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Connect with others and find premature birth support.

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Connect with others and find premature birth support.

Premature birth

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:

Report

mymatemax · 23/05/2013 11:28

great news that the steroids seem to be working.. could be the cuddles you know :) x

Isitme1 · 25/05/2013 17:48

How is he doing x

Doobydoo · 25/05/2013 17:57

Kangaroo care and Bliss...(from ex neo natal nurse and mother of premature baby!).xxxx

NowFourSpuds · 25/05/2013 22:38

Hi Supershiv,

This is my first post but wanted to give you my story. I have 23 weeker twins who both had pretty poor lungs, not surprisingly. Dtd was especially fond of the ventilator, my dts swayed between the vent & bipap every few days. Eventually we were told they would need the course of steroids. Luckily for us it worked for both twins, and other than one day back on the vent for DD it helped them to stay off and they soon started making good progress.

They came home at 2 weeks corrected, DD is on O2 but is currently being weaned, both had brain bleeds DD grade 3/4 and DS 2/3. It's very early days as they are only 12 weeks corrected but so far they are doing what they should be!

I'll be keeping everything crossed for Oliver to make the move onto bipap very soon. It sounds like you're doing a fantastic job!

PacificDogwood · 27/05/2013 19:49

Supershiv, I hope the steroids are doing the trick for Oliver

Keep on cuddling, ideally skin to skin, as much as you can - it's good for you and him.

Best wishes also to your twins, NowFourSpuds, their journey sounds amazing!

NoBloodyMore · 27/05/2013 20:12

Thinking of you and Oliver, hope he's still fighting and doing well xx

ThenWeTakeBerlin · 27/05/2013 20:30

Hope Oliver is ok, saying a prayer for you and your wee boy, Shiv

GotMyLittleLamb · 27/05/2013 20:33

Bit late to the thread but wanted to add I have a 26 weeker who weighed 750g/1lb 10oz at birth, went down to just under 700g at one point. Neonatal is a terrifying place and we had our share of ups and downs and DD came home 3 days corrected. She is now 15 months (12 corrected) and is just perfect, on track with all her milestones and lovely!!

Sending loads of love and best wishes to Oliver and to you. It's scary but they can work miracles sometimes :)

QOD · 27/05/2013 20:49

Hope he's ok x

Coconutty · 27/05/2013 20:55

This reply has been deleted

Message withdrawn at poster's request.

MakeGlutenFreeHay · 27/05/2013 21:08

Just seen your thread - I'll be holding you and Oliver in my prayers. He sounds like such a little fighter.

WingDefence · 27/05/2013 21:15

I've just found this thread. Prayers winging their way for Oliver and you and your DH x

Sarahplane · 27/05/2013 21:28

Sending lots of positive thoughts to you and Oliver. I hope he's well soon. My best friend was born at 25 weeks, her parents were told to expect the worst but luckily she's now a very healthy 28 year old. No adverse effects except that she's still quite small.

Whatalotofpiffle · 27/05/2013 21:33

Hand holding, don't know what to say. We are here for you xx

TwentyTinyToes · 29/05/2013 12:08

Hope you are all ok, been thinking about you. X

Isitme1 · 29/05/2013 18:16

Hope things are going well x

Supershiv1 · 30/05/2013 08:20

Hii.
Oliver finished his steroids earlier in the week and made it as far as bipap. We're taking time to get him to cpap as we don't want a relapse that means he's re ventilated.
I have had skin to skin 3 times now . Once Ollibobs tried to lick my chest so I am clinging to that as a normal baby thing in the hope it might demonstrate he is functioning despite neurological issues being bandied about.
He's now up to full feeds and canula free too, just wish he'd stop the bradycardia and desats (although they're not as bad as they were).
Thanks for your continued support. It means a lot.

OP posts:

JoEW · 30/05/2013 09:18

Hi Supershiv
Good to hear from you, I've been keeping you and Oliver in my thoughts. Great to hear you've managed to get some skin to skin, it makes such a difference.
Oliver is being so brave, bless him.

Supershiv1 · 30/05/2013 09:56

Just an update. Been on consultants rounds & Oliver is now on CPAP! Yippee....

OP posts:

Isitme1 · 30/05/2013 09:58

Aww bless. It's amazing how well these babies do.
I know a 26 weeker who wqs very ill at the start of life
She is now around 3 years old, goes to nursery and is a mischievous little monkey with no special needs and the most that she has suffered from is reflux and she has chronic lung disease.
Shes a little parrot!
X
How are you doing? ?
X

PacificDogwood · 30/05/2013 11:50

Oh, lovely, good news !

I have some lovely pictures of DS2 looking like a little piglet with his CPAP mask on - which WILL be used to embarrass him on his 18th birthday

And yes, how are you holding up??
Look after yourself - Oliver has more staff at his command than he is ever likely to have when he goes home x.

WingDefence · 30/05/2013 11:55

OP I have no idea what that means but it sounds good! :)

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PacificDogwood · 30/05/2013 11:56

Re bradys and desats: give him time, I know it's hard, but time is the only thing that will improve that, frankly.

I was trying to do the maths: is he 30 weeks yet? Or not quite?

FWIW, DS2 came home at 35 weeks after he passed the car seat test ie did not desat/get bradycardic when sitting in his car seat. He was born at 31 weeks and yes, much bigger than Oliver, so he may well take longer than that.
I can honestly say that our time in NICU/SPBU was the longest and most scary time of my life, but now (9 years later) it seems like a bad dream, and a short one at that.

Keep looking after yourself - it is honestly so important. You'll need all your strength for the coming weeks and even more so when he comes home. Which he will (hugs)

HappySmileyFace · 30/05/2013 13:40

Still been checking in on you (I have name changed) but you have been in my thoughts.

CelticPromise · 31/05/2013 20:32

Hi SuperShiv. I have only just seen your thread.

I have a 27 weeker who was 1lb 4oz at birth and took six weeks, PDA op and a course of steroids to get off the vent. I remember that amazing step onto CPAP so congratulations to you and I hope Oliver is coping well. I hope you are getting much more skin to skin now he is off the vent.

My DS took a good long time to get off CPAP and I got to be pretty expert at getting him out for a cuddle. We even started breastfeeding on CPAP. He came home on oxygen at about nine weeks corrected.

He is approaching 4yo now and you would never know he had such a tough start. No side effects from the steroids, not even a chest infection the last two winters. I wish for you and Oliver to be as lucky as us.

Flip

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