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Premature birth

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Original poster

Kanga Mamas/ No NCT/ new thread

387 replies

Valdeeves · 17/03/2014 04:59

New thread - happy Monday!

Just incase you are wondering this is a thread for premmie mums who feel like they have missed out on the NCT classes experience and would like to chat.

I have missed out twice as has had two premies!
One of which seems to be wide awake at 4am - I have just fallen over a toy trying to get to her and am now cuddling her praying she'll drop off fast!
How's everyone?

OP posts:
Bankholidaybaby · 15/04/2014 19:26

Oh, mmama, I'm sorry to hear that. It sounds like you're in good hands, and have lots of support, but there's plenty more here, too. My family is thinking about and praying for your family.

MultipleMama · 15/04/2014 21:26

Thanks. Means a lot.

Halo can no longer hold his head up, follow something with his eyes, his natural reflex of gripping my hand is gone, and he can no longer swallow. He's still on CPAP and sleeps 99.6% of the time. He's on a course of antivirals, pain relief and meds for his fits. His fever is down to 39.4.. he's pretty ill.

FraggleRock77 · 16/04/2014 20:24

I'm not religious but I'm just about to say a little prayer. My thoughts are with you xxx

Original poster
Valdeeves · 17/04/2014 14:19

MMama just caught up as been busy with extended family.
Are you ok? What's the latest with Halo? I'm so sorry to hear he's so ill. Any progress?

OP posts:
MultipleMama · 17/04/2014 20:12

No change with Halo but he was sedated today due to how distressed he was becoming. I'm okay just tired and missing family.

Bankholidaybaby · 17/04/2014 20:33

Thinking about you all day. I hope the sedation gives him some relief.

Pipsmilkmaid · 17/04/2014 21:02

Thinking of you mulitplemama I hope he's on the mend soon.

Original poster
Valdeeves · 18/04/2014 17:51

Hope he improves tomorrow MMama

OP posts:
MultipleMama · 19/04/2014 10:39

Thank you for all the well wishes.

Early hours this morning Halo kept going in and out of conciousness and at 6am this he was ventilated.

Artie is doing well. Sleeps mostly but is back to smiling and feeding with gusto. Once she'll full recovered we will think of weaning.

FraggleRock77 · 19/04/2014 14:09

MMama we are all thinking of you. You're being incredibly strong xxx

Original poster
Valdeeves · 19/04/2014 17:44

Are you alone at the hospital Mmama? Xx

OP posts:
MultipleMama · 19/04/2014 20:10

I was but DH came this morning and is taking over, so he's staying until Monday morning (going straight to work) and I'll be taking a break from the hospital and looking after the DC. I'll be back at the hospital Monday afternoon. xx

livenlet · 19/04/2014 21:10

Mmama praying for your baby boy hes in the best place you must be exausted
12 year old gone home now it was fun he is a lovely polite sweet boy my girls loved him I had nothing to worry about

Original poster
Valdeeves · 19/04/2014 22:07

Glad to hear it went smoothly Livenlet, Mmama try and get some rest - I bet you are exhausted.

OP posts:
Original poster
Valdeeves · 20/04/2014 20:36

Mmama, how's things? You ok?

OP posts:
FraggleRock77 · 20/04/2014 20:45

You're still in my thoughts MMama. How is your DS? X

MultipleMama · 21/04/2014 00:03

So it's 1am and just had a massive meltdown. Felt good but it's drained the last bit of energy out of me. Haven't cried like that since Halo had Sepsis. Totally wrung out but snuggles from Artie are the greatest cure.

No change from Halo. Still sedated and ventilated. We have been told that the antivirals are doing their job so that's great news :)

Original poster
Valdeeves · 21/04/2014 00:49

Hope you see some change quickly, sending a virtual hug your way x

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MultipleMama · 21/04/2014 10:17

Ladies, what's your view on steriods?

I'm stuck - Halo was given countless when he was hospital before due to his stubborness of not wanting o come off the vent and CPAP and then was given more during his Sepsis treatment. It turned him into a 'roid baby and still is dealing with after effects (irribility etc). And research shows bad side effects and damage from overuse or used for long periods of time. I hoped to be rid of making desicions concerning steriods. However the hospital told DH that the swelling on Halo brain isn't going down as much as they'd like to have seen already, in fact it's barely gone down at all. They've been giving him blood pressure and dieterics for a few days but they seems to have no effect and would like our permission to do a trial course of steriods - they also admitted that due to what he's had already they can't rule out further damage which the steriods may cause. We have been told to way up our options.

DH doesn't want to use steriods. He's really against but wants my input --I was kind of hoping he'd made it already so I wouldn't have to choose which I'd rather risk more and just be angry at him for not telling me- ...

What would you do?

nagapie1 · 21/04/2014 10:54

Sorry, MM,what are the risks?

MultipleMama · 21/04/2014 14:36

The steriod risks are the usual i.e ADHD, chemical imbalance, impaired brain growth - DH is more concerned about the latter. He's worried that it will impacted Halo more due to the damage his brain is already suffering and doesn't want to give the drugs a chance to make it worse. Which I understand and have the same fears.

Risks of not using steriods are increased chance of brain damage and brain death - if swelling is left to "fester" too long. We have the option of waiting a few more days to see if the dieterics and blood pressure meds help before trying steriods.

So we either wait and increase risk of more brain damage or try the steriods now and risk making it worse before he gets better...

MRI already show some damage to the left side of his cerebellum.... :(

Original poster
Valdeeves · 21/04/2014 16:18

What a difficult choice for you Mmama - and one only you can make.
My only experience of steroids is being used for asthma and brain tissue swelling (a friend.) These people are ok now if that helps.
I would probably seek the highest medical opinion you can get in the hospital before you start.

OP posts:
Bankholidaybaby · 21/04/2014 16:47

Mmama, I'm so sorry you and your husband are in this position - I was going to say that in that sort of situation I try to weigh up the risks and go with the option most likely to do good and least likely to do harm. Your choice doesn't sound clear cut at all. I agree with valdeeves about medical opinion - I would get their lead paediatric consultant and a neurologist to talk me through it. Little Halo, every time I see there is a new message on this thread, I hold my breath.

MultipleMama · 21/04/2014 17:16

Thanks for your input ladies. We're going to call Halo's neurologist tomorrow (I trust his opinion and he's all about facts and honesty) which is what we need and we'll also be talking to the head neurologist (one of the hospital's specialities is neuro). We already have the lead paediatric consultant assigned to Halo. She's hard to deal with but very good at what she does.

I just wish it was a simple decision to make. DH and his stubborness isn't helping much either, he just wanted a straight decision between us, a clear cut one... I feel him withdrawing...

nagapie1 · 21/04/2014 19:02

Sounds like you have some medical professionals you can trust, which is really important in this situation.

Just about brain growth - one of the bits of damage to my son's brain when he was born was delayed growth. When I spoke to the leading MRI specialist in the UK about this, she said that wasn't such a worry as long as his brain grew after and remained tracking upwards.

The scary thing about brain stuff is no one can tell you for sure where you are going and what the outcomes will be but they will tell you that babies' brains are plastic and can improve tremendously with the right input and the chance of physical health. We are finding this true for our son, who has had two MRIs since birth and the second one showed improvement in all areas.