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.

[Supershiv1]

Michaela your situation is possibly the most similar scenario I have read. Thank you soooo much for sharing.
Where are you based? I am in Arrowe Park on the Wirral staying in the Ronald Mcdonald housing.
Oliver came off the jaundice lamp today, took off his shades and opened his eyes for the first time (that we saw).
He is the elder statesman of the NICU at 12 days, everyone else has graduated to nursery or HD.

[JugglingFromHereToThere]

@ elder statesman - well done Oliver - and you !

[MichaelaS]

I'm
Glad it helps you. I know lots of other very early prems too, the majority are fine but with a few issues like physical problems or late speech or sensory wobbles. I know very few who have the sort of life I feared my son might end up with, I.e. so badly damaged that participation in school, playing with friends etc is not possible. :-)

We are in East London, the Bliss group I run is in Whitechapel. I know the Bliss volunteer coordinator for Manchester and she is lovely.

One other thing you might not know about - Bliss have a helpline where you can call to talk through your worries or just to speak to someone who understands what it's like. Number is in their website.

Take one day at a time, there will be ups and downs and lots of babies will go home before you do, but chances are that eventually your son will come home, and one day you will give him hell for putting you through all this worry! Xxx

[Mandy21]

OP I'm in Manchester and I know there are a few groups scattered in the NW - I've been involved with BLISS ever since I had my twins (support group) and latterly as a fund raiser and everyone is really lovely and I'm sure you'll get some support. I didn't find BLISS till we'd left hospital but wish I had - I didn't think anyone who hadn't been through prematurity / NICU could possibly understand what I was going through - but the people at BLISS definitely understand. I met quite a few BLISS campaigners / families on Sunday and there are definitely lots of positive stories for babies like Oliver.

[VivaLeBeaver]

Oliver sounds like a fighter. Thinking of you.

[Supershiv1]

Just thought I'd update you.
I held Oliver for the first time today (with nurses help as on ventilator).
2 wks ago I was in labour!
Fingers crossed x

[AitchTwoOhOneTwo]

massively crossed. keep on, both of you.

[MrsBungle]

How brilliant you got to give him a cuddle! Lots of good wishes from me. xx

[lia66]

That's a lovely update to read shiv :-)

Glad to see little Oliver is a fighter x

[PacificDogwood]

Oh, the first cuddle - how lovely !
Oliver and you are in this together and my fingers are also v crossed for you.

[ipswichwitch]

So glad to hear you got your first cuddle, will be the first of many i'm sure. I'm keeping everything crossed for you.

[JugglingFromHereToThere]

Ah, that's made my day How lovely !

[AWhistlingWoman]

Yay! So glad that you had a cuddle with Oliver!

[HDEE]

My twins were born at 23 weeks and weighed a pound each. It's amazing how strong these tiny babies can be. The brain bleeds are worrying but the brains of developing babies are amazing things and they often do very, very well.

My twins are three now and perfect. We kept a blog while they were small and now and again I go back and reread it.

My best advice is to remember that just because your baby is in hospital, he is still YOUR baby. You know him better than anyone and are his voice. Don't be afraid to speak up for him, or touch him when you want, or be firm about needing kangaroo care. Personally I preferred not to unsettle my babies while ventilated, but its your choice and you should always make your feelings known.

[Supershiv1]

Thanks HDEE. Good to hear of others with similar weight doing well.
Like you I prefer not to unsettle him whilst ventilated, but he'd had a stable day yesterday and he's now 2 wks old.
Once he is stronger I will be kangarooing all over the place (as will DH) as I know it's good for recovery/development.
Changed his nappy yesterday and he promptly bradied!

[JugglingFromHereToThere]

Sounds quite exciting to be looking forward to more kangerooing shiv. I always thought that sounded a great way to go with things (but I don't know much about it all) I think it would be the sort of thing I'd go for though if it was offered as an option. (We did lots of co-sleeping and that sort of thing with ours throughout baby and toddler years)
Kangerooing all over the place sounds quite bouncy .... like Kanga ?
HDEE's advice sounds great. I think the more "at home" you can make yourself in a hospital the better !

