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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:
mymatemax · 11/05/2013 10:28

Glad to hear he is still fighting & of course being very cute :) slowly slowly but he will get there. Thinking of you & of course Oliver x

CassieTheCockatoo · 11/05/2013 10:43

Also thinking of you and little Oliver....big hugs

SouthernComforts · 11/05/2013 11:26

Hi Supershiv, I just want to send you and Oliver hugs. He is a little fighter!!

My dd was born at 28 weeks but only weighed 1lb, she had all the usual problems and blood transfusions, brain bleeds etc. It was a long slog (as you know) but she is now a happy 3 year old.

Are there other parents on the NICU to talk to? That helped me.

Thinking of you xx

AWhistlingWoman · 12/05/2013 13:20

Glad to hear that Oliver is hanging on in there Supershiv (and, of course, being cute!)

It is a long slog and a bit of a roller coaster with all the ups and downs. Even reading phrases like 'bad gases' still sends a chill down my spine nearly five years later.

Hope that Oliver's feeds go up and that he gets off the ventilator again soon. My DD2 took seven weeks to get rid of the vent and I think that MichaelaS's little boy took a couple of weeks of more (we've commented on some of the same threads on the subject on the Bliss website!) So they can still get there even when it feels like time is standing still.

Hope that you are getting lots of support, it is such a terribly difficult experience and my heart goes out to you and to Oliver. Hoping for lots of good news to come for you both x

FannyFifer · 12/05/2013 13:28

Just seeing this thread now, wishing you and your darling boy well.

WouldBeHarrietVane · 12/05/2013 13:47

This reply has been deleted

Message withdrawn at poster's request.

Original poster
Supershiv1 · 14/05/2013 21:57

Hi all. NICU day 30.
Latest thing is desats and profound bradycardia.
Docs seem to be linking them to the brain bleeds/central nervous system which wouldn't sound good to me if they think they're neurological.
He had really bad gas this AM and there was talk of moving him to oscillation vent. He's had a transfusion and better gases since but being screened for infection again and apparently the episode this morning is the illest he has been and the speed of the deterioration is a massive concern.
I have joined the Bliss forum & will have a look/post when I get chance.

OP posts:
AprilFoolishness · 14/05/2013 22:00

Sending a virtual handhold this evening. Xx

PacificDogwood · 14/05/2013 22:01

Oh, Supershiv, the relentness seesaw of good news/bad news on NICU Sad.
Every day is good news.
He is hanging in there is good news.
There is something else they can do for him (oscillation vent) - good news.

Try and focus on that. And just be there and love him in the meantime.
Don't feel obliged to post. This thread is for YOUR support, not for us.
Thinking of you and Oliver. I hope you find support from BLISS.

VivaLeBeaver · 14/05/2013 22:02

Thinking of you and wishing you and Oliver well.

rosieposey · 14/05/2013 22:06

Just want you to know that you and baby Oliver are in my thoughts and prayers - from one Shiv to another.

mikkii · 14/05/2013 22:21

My thoughts and prayers are with you, Oliver, Daddy and the rest of your family. I don't have a story to inspire you, but I was blessed not to be in your position after a first admission at 24 weeks.

Miracles appen every day. Oliver can be one of those miracles.

dinkystinky · 15/05/2013 09:39

The posts on here are truly inspirational - Shiv, Oliver is every bit as tenacious and determined as these other wonderful little babies were (and by the sounds of it still are many years later) and am keeping everything crossed for you. Hope today is a better day for all 3 of you and that Oliver surprises the doctors yet again today x

RedKites · 15/05/2013 09:45

Thinking of and praying for you all.

mymatemax · 15/05/2013 19:39

Thinking & prating for you all.
DS2's gases were always given a boost by regular blood top ups, de-sats & brady's never really settled until his PDA was sorted but that had to wait until he was a little bit bigger.
We too were told his brady's could be Neuro related, I dont think they were, or if they were they resolved themself in time.
Day by day is all you can do, take care x

ChimeForChange · 15/05/2013 19:55

Hello Shiv,
Hoping today was better than yesterday for you.

Thinking of you and Oliver and daddy. Sending you lots of warm, happy wishes and thoughts. X x

Thinkingof4 · 15/05/2013 21:15

shiv hoping you and Oliver had a better day today x

Isitme1 · 16/05/2013 10:12

Shiv I hope Oliver is doing better today.
Like another poster said every new day is good news.
Remember to look after you too!
You need to keep your energy up to carry on being by Olivers side.

X
How is he doing?

Im from the july ante natal group. Just not managed to keep up with that lot lol.
X

CassieTheCockatoo · 16/05/2013 11:29

Also still thinking of you and little Oliver...

lia66 · 16/05/2013 11:54

Lurker here.

Thinking of you and your family Shiv. X

SugarMiceInTheRain · 16/05/2013 12:00

Thinking of little Oliver and of you and your family Shiv... x

ArabellaBeaumaris · 16/05/2013 12:02

Just saw this thread. Thinking of you.

mildred37 · 16/05/2013 13:25

De-lurking to let you know I'm thinking of you and Oliver. Here's to hoping that no news is good news. X

Mama1980 · 16/05/2013 20:41

Thinking Of you and Oliver xxx have also sent you a pm again.

TotallyEggFlipped · 16/05/2013 20:45

Thinking of you, mrshiv & Oliver. X