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.

Excellent news Shiv!! another one here following Oliver's progress and hoping that all was well for you. Another step closer to home. Do remember to try to rest if you can. I know it is very, very hard. Really pleased for you.

Happy 100 days, Oliver!

Well done Oliver, fantastic news!!! HDU amazing!

Don't worry about brain probs just yet, so much developmentally is about feeling loved at this age, cuddles and talking to him and still touch are giving his brain lots of encouragement to grow through the damage and fix itself. Specific therapies can target particular problems if any emerge eg physio for CP, speech and language, brushing and deep tissue pressure for sensory issues.

You are on the home straight now... Time off CPAP will come, more growth and in a few weeks or a couple of months it will be home time! And all that amazing milk will keep him healthy and germ free over his first winter, which will protect those growing lungs. Well done Oliver and well done his amazing mummy!

Well done Oliver and for you.

Well done Oliver! Sounds like he is doing really well xx

How are things in Team Shiv? Congratulations on 100 days

Well done little Oliver! All over the world people are cheering for you right now.

Hello. Just come upstairs from cuddling Oliver whilst he had an hour off CPAP on nasal cannulas
He's having 3 x 1 hour off a day on .3 litres of oxygen. This goes up to 4 x 1 hours tomorrow.
His steroids were finished on Sunday and we've noticed his oxygen requirements on cpap have increased from 28% to 38%, but we can cope with that.
He now weighs 4lb 4oz (1.945kg).
He is also looking for stimulation when awake as he's term and my due date was tomorrow.
Thank you for seeing me through the dark days. It's not over yet, but I can see my light at the end of the tunnel x

Its so good to hear you updates shiv

Keep up the good work Oliver!

Go Oliver! Delighted to read your latest updates. You sound like a lovely mum. X

Thanks for the update, shiv. I often find myself wondering how Oliver is doing at the most random times. It's great to hear he & you are doing well.

Oh shiv. It must be quite an emotional time for you this week, I know you and I share other friends off here too.

Oliver is doing so well and you are being so strong. It's lovely to see your positive updates. Look after yourself x

Just seen your thread OP and wanted to say that a dear friend of mine also had a 25 weeker who had bleeds, lots of surgery and a shunt and is now a strapping bilingual 8 year old!

Oliver cuddles!

Well done Oliver and Team Shiv!!,
It sounds like you are all doing well and before you know it, they may be suggesting "home" which will be brilliant and you will think "am I ready, do I want to leave?!!". I kept all the cards our boys had from SCBU. The two batches!! the first tentative "thinking of you/ praying for you" ones, and then the "You're home ones"!!! They still make me smile and have a few tears. But I wish I had kept a diary. You will have this thread to look back on... and I finally got the balloon and flowers I wanted when the boys made it home! It is the silly things that get to you - I was on the maternity ward once our boys were transferred and everyone had balloons and flowers and I had worried texts and "thinking of you" cards. Well done Oliver, Well done Oliver's family .

Well done such positive steps. I am due next week and have been thinking a lot about what you must be going through.

Great to hear the positive update Shiv well done Oliver!! Xxx

Well done!!

Nearly 2kg! Fantastic stuff! You never fail to amaze me with your resilience - Oliver is a lucky boy to have such a strong mum and dad.

Hope you are coping okay through the weekend, to Oliver for his due date.

Hi all. Due date was fine. The royal birth was the one that got me as I always thought early on that Kate and I were hitting so many milestones together.
But over that now.
Oliver has again put on weight and is 4lb 12oz. He put on nearly a lb in a week - which although good is a little worrying.
He's having a groin scan today as his man bits look a bit swollen again. We're hoping it's just excess fluid (which might also explain the increase in o2) that can be treated with diuretics. Please God it's not the return of the hernia. We were told that there would be a possibility it could come back, but I didn't think so soon.
He had his first bath yesterday and promptly poohed in the water. And he is having a go on a bouncy chair when he's awake xx

Well done Oliver!! DS2 o2 needs always went up with a big weight gain, it was almost as if his body was growing quicker than his lungs were developing/recovering.
I hope Oliver likes the bouncy chair, its lovely when you get to do some of the normal baby things, even if its with tubes & wires attached.

Take care of yourself, try to get sleep & rest when you can & crying is normal & good. All the weeks & months of stress & trauma HAS to come out & will keep coming out for a while yet.

Hi Oliver and Shiv,
Good progress, hope that the diuretics work.What a milestone! first bath. Brilliant news. I second what mymatemax says about everything catching up with you, so take care.

Lovely news to read supershiv. You've all come a long long way since the start of this thread. I'm so pleased for you!