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Join Date: Feb 2012
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36 weeker with bad hyaline lung disease.

Jan 27th, 2013, 16:25 PM   #1
Well I went in this morning for monitoring due to lack of movement. I had an emergency c sec everything look fine. However my little Matthew developed hyaline lung disease. It's got really bad for some reason and he is now being transferred to the premier paediatric hospital in Australia (for those of you who don't know I live in aus.).

He's 8 hours old and we are already going to be separated by 20kms. My nurse said in situations like these they will get me up tomorrow morning asap and then once I've emptied my bladder twice by myself they will dose me up with all the pain killers they can and give me a "hall pass" so to speak and let me visit for an hour.

Sorry I know he's not exactly premie but this is the place where people would know how I feel right now.

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Jan 27th, 2013, 16:27 PM   #2
Oh sweetheart sending the biggest hugs xx sending lots of thoughts for you all xxx hope you are able to be with him soon and that the doctors can help xxxx

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Jan 27th, 2013, 18:09 PM   #3
So sorry to hear you're having such a tough time, but congrats on finally meeting your precious little one. I don't really have any advise, I'm afraid but just wanted to send you my warmest of wishes. Get better soon Mathew xx

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Jan 28th, 2013, 04:09 AM   #4
Sending hugs and love.

I know how hard it is to be separated and to have a unwell baby what exactly is it? I've never herd of it?

My best advice to you is, keep strong and keep positive, but don't try and be strong for others. Look after yourself as baby needs a strong mummy and if you want to cry, you cry!!!

I was a mess the first few days Ollie was in NICU. But I figured I needed to pull myself together for his sake. Once I got used to the NICU routine and was able to do things for him - wash, dress, feed etc I felt much better.

Hope your ok xxxxx
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Jan 28th, 2013, 06:09 AM   #5
Sorry your little one is poorly. Over here hyeline membrane disease is known as rds or respiratory distress syndrome. I am sure your little one will recover soon x
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Jan 28th, 2013, 06:43 AM   #6
So sorry he's poorly sending you big hugs

Please excuse any typos from my fat fingers!
Tapatalk madness!

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Jan 28th, 2013, 10:57 AM   #7
to you and healing vibes for your lo.
Get well soon little man xx
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Jan 28th, 2013, 15:22 PM   #8
I was not able to get down there today. I'm really hoping tomorrow but I doubt it.

I just rang his hospital. He was doing so well earlier today they had started to reduce the amount of oxygen he was getting and were thinking of taking him off the ventilator but he was not well enough to do so. Right now it feels like he is not going to get better at all.

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Jan 29th, 2013, 16:22 PM   #9
oh hun i know exactly how you feel. the drs and nurses when G was in NICU kept saying how he was well enough to take this out and that out and then id hear from them that he actually wasnt and it was soul destroying.

Eventually i just asked what a realistic progression of events would be with a realistic time frame.

Stay strong hun you can do and if you need to cry - cry and if you need to talk to someone make sure you od. Having a baby in NICU is one of the most terrifying/surreal/ emotional times you can experience but it DOES GET BETTER!

Big hugs xx
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Jan 29th, 2013, 17:20 PM   #10
Hoping things get better very soon

Tapatalking :-D Can't see tickers...

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Jan 30th, 2013, 22:45 PM   #11
Yeah he's doing better. Last night he took the cpap off by himself and they left it off for a while to see how he went and it was really good. He had it off for quite a while before he needed it put back on. Fingers crossed it gets taken off forever today.

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Jan 30th, 2013, 22:46 PM   #12
Don't know anything about this but hope everything gets better ASAP x lots of hugs honey x

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Jan 31st, 2013, 00:00 AM   #13
Oh poor you hope Matthew is doing ok and coming on , take a day at a time.

Is that the same as wet lungs in the uk? two of mine had wet lungs, needed cpap and went to scbu surfactant still in lungs from c-sections

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Feb 5th, 2013, 22:52 PM   #14
hugs hun xx

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bad, disease, hyaline, lung, weeker

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