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Premature birth

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Original poster

Tips/Advice on how to cope please.

365 replies

MultipleMama · 29/09/2013 13:43

I'm having a ELC on 4th October, I'll be 31+3. This pregnancy has been high risk from the start due to being twins but due to more complications; me and one baby, it's been stressful and heartbreaking. I won't go into too much detail and ramble on.

Here's the facts:
T1's has Oligohydramnios, started at 9 weeks. Always up and down.
T1's has SUA and severe IUGR diagnosed at 20 weeks.
T2 is healthy and estimated at 3lbs.
T1 is estimated at 1lb 5oz.
I had an Iron IV at 24 weeks.
Went into preterm labor on Monday. Had magnesium until Friday afternoon and steriods.
I have 4 other DC who are thankfully in school/nursery all week.

I'm struggling to deal with it all and have no idea what I should pack in my bag seeing as I won't be bringing them home. We've had a tour of the wards but it's not really helped.

What should I expect involvement wise. I want to use cloth diapers but no idea where to start for babies that small or even if they're allowed. I plan on calling the NICU but was hoping you lovelies with experience could lend me some tips and advice.

Sorry for the long post! Stuck in a hospital bed has left me nothing to do but think.

OP posts:
plentyofsoap · 20/01/2014 01:18

Hopefully it will all go to plan! He sounds like he is doing so well. I bet you cannot wait for a cuddle. How are you finding the care over there in comparision?

FraggleRock77 · 20/01/2014 09:16

Such great news MMama. There seem to be lots of positive steps forward, even though there have been a few steps back. Keep sending the updates xxxSmile

Mama1980 · 20/01/2014 09:27

Great news, hope everything goes well. Thinking of you all x

Original poster
MultipleMama · 20/01/2014 10:02

I can't really compare as I've only been in one German hospit and it's this one but can tell you what I've notices being here.

  1. Do not ask questions - it's not that they don't like it, it's that they aren't used to it. DH tells me that most German's don't ask because there's no need to ask. My first day there Apollo's Cardiologist told his pulmonologist, "she asks questions" to prepare him. Now, they're used to me!
  1. Their bedside manner - It's clinical but friendly but they don't go out of there way to help you. If you want pain medication, you have to ask (babies excluded). It's the norm here to have no pain meds after surgrey, they just suck it up.
  1. Food - The stuff is bland. I go out to eat - expensive! However they make this lovely special tea which is supposed to help your milk supply, they also have one of you've lost your baby - it dries your milk up.
  1. Communication - Despite being fluent, I always have to have a nurse who speaks both because they way things are pronouced can interprate what you say. Many times I've said one thing and they wrote down what they thought I said. After a while, you get to know how your doctor speaks and certian terms he uses.
  1. Doors - My parent room door has got to be closed, they are big on privacy. The hospital is almost sterile it's that clean. The cleaner won't clean the room if you are in, you have to leave and put a sign on your dooe that that says you want it to be cleaned.

Apollo is on CPAP!!! He had steriods yesterday which gave him the boost he needed. If he continues to do well they we start to wean him off the morphine later :)

OP posts:
FraggleRock77 · 20/01/2014 17:10

Love the detail MMama. Special tea sounds really interesting. Xxx

laspalmas · 20/01/2014 18:50

CPAP is brilliant news. So pleased. Come on Apollo!

Having spent our first two months in Spain before h was stable enough to fly home, I totally get the culture differences in the NICU. It will, like this journey in general, become your new normal x

Original poster
MultipleMama · 20/01/2014 18:50

Yeah, it's called Stilltee, from what I understand the tea is mostly fennel and Anise. It tastes a bit weird but after drink it most days, I'm used to it! And I think Sage tea was recommended for drying milk up.

Another thing they are big on here, or at least my hospital is Homeopathy and breastfeeding - which is highly encouraged. Both are something I'm supportive of :)

Apollo went from Radiant warmer to Incubator, and now they say if he continues to improve they will try him in a hot cot! :)

OP posts:
FraggleRock77 · 21/01/2014 07:14

Wow, i remember when our LO progressed to a cot. I wanted him back in his box ASAP due to colds/sneezes on the ward! Good luck to you all xx

Original poster
MultipleMama · 21/01/2014 16:25

I'm wary of the germs too, Fraggle! Even though he's still in box. I get anixous everytime they open it and a bit of draft hits him - he hates it too haha.

Luckily, not even family a part from the parents can visit if they show signs of cold. If you sneeze or cough. You're asked to leave - and parents with colds are either asked to stay away or of they're at the end of a cold to wear masks. One nurse told me, when I asked why someone was wearing a mask "a mother may risk getting her child sick - we all do it at home, that's fine. But here we have sick babies and will not risk them for one mother and one child."

