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Premature birth

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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:
Thinkingof4 · 12/06/2013 09:49

Hi shiv thinking of you and Oliver and hoping you get some more cuddles soon. You are doing an amazing job holding it together x

MightBeMad · 12/06/2013 12:42

Shiv, just to let you know that I am still rooting for Oliver, you and mr shiv. I hope you are having a better day today x

SlouchingPanda · 12/06/2013 21:23

Also popping over from the July thread to say that I'm thinking of you and your little family. Xx

PacificDogwood · 12/06/2013 21:28

Sending much strength to Oliver and his parents x.

TwentyTinyToes · 13/06/2013 07:58

Thinking of you all and hoping Oliver is getting stronger. Hope you get some lovely cuddles soon. X

Original poster
Supershiv1 · 15/06/2013 13:15

Hi, just a bit of an update really.
We were working towards oliver coming off ventilation on Monday (after a suspected infection was ruled out over the weekend) when suddenly his gases went crazy. This time his bicarbonate really dropped for no apparent reason resulting in metabolic acidosis (as opposed to respiratory acidosis which is what it normally is).
This resulted in putting all his pressuresband rates up on the ventilator to try and compensate - meaning almost back to square one on the ventilator settings.
Gases are still very up and down and haven't worked out why.
All this means that we are having to give a second course of steroids as he has been on the ventilator longer than expected and it's possible that any benefit ghe first lot of steroids gave will have been negated.
It's heart breaking.
On the plus side he is 34 weeks gestation today, he had his 2 month birthday on Thursday, he's tolerating 9ml an hour in BM feeds, he weighs 1.145g (2lb 8oz) and he had his first amazing cuddles with daddy on Thursday (I eventually got cuddles on tuesday).
As one of the doctors said to me, "Oliver obviously hasn't read the text book, or perhaps he has read it, eaten it and then spat it out."
Xx

OP posts:
Bullets · 15/06/2013 13:17

Thank you for the update, so pleased you've had cuddles now, stay strong, you've got a fighter xxx

PacificDogwood · 15/06/2013 13:28

Aww, thanks for the update and happy 2 month birthday to Oliver Smile.

He has more than doubled his birthweight.
He has coped with problem that, more than likely, would've killed him at the start (sorry to be blunt - just trying to point out how far he's come)
He is tolerating oral food.
His dad got his first cuddle [melts].

And you just better get used to that babies/children very rarely have read the textbooks, the awkwards sods Wink.

I spoke to the MW I work with yesterday, reminiscing about DS2's arrival and how I only got steroids once when his delivery was threatened at 25 weeks. He did not come along until 31+ weeks and there were no further steroids given to me or him. This has now changed - mums will be given steroids weekly if they are in danger of early delivery. Hey ho, things change.
Don't worry too much about him getting steroids again.

xx

MightBeMad · 15/06/2013 13:33

I love that quote from the doctor shiv. Keep on fighting Oliver and happy 2 month birthday!!

MumnGran · 15/06/2013 13:45

My heart goes out to you and your little family.
He is obviously a fighter, and has you fighting right there beside him.
Smile

CelticPromise · 16/06/2013 16:59

Happy two months Oliver. What a stressful week for all of you. Fingers crossed for lots of peaceful progress this week.

Cheeseandbread · 18/06/2013 08:44

Just popping on fron July thread to say you Oliver and Mr Shiv are still in my thoughts and prayers. Yea for the cuddles. He is a little fighter! X

Mama1980 · 18/06/2013 08:53

Just popping by to say yay and well done Oliver! Sorry to hear he s still having problems with the vent but its great that he's gaining weight and tolerating feeds so well it will all give him strength. I'm still thinking of you and cheering Oliver o.
I was where you are in January, now my boy is laying in his baby gym watching his brother roll sponge balls at him and giggling! Stay positive xxx

clabsyqueen · 18/06/2013 18:54

I too have my fingers crossed for an uneventful week for you. It is certainly needed and deserved.

Original poster
Supershiv1 · 19/06/2013 09:38

Not medical, bur a charity called pop n grow have used Oliver's picture on their facebook page. He has blue mittens on and has a giraffe in his incubator.

OP posts:
MumnGran · 19/06/2013 09:58

So pleased to hear from you.
How is Oliver doing?

TotallyEggFlipped · 19/06/2013 11:36

Oliver showed star potential from the beginning. I can't believe he's already done his first modelling job!

samsmother · 19/06/2013 22:53

Oh Super, just had a look, he's a beauty, well done and stay positive :-) been following thread but have yet to post x

PacificDogwood · 20/06/2013 08:38

Aw, Supershiv, a superstar in the making you've got there Smile.

JoEW · 20/06/2013 13:37

Just went on to Facebook to have a look at the little guy! Shiv, he's adorable, lovely eyes! I hope Oliver had a better week this week, he's a little star and so brave.

Original poster
Supershiv1 · 21/06/2013 21:12

Where is my light at the end of the tunnel?
The steroids don't seem to be having any effect, even though the doc's have extended b them outside the DART regime.
Oliver has a massive hernia and he had to be resuscitated today whilst I was changing his nappy ....

OP posts:
PacificDogwood · 21/06/2013 21:55

Oh, Shiv, so sorry to hear that Sad - it is so tough.
Nobody can promise you that light at the end of the tunnel, but you must try and keep going. For him. For Oliver.
Big hug to you.
Much love and strength to all of you x.

CelticPromise · 21/06/2013 22:00

Oh Shiv. Huge hugs and many thoughts and prayers to you and Oliver. My DS was resuscitated more than once and I remember that terrifying, helpless feeling. Much love to you both.

mymatemax · 21/06/2013 22:27

Supershiv, it is so so hard, thoughts & prayers for you all. I hope you hard a stern word with your beautiful boy for playing up like that. x

thomasmad · 21/06/2013 23:02

Hi, thinking of you all. It is really hard. Read somewhere that getting a baby home form SCBU was like "winning the lottery that noone would buy a ticket for". We had twins at 28wks and ended up in hospital a fair way from home so very stressful but nothing compared to others.
Try to take comfort in the support of friends, family and even strangers!! Everyone is rooting for little Oliver. Take care. x

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