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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:
TotallyEggFlipped · 25/08/2013 14:06

Glad you've had a better week, shiv.

mymatemax · 25/08/2013 19:24

glad he's had a better week. Love the sound of the proper big boy clothes :)

ClenchingPanda · 26/08/2013 06:22

Was just wondering how you and Oliver were getting on, so glad to read your latest update. Good luck with the trial of nasal cannulae - sounds like progress so fingers firmly crossed that his oxygen requirements continue to head in the right direction.

It seems so unfair that you have to worry about stuff like your maternity pay when you have so much on your plate already. Did you have any luck talking to your employer, or to Bliss? If there's anything any of us can do in terms of looking into this sort of stuff for you, please say.

Love the sound of his dungarees! Bet he's quite the smartest boy on the unit Smile. Love and positive thoughts, as always.

Isitme1 · 26/08/2013 10:02

Aww bet he looks amazing in his clothes
Glad to hear hes doing better x

dinkystinky · 26/08/2013 21:40

Keeping everything crossed that the high flow nasal cannula makes a huge difference. So glad you've had a better week - praying for an even better week ahead for you and Oliver and bet he looks gorgeous in his outfits! Re mat pay - definitely speak to work to check out everything fully as it may be there is some flex for compassionate leave.

DIddled · 26/08/2013 21:46

Xx hope you are all ok - checking in - sounds like good news xx

Isitme1 · 29/08/2013 07:31

How's he doing x

KateCroydon · 29/08/2013 15:40

Just thought - if you're a union member they'll be very willing to help you work out what your rights might be re: compassionate or sick leave and how best to approach management.

AWhistlingWoman · 29/08/2013 19:00

Yay for dungarees!

My DD2 spent just over four months in NICU / SCBU and came home on oxygen. Don't know if it helps at all but I understand you can claim disability living allowance for a baby on home oxygen? I didn't do it myself but only because my brain was too fried to cope with the forms! I think that the Bliss website has a bit of information on it and if Oliver has a community nurse they might be able to help you fill it out?

Definitely worth asking about compassionate leave but I know that the community nurse I saw was fairly confident that I would be able to get signed off sick if I wanted it at the end of my maternity leave.

Do you still accrue annual leave whilst on maternity leave? I know that was something I had so I got another six weeks or something at the end of the year at full pay?

Hang on in there.

TwentyTinyToes · 31/08/2013 18:56

His little outfit sounds very cute! Hope you are all doing ok? Flowers

Isitme1 · 01/09/2013 22:26

Hope you're both well x

ClenchingPanda · 02/09/2013 05:57

How's things with Team Oliver? Hope he's still rocking his dungarees! X

Gurke · 04/09/2013 19:17

I hope Oliver and you have had a good week. How is it going?

Thinkingofmyfabfour · 06/09/2013 12:24

Hi shiv hope you and Oliver are having a better week.
Thinking of you

thomasmad · 06/09/2013 23:20

Hoping that everything is fine and that Oliver is making really good progress. I found that even at 9 wks everything was getting on top of me, never mind what your family have had to go through. We are all thinking of you ( even hubby !!) keeps asking how you are all doing. Take care, lots and lots of care! Ask friends to keep in touch for you if it helps and try lots of distracting tactics; gripping novels, trashy mags, trying to take time for yourself. Do whatever you can to stay sane. Thinking of you all.

Original poster
Supershiv1 · 06/09/2013 23:43

Hi.
Well.......there have been no dramas!
Oliver is on high flow and has had his pressures weaned from 8 litres to 4 litres over the space of approx 10 days. He's in around about 30% o2. He seems really happy.
He had another echo and his pulmonary pressures have reduced from 45 to 20 (high end of normsl now - so thank you viagra).
The only blip has been when he was attempted on 4 hourly feeds. The nursing staff decided to do all bottle, when he should have only been given a bottle if rooting and it resulted in him getting tired and a few desaturations - unfortunately at the same time he was having a sats study.
The consultant wanted to put his pressures back up to 5 but I persuaded him that I didn't believe the sats study was reflective of Oliver's general performance and that the feeds had something to do with it as I could correlate them to the desat periods on the paperwork. Luckily he listened and we've gone back to 3 hrly feeds with a mix if tube and bottle. Why they wouldn't analyse the data in this way themselves I don't know, but I have been told I am pretty anal myself!
Had a meeting with Oliver's named consultant and we'll do another sats study Sunday night and if good will go down to pressures of 3. If we can get to pressures of 2 we might be transferred back to our home hospital! !!! Steroids have been mentioned as along term ooption, but hopefully we won't get to that.
It's weigh day tomorrow. Oliver is currently 7lb 6oz.
Having him on high flow is a joy and I can get him out and cuddle and wind and feed him so much easier.
Is there possibly light at the end of our tunnel??????

OP posts:
Poppet45 · 07/09/2013 00:05

Oh high fives to you and O! I have so much empathy about the feed sxhedules. Willow's paed team refused to keep beak feeding her four hourly volume due to asphyxiation risk and simply couldnt comprehend that babies fed more often than that. She was 4lbs at that stage and as I pointed out my strapping 9 and a half pound son was six months before he could go four hourly. Scbus are great but they dont get bfing at ALL. Anyway as soon as she got home she decided two hourly feeds were her thing! X

thomasmad · 07/09/2013 00:24

Oh so pleased for you all!! Was hoping all was well and thinking that perhaps it was good progress. Yes, it is definately light at the end of the tunnel!! When I got my boys transferred it was wonderful and so much easier being closer to home. I just think that you have been so inspirational. What a strong, big, boy!! You have gone so far and home hospital will be next. Take care. Would still recommend some distractions to help you cope and pass the hours. I read thrillers and can't put down till the end novels. How did others help pass the time in SCBU?

MikeLitoris · 07/09/2013 00:27

That is so good to read shiv.

He really is a little fighter.

Isitme1 · 08/09/2013 15:36

So happy you've had some good news.
Sis has had a premature baby. He was 24weeks and weighs 1lb5
X

TwentyTinyToes · 08/09/2013 20:32

Excellent news, go Oliver!! X

MightBeMad · 08/09/2013 20:43

Great news shiv! Hope tonight's sats study is going well.

Original poster
Supershiv1 · 10/09/2013 00:16

He failed the sats study :-(
I have persuaded them to repeat the study tonight as I had a number of points regarding last nights study.

OP posts:
Original poster
Supershiv1 · 10/09/2013 11:51

But he passed last nights study.
Next one on Wednesday to get to pressures of 2 x

OP posts:
cordiality · 10/09/2013 11:52

Still here supporting you Shiv, sometimes these things are a case of two steps forward one step back but you will get there in the end! Little Oliver sounds like a brilliant little fighter, you'll be telling the other mums about his shaky start when he's captain of the football/rugby/wrestling/ballroom dancing team!!! Best of luck with the repeated study, we're rooting for you all.

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