for good very soon x

Sorry, photo of him at home.

I've just read this whole thread and shiv your strength has amazed me. Hearing you reel off all his medical information and argue his corner with the doctors - what an incredible mother you are. From your first post I was desperately hoping for a happy ending for you - now I'm looking at your little man on your fb group and he is a perfect pudding. I can't imagine the love you feel, having fought so hard for him. I hope that he makes it home full time soon

How exciting, hope you are all home together very soon x

hooray

That's great! It must have been so emotional having him at home.

Hopefully home for good will be on the horizon very soon.

If you ever want a "chat" with an online stranger, please feel free to PM me. I had a home oxygen baby too (a 29-weeker who weighed in at 720g). Sometimes things about the neonatal experience hit you hard when you get baby home, and home oxygen can be an isolating experience. The door is always open! Xx

Yay Oliver!!

Oh Shiv, congratulations, what a momentous day xxxx

Thanks lotsofcheese for the chat offer.
Abz - smelly dog is very confused, especially the noises oliver makes. Oliver is not phased by smelly dog at all.

So since I last posted we had Oliver stay at home overnight last Saturday. Exciting but not much sleep for me. Different story for him - he slept 9-7, but I was waking up/sleeping with one eye open to make sure he was ok and his oxygen cannulas didn't pop out. We had an emergency sats monitor if we felt the need (we didn't).

Oliver is due to come home for good TOMORROW! !!!!!!
Am nervous and excited and terrified and and and waaaaah! It just feels like these past 7 months I've not dared breathe out and I'm still a little bit scared to.
He's coming home on .3l of o2 & lots of meds, but the scariest thing is he's coming home in the winter.
Oh sod it. I need to stop worrying and actually enjoy my beautiful beautiful baby boy.

Your support has been amazing and I can't quite believe what comfort I have found in strangers and how you have kept me going.
Many thanks, although this isn't the end, it's just the beginning xxx

I just saw your post on multiplemamas thread I didn't want to hijack, sorry I haven't been able to post much, it's been crazy here. I am so so thrilled to hear Oliver can come home tomorrow! What a little superstar X

Thats such brilliant news to hear. I had my baby boy close to oliver's due date and have been following your story since your first post. Hope you enjoy your little boy as much as I do mine x

What brilliant news Shiv you have all been amazing during the past 7 months, time to enjoy being at home as a family! Hope you remember what I said in my pm a few month back if you feel you need some support over the winter. As the saying goes today is the 1st day of the rest of your life! xxx

Just read your last post properly, my ds1 came home on O2 And masses of meds as he was waiting for a heart op. I found lists of everything helped massively, I could keep it clear and tell the nurses etc exactly what he had had and when, as my Brain was pretty much fried.
But as you say above all enjoy having him home, I swear I didn't put mine done for months after they came home
I'm thrilled for you and hope today goes smoothly x

Congratulations, Shiv - amazing, amazing news that Oliver is coming home today! Am so pleased for you. I second what everyone else has said and do pm me if you want I ask anything etc - my son was a 27 weeker, born a couple of weeks before Oliver. He came home oxygen and is still on .2l. I know what you mean about not getting much sleep at the beginning, but don't worry if you check him 100 times a day. If that makes you feel reassured, then do it.
I'm sure you have but make sure you get the paediatric cylinders from the O2 company. They are a lot smaller and easier for putting under the pram etc. but the nurses didn't mention them to us (?!) so we didn't have them for a few weeks.
Enjoy and well done! Xx

Hi Shiv and family,
So delighted for you!! I haven't been able to track him down on Facebook as I don't use it and am a bit of a technophobe!! but it sounds like he is doing brilliantly. Hope you get some time to really enjoy Oliver and spend normal time together doing all the things that other people take for granted. Here's to hoping for a fantastic Christmas together and a less stressful winter. Take care xxxx