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Premature birth

Connect with others and find premature birth support.

Original poster

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

674 replies

Supershiv1 · 23/04/2013 10:57

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.

OP posts:
MiniPopsMum2012 · 22/06/2013 07:00

I've just read this thread from start to finish; you are an amazingly strong mummy and I am sending all my positive thoughts love and hugs your way and hope that little Oliver continues to eat up that text book and spit it back out and the drs Flowers. Premmies are tough little things, and your LO sounds like an amazing little boy. I've just seen him on the pop & grow FB page and he's absolutely beautiful. I hope he starts to pick up again very soon, stay strong. x

NellysKnickers · 22/06/2013 07:20

Hi Shiv, have been following your story, ds1 was NICU, but not quite as tiny or as prem as your little Oliver, but he's a tall strong 8 year old now. Keep strong and positive sweetheart.

Original poster
Supershiv1 · 22/06/2013 08:42

In good news he did manage the next nappy without a dicky fit x

OP posts:
CelticPromise · 22/06/2013 08:48

Well done Oliver. Tiny steps. I hope for a peaceful healing weekend for you both.

Isitme1 · 22/06/2013 10:32

Glad the nappy change went smoothly.
Bless him. Hes adorable. Love the picture
Hope he has more positive steps
X

dinkystinky · 22/06/2013 20:37

Shiv - hugs and love to you all. Glad you did the later nappy change with no drama (Oliver is clearly going to be a star of stage and screen when he gets older!) and hope you have a good, peaceful and stable weekend, and all 3 of you get lots of rest this weekend x

Original poster
Supershiv1 · 23/06/2013 09:16

I asked the question no one wants to ask at rounds yesterday and although we've been told before (a while ago) it's still not what you want to hear.
So i asked 'where do we go to next?' (In respect of getting Oliver off the ventilator and the fact he doesn't appear to be responding to the steroids this time).
The consultant said something along the lines of 'we need to see if he declares himself unfit to survive'.
I have been beside myself. It's always been made clear that his survival odds were low, but I can't give up hope and I am hoping the longer he hangs on the better the outcome - but that's cruel in itself as you get more attached.
I feel like I've been punched.
Does anybody know anything about ventilator dependent babies???

OP posts:
katydid02 · 23/06/2013 09:22

Hugs. I don't know anything at all about premature babies but I wanted to say I am thinking of you and Oliver.

CelticPromise · 23/06/2013 10:06

Oh Shiv that is very very hard. I'm sorry you're going through this. Could you ask for a proper meeting with consultant so you fully understand all the options and what they are prepared to try? Maybe try to speak to whoever you trust the most. Keep talking to him, singing to him, pumping for him, it all helps. Hoping very much that he turns a corner soon.

Are you on the Bliss message boards at all? They can be helpful although sometimes a bit quiet.

Original poster
Supershiv1 · 23/06/2013 16:07

Hi celtic. Hubby spoke to consultant who said we were a way off that yet but they lookat llittle markers like his bradys and desats. He has positive markers like food tolerance and weight gain too. I suppose they can't give you false hope and the consultant reapects us for asking a very difficult question.
I have looked at the Bliss boards, but as you say they are very quiet.
I might be able to have some cuddles if his last gas was good so am going to get changed and toddle off and see x

OP posts:
VinegarDrinker · 23/06/2013 16:16

Just to say we are thinking of you. Sounds incredibly tough. Respect for asking the tough questions. X

MABS · 23/06/2013 16:32

really thinking of you x

CelticPromise · 23/06/2013 17:27

Hope you have had a cuddle. I'm sure that's good for both of you.

mymatemax · 23/06/2013 17:35

supershiv, the consultants are very good at giving worse case senario. it really is when you question & probe that you get a balanced opinion.
Keep doing exactly what you are doing & the docs will keep doing everything they can for as long as Oliver keeps fighting.
Weight gain is so important & a big step in the right direction.

SundaySunshine · 24/06/2013 20:53

Shiv just popping in to say hi, give you a virtual hug, and send strong vibes to little Oliver, what a star he is. I just can't imagine having to ask those difficult questions and your braveness and strength is inspiring. I'm glad on closer questioning the DR was a little more reassuring . Hope you managed to get more cuddles x

Mama1980 · 25/06/2013 08:01

Hi shiv just letting you know that I'm still thinking do you and cheering Oliver on. I have everything crossed That he will gain enough strength soon to be able to come off the vent. Sending strength and hugs x

MiaowTheCat · 25/06/2013 10:10

This reply has been deleted

Message withdrawn at poster's request.

PacificDogwood · 25/06/2013 17:53

Oh, Shiv, it is just so unfair and horrible to even feel like there is a need to ask the Really Difficult Question - my heart goes out to you and your DH.

I agree that drs tend to err on the side of gloomy. The general feeling is that making reassuring promises that, let's face it, are well beyond any HCP's ken to keep, is crueller than painting a pessimistic picture that may be turn out not to be true.

I am not sure where I stand on this tbh.
I think where there's Life, there surely is Hope.

Babysteps and one day/hour/feed/nappy change at a time.
Thinking of you and your tenacious little boy often x.

Isitme1 · 27/06/2013 09:27

I hope hes doing better today and baby Oliver is in my prayers x

Mama1980 · 27/06/2013 10:47

Thinking of you and Oliver xxx

Original poster
Supershiv1 · 27/06/2013 11:29

Ok it's kind of make or break.
He had really good gases yesterday and his pressures are down. However he's just had a really shitty gas, but they think it mighy be secretions on the end of his tube. The decision is whether to do a tube change or risk Bipap.
They are in conflab as I write...

OP posts:
McKTastic · 27/06/2013 11:42

Have lurked with you from the beginning. Just wanted to say am thinking of you & yours.

Mama1980 · 27/06/2013 12:06

I'm here for a hand hold shiv ((holds tight)) I have my fingers crossed, the worst part for me was the drs conflabs i felt so helpless. We're all rooting for you Oliver xxx

Original poster
Supershiv1 · 27/06/2013 13:10

Tube change. He started bradying so forced their hand. Pressures now back up by 2 to 21, but I know he can do this x

OP posts:
Mama1980 · 27/06/2013 13:16

He can just look at how far he's come already. Food toleration and weight gains are great hopefully he still just needs some more time. Have they said what the next step is?
Thinking of you all x