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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?

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MultipleMama · 21/04/2014 20:22

naga, that's reassuring to here. He's got so many problems as it is that thinking him having anymore difficulties growing up breaks my heart... and sends me into irrational mode.

Original poster
Valdeeves · 21/04/2014 20:45

Let us know what the medical people say - it sounds like you have gathered all the right people - that's good.
How's Halo doing? Any slight changes?

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nagapie1 · 21/04/2014 21:10

It's a very hard thing to go to, I've been some pretty scary places in my head since my son was born. Don't beat yourself up, everyone feels like this.

My thoughts are with you, Halo and your family. PM if you want to chat any time.

FraggleRock77 · 21/04/2014 21:18

I don't have any experience of steroid use MMama. Just wanted to offer my thoughts and prayers xxx

MultipleMama · 21/04/2014 22:07

Val, the only slight changes are just his temperature rising up and down constantly and his diarrhea has started again. Otherwise no change.

Everything is just weighing me down. I'm trying to stay positive and enjoy the DC and I did over Easter but now, now it's like I'm crashing. Found DH song writing today and then I found him walking around the garden (with Dom on his shoulder falling asleep) crying. That how I know he's worn out and crashing too. Such a strain on us.

Original poster
Valdeeves · 21/04/2014 22:57

I can't imagine what you are going through. Lets hope the night gives Halo some improvement tomorrow xxxxx

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Original poster
Valdeeves · 21/04/2014 22:59

Let yourself crash if needs be Mmama - sometimes letting go for a little bit helps. Sounds like you've had a fair bit of stress since the little one was born, lots of worries, lots of thinking through the best solutions for care.
You must be shattered, get some rest tonight xxxx

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FraggleRock77 · 24/04/2014 09:30

Just to say I'm still thinking about you and your LO. I'm hoping that there has been some improvement xxx

MultipleMama · 24/04/2014 14:33

Thanks, Fraggle. No improvements but no deterioration, thank God.

Poppet45 · 24/04/2014 19:59

Oh Mama Ive been following Halo and Artie's story since yr first thread. I'm so sorry to hear of your latest battle. I'm not going to say I cant imagine how you feel because I can. I wish I could take some of the fear, sorrow and worry from your shoulders. You've all of you been though enough now. Sending strength and prayers x x

Original poster
Valdeeves · 25/04/2014 19:02

Mmama did you go with the steroids in the end?

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MultipleMama · 25/04/2014 20:12

Hey, Val.

In the end we had no choice but to go with the steroids. MRI is showing more damage and the swelling hasn't gone down at all, it's slightly increased. As of 6pm, Halo was put into a medically induced coma and in the process of lowering his body temperature. It's... not looking good, at the moment.

Pipsmilkmaid · 26/04/2014 15:17

Hey Mmama how are you holding up? Has there been any change for Halo? Xx

Original poster
Valdeeves · 26/04/2014 21:59

Mmama - I am holding your hand and I will be praying for your little one every night xxx

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FraggleRock77 · 27/04/2014 03:26

MMama, you're in my thoughts every day. I'm praying for Halo x

MultipleMama · 27/04/2014 19:52

Hey ladies.

What a day. Never a moments peace. Apollo is checked every 15 minutes by nurses, and scanned every 4 hours. They've pricked and prodded him so many times his arms are bruised from shoulder to fingers. And they've replaced the PICC line in his arm for a central one but this time in his neck :(

The cooling is however working and within a day his swelling has decreased at a very pleasing rate.

Spent today with the DC ice skating while DH stayed the day at the hospital. I'm also starting to feel guilty and crappy because we've had to introduce Artie to bottles for the times I'm not there. We had just been using the SNS attaching it to DH's chest to mimic feeding it worked really well but she was falling asleep before finishing. DH loved the closeness and I feel awful that we took that bond away from him :( It sucks!

Poppet45 · 27/04/2014 22:54

Brilliant news for the boy!!! Really thrilled for you x x Dont beat yourself up about the bottles. It neednt be forever and you cant be in two... Or six places at once. Heres hoping hes turned a corner for good now.

Original poster
Valdeeves · 27/04/2014 23:52

Great news!!! Don't worry about the bottles - mine where never good latchers so we always had a bit of that going on.
Hoping for more progress this week xxxx

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MultipleMama · 28/04/2014 23:35

Hello, lovely ladies. Spoken with Halo's neurophysiologist and neurologist and they are pleased with how well he is responding to this drastic method. They say the damage is permanent however he is young and his brain is still developing that his brain with accomadate and pick up the slack and other parts of his brain will take over. He will need physiotherapy for his left side and he may always have trouble in some aspects but they are optimistic that he can and will make a full recovery. We spoke to a pedeatric physiotherapist who deals with children like Halo and talked us through our options. All of his care team are weary but optimistic! I am so f**king relieved! Ignore my French!! Grin Grin.

As of right now they are warming him up gradually and hopefully by Wednesday he will be ready to be "roused" and then we just wait for him to wake up. I cannot wait to see his big green eyes staring at me! :)

Also spend the morning with the DC making pictures for Halo. Also took them swimming (the swimming club didn't know what hit 'em! Grin). A very positive day.

Pipsmilkmaid · 29/04/2014 18:41

That's great news. Hope everything continues to move positively. Xx

MultipleMama · 30/04/2014 04:32

Thanks pip. X

Mama1980 · 30/04/2014 08:24

Thanks for redirecting me over here Smile
I'm so so sorry to hear Halo has had such a rough time, what a little fighter he is! Glad. Your latest update sounds more positive. Great news Artie is doing so well, such a strong little girl.
How is Halo today?
How are you doing?

Alex is doing well, thanks for asking, he is walking now but is needing physio to help with his muscle tone. He is getting very frustrated that he cannot walk everywhere. He wants to do everything at a million miles a minute! The hospital are amazed at his progress though, he only goes now 4 times a year to check for any issues especially with the experimental drugs he received but so far so good and no issues are presenting Smile

Mama1980 · 30/04/2014 08:25

Do they still plans to 'wake' him today? I have everything crossed it goes smoothly and you get to see him looking up at you soon x

MultipleMama · 30/04/2014 13:06

They are currently in the process of weaning him. They've had to slow it down a little more as his ECG was showing distessing signs, it may take them until tomorrow for him to be weaned completely. But the outlook is good. We've been told it could take up to a couple of weeks for him to "wake up".

I'm doing okay. It's just very scary. I think this part, the waiting is the worst.

Glad your ds is doing well and I'm sure he'll master walking in no time :)

Original poster
Valdeeves · 30/04/2014 21:12

Wow that's good news!! I'm so pleased for you Mmama x

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