I get to hold him tomorrow - excited!!

OP posts:
FraggleRock77 · 21/01/2014 16:53

Amazing. Enjoy every second. Make sure you take some pics xxx

Original poster
MultipleMama · 21/01/2014 17:01

Will do! When he's home, I'll post a pic of them :)

He will be moving into a Giraffe bed - the name always makes me chuckle!

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Original poster
MultipleMama · 22/01/2014 16:15

Had my first hold today. I blubbered like a baby! He's put on quite a bit of weight since I last held him and it shows I can now cup his little bottom in my hand! :)

Still can't see his little face due to the CPAP but it felt right to hold, even Artie settled down on my chest next to him. Onwards and upwards! :)

OP posts:
FraggleRock77 · 22/01/2014 17:05

Oh how wonderful. Really pleased for you. What a journey. Currently snuggled with my DS. Xxx

Original poster
MultipleMama · 24/01/2014 00:06

We start breastfeeding tomorrow! Cannot wait! I'm loving the amount of involvment I'm having with. One step closer to home :)

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Original poster
MultipleMama · 25/01/2014 01:06

Apollo is currently bf like a trooper! :)

OP posts:
FraggleRock77 · 25/01/2014 03:54

That is great news. Apollo must be loving the close connection and you? Grin

Original poster
MultipleMama · 25/01/2014 23:06

Totally and completely loving it. Grin

Artie grabbed one of her rattles today and has started actually reaching for toys!! Smile

Today has been pretty good. No dramas. They messed with his temperatures all day and for the first time since birth he has managed to consistently hold his core temp, his incubator temp is set at the lowest for him to see how he fairs overnight and if no problems, he will be moved officially to his giraffe bed tomorrow! Then on Monday/Tuesday (depending on how he fairs with the temp situation) Apollo will be weaned onto High Flow... hopefully! Smile Smile

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Original poster
MultipleMama · 26/01/2014 22:11

Apollo has done extremely well, today. He is happily settled into his radiant warmer, I have so much access to him, it's great. Though I am more weary of germs! As he has done well today and is maintaining a good temperature, tomorrow they are going to start weaning him onto High Flow!! :) :)

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Original poster
MultipleMama · 27/01/2014 18:02

Apollo is on Vapotherm!!!! :) :) :) They gave him steroids yesterday just give him that extra push and it worked! He struggled slightly at first but I think that's because it's prongs and he's not sucking in air like he did with the CPAP, but now he's doing really well, it's only when he's sleeping that he desats.

It was also confirmed that he has serve BPD which really, really sucks but we kind of expected it with the amount of oxygen and machines he's been on, we're just grateful he's had no other long lasting effects but they say it's very likely that he'll be come on oxygen.

OP posts:
plentyofsoap · 27/01/2014 21:06

He is doing so well you must be very proud Smile
If he has to come home on o2 you will manage and it will not be forever. I can't believe how fast time seems to be going with them all!

Original poster
MultipleMama · 27/01/2014 21:33

Me either! They will be 17 week old tomorrow. When I look at Artie, I see this chubby little girl she's nearly 10lbs! And Apollo still looks like a newborn it's so weird!

I'm very proud. Very nervous of even thinking about taking him home, nevermind on oxygen! x

OP posts:
plentyofsoap · 28/01/2014 09:19

Weight wise there is a good 5-6 pounds difference between dd and ds when they were at 15 weeks! Dd does seem alot stronger though. they will even out eventually Wink
It will be difficult at first but you will all adapt. How is his heart now? Any ops planned at all? how are you managing?

Mama1980 · 28/01/2014 09:43

Amazing news! Well done Apollo. How is his heart doing?
Any idea when you will be able to go home?
I bought my ds1 home on O2 and loads of meds, I wrote literally everything down, what he had and when I changed the tubing etc, kept me sane!

Original poster
MultipleMama · 28/01/2014 13:31

So far, no plans for surgery yet. Thank God. But a click and a stronger sounding murmur was picked up on his recent EKG and Echo which spotted a very, very leaky mitral valve due to an abnormal structure. He's to monitored often for any change as it can lead to LV failure if it becomes servere. If it gets worse he'll need heart surgery to repair his valve.

His heart in general is still weak but the PM has helped and he's on medication to help support the heart muscles and they're pleased with his progress.

I'm managing okay although anymore information and my brain wil explode! :) Berlin won't give us a estimated release date:(

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Original poster
MultipleMama · 28/01/2014 15:41

Apollo will be coming home on 3 medications for his heart, 2 for his lungs, 1 for his blood pressure (due to the newly discovered MVP) and 1 for his immune system.

I have bought a little book, that I will be writing everything down on. Did it help, Mama1980? x

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