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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:
StillNoFuckingEyeDeer · 10/09/2013 12:30

So glad last nights sats test was better. Good luck for Wednesday night. Team Oliver is still supporting you.

thomasmad · 12/09/2013 21:29

Fingers crossed all going well!! thinking of you and litttle Oliver.

Barbarashop · 12/09/2013 21:32

Long time lurker on this thread - popping us to let you know I'm sending you good wishes.

HappySmileyFace · 13/09/2013 13:31

Goold star for passing the last study Oliver!

laspalmas · 13/09/2013 21:50

Hi Shiv. I don't look on these forums very often and never post but felt compelled to sign up and post sth tonight.

I'm Louise, mum to Hugh, an ex-24+6 weeker who has had a whole host of problems including grade 4 ivh, PDA ligation, nec 3 times, ROP surgery. Hugh spent 53 weeks in hospital before being discharged home in June a week after his first birthday. (He was actually born abroad on holiday to complicate matters further). He eventually ended up needing a tracheostomy which was my worst worst fear but has been the best thing that ever happened to him. He has bronchomalacia (which he should grow out if with time and weight) meaning the main bronchi in his left lung were collapsing every time they were put under stress (ie crying, feeding).

We made a video for his first birthday charting his incredible progress which is on you tube. Search for Hugh Hunter Birthday and it will pop up. I remember looking for stories like ours and not being able to find them. It's been a rollercoaster of a year but Hugh is now home and growing and developing like a weed. In fact, they've had a look in his lung today with a camera and his bronchomalacia has already significantly improved. We'll probably have the tracheostomy for a few more years but there is a big light at the end of that tunnel and I am actually starting to see it now.

Look after yourself and your little guy and stay in touch x

NewToAllThis11 · 14/09/2013 12:59

Hoping you and Oliver have had a good week, Shiv. And, Louise, just wanted to say I've just watched your video and wanted to say what a marvellous little boy you have in Hugh. My own son spent 16 weeks in hospital having been born at 27 weeks, which was tough enough, but you and and your family have been incredibly strong to spend a year in hospital. Hugh is gorgeous, as is your other son. I'm so pleased he's doing well and I wish you all the best.x

Original poster
Supershiv1 · 14/09/2013 13:27

Wow Louise! I really don't know how you did it!
Thanks for the support. Oliver is now down to pressures of 2 having blitzed the last sats study.
The next study is tomorrow night to move to low flow canula.
If ok the consultant is instigating a discharge meeting to get us back to our home hospital in Chester. Yippeee!
Oliver was 5 months old yesterday. Xxx

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laspalmas · 14/09/2013 13:31

Thank you newtoallthis.

Shiv, I hope our story and the video helps you. It's hard when due date comes and goes and you feel like you are the last person in the unit. It's important to always have hope and know that even some of the terribly long and most complicated stays have happy endings x

georgedawes · 14/09/2013 13:46

what lovely news. I hope it happens soon, he has come so far xx

KateCroydon · 14/09/2013 18:04

Thank you all for sharing your good news.

Humuhumunukunukuapuaa · 14/09/2013 18:16

Tha k you for the updates Shiv I've thought of Oliver often. Wishing you and your family every piece of luck you deserve (lots ;) )

thomasmad · 14/09/2013 21:40

Fab, fab,fab news!!! and so pleased to hear Hugh's story too.

Original poster
Supershiv1 · 17/09/2013 10:33

Oliver moved to low flow canula at noon yesterday. This morning he was put back on high flow @ pressure of 4 as he was working hard and his blood gas wasn't great :-(

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StillNoFuckingEyeDeer · 17/09/2013 12:14

Try not let a little step backwards get you down, shiv - Oliver has made great progress. I'm sure he's only back to 4 because he was worked a little harder than he was ready for and he'll be back down to 2 after a break and he can try again on low flow.

laspalmas · 18/09/2013 11:21

Its hard work this breathing and feeding lark for these little guys. It may just be time that he needs. I know you are desperate to get him home and for progress but these little prems get there, they just do it at their own pace. What's his oxygen requirement like at the moment? Is it the oxygen he needs or just the pressure? How's his feeding going? It can be quite hard work for them when they start stepping up the oral feeds too. Hang on in there. You are all doing fabulously. On days like these look back a week, a month and remind yourself how far Oliver has come x

laspalmas · 19/09/2013 18:17

Shiv, I've been reading through your old posts and would love to join your FB page for Oliver. Hugh has one too. I'm pretty new to mumsnet - can you do Pm's? Otherwise if you ask to join Hugh Arlo Hunter on FB, maybe I can find you that way?

I hope Oliver has been behaving himself. I feel like you've had a really similar journey to us and its exhausting, mentally, emotionally, physically and financially. You guys are doing brilliantly x

Beginningofthejourney · 20/09/2013 16:12

laspalmas I just has a look at Hugh's Facebook page...he is gorgeous! Love the video on YouTube too, brought a tear to my eye.

Shiv hope you and Oliver have had a good week, I think of you all often and hope you get back to your local hospital very soon! I know how gutting the backward steps are especially when you think you are heading towards escape! Xxx

Mama1980 · 20/09/2013 20:26

Hi shiv I hope you and Oliver have had a good week? I've just been catching up with the thread. I've been thinking of you both. X

Laspalmas, your video is beautiful Smile I'm mum to a 24 week preemie myself.

Original poster
Supershiv1 · 24/09/2013 09:05

Oliver has been on high flow pressures of 3 for a week & will be going to 2 today. Doing everything slowly and at his pace.
We've also moved to 4 hourly feeds.
He is jolly in himself (unlike my husband who has gone back to work)& has even given us the odd smile x

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NewToAllThis11 · 24/09/2013 10:02

Well done, shiv and Oliver. Steady, boring progress is exactly what you want. Hopefully you're on the road to your local hospital now, and then home. Glad to hear he's feeling jolly in himself too. How are you though? Oliver has come such a long way x

ClenchingPanda · 24/09/2013 12:59

Hi Shiv - great as always to hear your update. I think of you often. Slow and steady is great, alas nothing happens fast but it's all progress in the right direction (hopefully that direction is out of the door and toward your local hospital).

Lovely to hear that you are rewarded with smiles - nice one Jolliver!

thomasmad · 24/09/2013 13:49

Great news, hope your husband's return to work o.k too. Thanks for update.

KateCroydon · 24/09/2013 18:59

smiling!

StillNoFuckingEyeDeer · 24/09/2013 21:53

Oliver has come such a long way!

Original poster
Supershiv1 · 26/09/2013 18:39

Good gas on pressures of 2, now to see if he can cope on 30% o2 xx

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