[MichaelaS]

Hi Supershiv - how fantastic that you got to hold Oliver!! Kangaroo care is fantastic once he is stable enough - much easier once they are on CPAP but it is possible on a vent. Completely agree with HDEE about remembering he is your baby and you are allowed to state your concerns, preferences and ask and ask until you're happy you understand his medical care (or as much of it as you want to understand).

I hope Oliver has a stable couple of weeks and grows, matures and is able to take little steps forward. Look after yourself Shiv!

[Quodlibet]

OP I don't know if you've seen this blog: www.arthureccles.blogspot.co.uk/?m=1. I'm not sure how similar your situations are but he was a very fragile little boy born early who I think had a couple of bleeds but who is now doing really well.

[ArthursDaddy]

Hello. I found this thread as it was linked to our blog:
www.arthureccles.blogspot.co.uk I'm Arthur's Dad (sorry I do know this is Mumsnet).

Arthur was born at 26 weeks and also had a Grade 4 IVH on one side and a Grade 3 on the other. We too had some very difficult and unpleasant conversations about whether they should continue. Arthur is now a perfectly well two year old. Remarkably, astonishingly, wonderfully normal. Amy and I are both doctors, we understand why you're being told what you're being told. But the absence of hope from the discussions is utterly horrid.

Oliver isn't Arthur. I don't know how he'll do and I wish him all the strength in the world. Arthur had a rough course and did well. If you think it might help do look at the early posts from Jan and Feb 2011. We still can't re-read them without crying, even two years later.

My thoughts and hopes are with you. Have strength and get all the support you can because you're on a rollercoaster without brakes, and you can't get off. All the best.

[PacificDogwood]

Aw, ArthursDaddy, I am not the OP (obviously), but it is so kind of you to take the time to post this.

And MN is 'by parents for parents'. Welcome !
You sound like you have a remarkable little boy.

My preemie is now 9yo and built like the proverbial outhouse, but I will now go and have a look at your blog if you don't mind.

Super, I have been thinking of you and Oliver. Sending much love and strength.

[Supershiv1]

Arthursdaddy
Thank you for taking the time to respond. I started reading some of Arthur's blog last night. It's something I would like to do with Oliver (otherwise every day is groundhog day and you loose the small achievements). I have started updating facebook with photos and sporadic updates but have no wifi and doing it all via phone.
Oliver also seems to be a fairly unique case in terms of his weight and the fact he was delivered at home and had to be resuscitated by his dad (meaning core temp unstable, no steroids for me and serious bruising for Oliver as natural birth).
Stories like this do give me hope, so thank you for sharing. It's also good to talk to others who have been through similar experiences, as I didn't know this world existed (& how heart breaking it was) until 3 wks ago.
I too hope bey

[Supershiv1]

I too hope beyond hope that Oliver will not only survive (still no increased odds from day 1 I.e. under 40% survival chance) but be a miracle in not letting the brain bleeds mean anything too debilitating.
I would message you my Facebook name if I could message you on here?
Thank you again for sharing.

[mymatemax]

Supershiv, congratulations, the first cuddles are priceless. My ds was born at 28 wks but had a rough time in SCBU with all the usual complications.
My ds2 does have long term disabilities but that is OK, he is still first & foremost our gorgeous DS2 with his own character, personality, like & dislikes who argues with his brother.
It is just as likely that your beautiful Oliver will grow into a happy healthy little boy with no disabilities but if he does have any war wounds to show from his early arrival life can be just as good. Take care x

[Gurke]

Hi OP - just been thinking about you and Oliver. How are you both today?

[Supershiv1]

Hi. Oliver is 4 wks old today.
In the past week he has been treated for infection, went on Bipap, went back onto ventilation, had a collapsed lobe in his lung, had feeds increased to 1ml an hour then back down to 0.5ml an hour, had blood transfusions, good gases and bad gases, brain bleeds re categorised to 4&4, then 4&3 (from 4&2).
Basically I wouldn't wish this on anyone, but little man is still here & very cute.
Need him to increase his feeds and try to get off the ventilator again before we start talking steroids.
Thanks for asking.