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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:
clucky80 · 31/07/2013 20:45

Brilliant news, so pleased to see this. Take care x

beatofthedrum · 31/07/2013 21:07

You are both incredible Shiv, you and your little boy xxx

lia66 · 01/08/2013 11:58

inspirational storythrilled little Oliver is doing so well x

Original poster
Supershiv1 · 02/08/2013 09:16

The scan showed that his bowel is as it should be - yay!
He's now off cpap 3 x 1.5 hrs a day on .5 oxygen on the nasal cannula.
He put on more weight and is now half an ounce off 5lb. Diuretics are being optimised so hopefully he pees out some of the fluid and his o2 requirements come down again (reassuring to read your comment mymatemax).
He was saturating well around 30% on cpap, but that's gone up to 43% with the weight gain and end of the steroids.

OP posts:
TotallyEggFlipped · 02/08/2013 09:59

Great scan news, shiv! Go Oliver!

TwentyTinyToes · 02/08/2013 10:01

Go Oliver!! What a star. X

bemybebe · 02/08/2013 10:09

Go Oliver! What a journey, good luck to all your family Super!

Wereonourway · 02/08/2013 10:14

Wow, excellent progress!

So pleased for you Shiv. I've got a tear in my eye.

What a strong little boy Oliver must be, and you too.

When ds was in nicu a consultant told me all prem babies have a corner to turn and it sounds like Oliver has turned it.

Great news

thomasmad · 02/08/2013 20:55

Great news!! so pleased for you.

xigris · 02/08/2013 20:58

Bloody fantastic! So pleased for all of you xx

IKnewHouseworkWasDangerous · 02/08/2013 21:06

This is the first tine I have read this thread. What an amazing little fighter you have there.

KateCroydon · 02/08/2013 21:45

Happy dance for Oliver's bowels.

Picture? Of Oliver, not the bowels.

Original poster
Supershiv1 · 03/08/2013 00:14

I can't add picture on here, but if you search pop n grow on facebook he is the baby with the blue mittens. Xx

OP posts:
Original poster
Supershiv1 · 03/08/2013 00:15

Ooooh also he had a go on his first bottle today, he was only supposed to have 5ml but he did so well we gave him 10ml - naughty mummy and daddy x

OP posts:
KateCroydon · 03/08/2013 05:16

Aaaah. He is very cute. He must look very different now though? And yay to 10ml.

Wereonourway · 03/08/2013 08:03

He is beautiful Shiv

xigris · 03/08/2013 19:30

He is super cute! Congratulations!

LaRosaBella · 04/08/2013 22:37

Awww he is so amazing!

cheekbyjowl · 05/08/2013 21:49

I was just wondering how oliver.was doing and found this thread. an answered prayer. well done family super Grin

Cheeseandbread · 06/08/2013 05:57

Such good news that Oliver is doing so well! Xx

Poppet45 · 06/08/2013 17:15

Another longtime lurker herdoing a happy dance for Oliver. Also just read about the diuretics. Are they chlorothiazide or spironolactone? Dd who was a 27 weeker had them for about a month but was readmitted a couple of weeks after discharge with an awful rash spreading up her face. She was put in isolation with a suspected staph a infection but it was an acute zinc deficiency caused by the diuretics, her prematurity and because she was being exclusively breastfed. Took our hosp two scary weeks to work it out but as soon as she was put on zinc it faded away. Its rare but keep a wether eye on anything like it. Hugs to you all x x

Original poster
Supershiv1 · 07/08/2013 00:28

Pants pants pants.
Oliver's o2 requirement on cpap is now around 65%.
He seems really colicky and unsettled so we've started him on infacol.
He weighs 5lb 8oz and is having 2 sessions off cpap on nasal cannula but seems to be tired. His o2 requirement on the canula has gone up to 1 litre. We won't be transferred back to our home hospital until he can do 4 hrs off comfortably, but I'm really concerned about his increased o2 requirements.........He's had a couple of bad desats where he has gone grey in my arms and seems to take ages to come up.
Argh!!
He's 41+3.

OP posts:
Original poster
Supershiv1 · 07/08/2013 00:30

Diuretics-he's on spiro and fruisimide (sp?)..

OP posts:
EugenesAxe · 07/08/2013 06:55

What an amazing history of Oliver's start in life - I only just saw the thread. I'm sorry to hear of your most recent setback and hope it's sorted soon.

Really good luck to Oliver and best wishes to you & your husband.

mymatemax · 07/08/2013 20:25

Is he on Gavison or any reflux meds.
DS2's O2 really didn't stabilise until his reflux was under control silent reflux in to the lungs is a nightmare for prem babies.
It was the most simple thing to treat but it was a nurse that sussed it not a doctor in DS2's case.
& it wasn't directly after feeding either, it depended on his position as to how his feed was absorbed.

Its shit when it feels like 1 step forward 2 steps back, hang in there, he will get there.

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