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.

Sending hugs, hope the Viagra does the job xxx

I hope the viagra works for Oliver. Sending hugs x

What an exhausting rollercoster you are on, hope Oliver has had a good few days and the drugs are helping. Sending you lots of positive vibes.

Oh and i think you are doing marvellously well.

Oliver has just had a moment. He's on 100% o2 just to keep his sats up above 80. He's having a chest xray to see if his lungs have collapsed. He may need to be reventilated. :'(
Think it's linked to the pulmonary hypertension.

Thinking of you. I hope this is just a little blip xx

No advice for you sorry shiv.

I have everything crossed for Oliver right now.

X

Oh Shiv, I'm so sorry Oliver is having a hard time at the moment. I'm still following your thread and have been rooting for you all. I have no advice, I'm sorry. I know you won't feel like it, but you are doing so well. Oliver is much bigger and stronger now, that is important to remember and hold on to. Fingers crossed for positive news x

Shit, SCBU is crap isn't it. Thinking of you & Hoping Oliver settles & stabilises. Maybe he needs a little time on the ventilator to rest if he has been working has.

Prayers & Hugs for you all x

Shit, Shiv. I don't know what to say. I just want you to know we're thinking of you, MrShiv & Oliver and really hoping this is just a temporary blip.

I hope Oliver is a bit better today x

Xx hope the little man has picked up, love to you all xx

Thinking of you today, Shiv, and hoping that Oliver's moment was just a blip. Huge hugs to you all.

Thinking of you, have been following this thread and hoping that things have settled down for Oliver. Take care.

He's stabilised and avoided reintubation by the skin of his teeth. Think it's all linked to the pulmonary hypertension. I hope the syfinadel starts working soon.
He's just been weighed and is 6lb 11oz. He has been started on dom peridone - just in case he has reflux. I have also asked that we cut back on the volume of feeds as sometimes I felt I was stuffing him when he just wasn't hungry and I think that can't help.
I'm really worried that we might not get him home but will be here forever and he will be a massive baby that can't function in the outside world.
On top of all this my maternity pay finishes at 6 months. I can get SMP for another 3 and then nothing for another 3. I will need to look at finances and possibly extend the mortgage or go interest only. :-(

Oh shiv.
I hope and pray he gets better soon x
Re feeding tubes they saved my little boys life

Its scary at first but after battling for so long it was amazing to see his skin glow as he was becoming hydrated. The first feed they put on was 15oz of diarolyte and I was crying my eyes out as he wouldn't even take that amount in a week never mind 12hours!!
It takes pressure of breathing while drinking too and ds has not had more than 2 chest infections since hes had it (over a year now)
X

Hi Supershiv1,

Just read your thread and wanted to say that I'm sorry you are going through this and that you are doing so so well. My son was born at 27 weeks at the end of March and came home 2 weeks after his due date, so I know something of what you are going through. His main issue was always his lungs (and he's on home oxygen now).
You must feel like you are on a never- ending roller coaster ( although that term used to really annoy me because the down bits are the best parts of a roller coaster) but try to hang on to the fact that Oliver is so much bigger and stronger than he was when he was born. 6lbs 11oz is an excellent weight considering his gestation (about 42 weeks?) and the fact that he is putting on weight well shows that he has spare energy. Time and weight gain is what he needs.
I remember one of the consultants telling me that everything comes together for premature babies at generally the same time and that was definitely the case for my son. The huge number of issues that used to get discussed at ward round just kind of resolved themselves as he got bigger and stronger.
Regarding your maternity pay etc, have you tried the Bliss helpline? They can be really helpful for financial support and looking into your options for you.
Will be thinking of you. Seriously well done though - it is so so bloody hard and Oliver is really lucky to have such a strong, positive mummy like you xx

Hi Shiv, glad to hear that Oliver has stabilise, little monkey, he's keeping you on your toes :)
Its amazing how sorting volume of feeds & reflux can have such a positive effect on the breathing, he's certainly piling on the pounds so no worries there.
He will be home, he wont be there forever its just hard to see the end when you've had such a set back
Talk to your HR dep or manager at work, when my maternity pay ended my employer continued to pay me my basic salary, when I queried they said the manager had used his discretion & didn't want us to worry about money - Having a good boss makes all the difference, give them a call you may be pleasantly surprised.

Could you not be signed off sick from the GP ,there must surely be grounds for stress if nothing else .good luck x

Re: pay, I'd be surprised if your employer didn't offer compassionate leave.

Thank God he has picked up:)

Please speak to work- I'm sure they would want to help. My friends LO was diagnosed with a life limiting illness ( nothing like your situation as you are on the up!!!!) - she didn't goback after maternity until her situation changed such that she could return. They paid her.

You shouldn't be needing to worry about money at such a time- but most of us would be in same boat re £££- you kind of plan for how you think it will turn out, don't you?

Make enquiries- it will hopefully make you feel like you are being proactive.

God bless- and a kiss for the little man x

shiv I really hope Oliver is having a better week. If work are not helpful re compassionate leave then maybe GP could help by signing you off?
Thinking of you and your dh- hope you are both holding up.

How is he doing x

Hi.
He's had a much better week. The hospital has agreed to trial him on high flow nasal cannula rather than cpap (they don't usually use high flow here) & he seems to like it. He's having 24 hours on high flow from this morning and then will introduce time off to low flow gradually tomorrow.
We have also spoken about more steroids - a longer dose, but I would want this to be a fall back and give him the opportunity to show us what he can do.
Always in the back of my mind is the pulmonary hypertension as I have read some really scary stuff about this, particularly as we get further and further onto our NICU stay (19 wks now).
I wish I could post photos on here as today he is dressed in proper boys clothes - some dungarees with a woofy dog on them.
Xx

Brilliant news x