Tips/Advice on how to cope please.

[MultipleMama]

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.

He will get there.
You must be shattered. Are you moving in the new year still?

He just likes to keep me on my toes!

Yup, still moving. DH & the kids head down on the 28th while I stay here with Artie & Apollo until his transfer on 3rd. We've met the care team who will be taking over and it's so weird going from an English speaking hospital to a German one is surreal.

We wanted to avoid dummies like we have with other DC but it seems to be the only thing that calms him when I can't hold him. He's gotta have the preemie dummy as he hates the normal size ones for some reason. My son is so picky!

It must be alot to take in but the care will be excellent still.
Ds had a dummy, it helps their sucking reflex develop . Total nightmare to get off him by two but it settled him so its worth it. I tried with dd but she hates them. Its so amazing how different they are. Will you have support over there?

Why are my kids so cheery in the morning?! Little rascals who I adore so I can't be angry!

DH's family are in Germany, they live an hour away from our new home so I have great overbearing support around me. Plus we have some friends in Germany.

Lucky for us, he only seems to want to the dummy when he's upset as soon as he calm again we can take it away with no fuss :)

We're trying latching today!!! :)

MMama, you are wonder Women! I'm stressed out about moving in Jan two hours away and you're moving abroad!
I wish our DS would take a dummy to settle but he just spits it out!
Great that you will have all that support around

Very stressful but it's all worth it in the end :) Germany is a new better life for us as a family.

Apollo is smiling so much more between crying and sleeping. I'm So proud of him!

At 4pm he latched and fed for the first time and we only started trying at 10am, super proud. I found the CPAP annoying though and rugby hold is the only way to feed him without stressing him.

:) Such a good day.

Little update:

Apollo had scans, tests and more scans today and a lot of humming and discussions between the consultants here and the one's in Germany. Not going into much detail but Apollo's heart isn't doing what it should and is making it his already weak lungs work harder. He will be put under assessment once he's transferred and will move up his op.

In other news, whatever concerns they had about increasing his feeds are almost non-existent. He's really took to bf and is feeding roughly every hour and a half for about 20 minutes a time. He's gain weight at a speed they like and he's proving them wrong every day :)

Artie is smiling more everyday and feeding like a trooper, and she's even starting to lift her head :)

Hi sorry I haven't checked in sooner, things are a little crazy around here.
Wow amazing news Apollo is feeding so well what a trooper. I'm sorry to hear about his continuing heart issues, as I said in my pm s if there's any questions I might be able to answer or help with feel free to ask.
Artemis sounds like she is doing amazingly well, you must be so proud of them both.
When are you moving? Great the drs seem to be communicating well, will hopefully make things so much easier for you all.
Thinking of you all often x

Thank you, M1980, the support I'm receiving is wonderful. I truly feel overwhelmed. I never knew how emotional and how completely defenseless I would feel just by have a baby born premature. I like to think that for everything he battles, he excels and becomes stronger from it.

We're moving on 28th. DH & kids head down then, I'll be stating with Artie & Apollo until 3rd.

Won't be on over the holidays due to moving and Apollo's transfer so, today I'm gunna wish you all a Merry Christmas & Happy New Year! See you in 2014! :)

You too. Good luck with the move. Merry Christmas xxx

Merry Christmas to you and yours. Enjoy your first Christmas Apollo and Artemis

Hope you all had a lovely Christmas.

The hardest thing I've done is watch my family leave me behind. This morning was horrible. The twins knew something was up and wanted nursing constantly, K was really quiet, and A was her usually quiet self, a bit oblivious. Once in the car and the twins realised I wasn't coming, the screamed which set off A and K was crying quietly, bloody broke my heart. Just got a call from DH, they're now in France and he's only just got the kids sleeping. I feel awful but I have Apollo & Artie for company. My dad is heartbroken though...

Apollo is stable but on steriods for his heart and lungs. His feeding wonderfully and he's starting to interact more and more with Artie, like he recgonise her. Bring on 2014 :)

Just nosing around threads as I like to read how other prems are developing and hoping to see happy outcomes :) I noticed that on quite a few their babies were given suppliments etc for slow weight gain. Apollo has and still does struggle with his weight. It was very slow and we were never offered suppliments for him. Not that we would have accepted them - I'm against them for certain reasons, but I was just wondering why weren't offered them. Do babies have to be a certain age, or breastfeeding or bottle feeding to have them. Just curious and rambling. Still new to this preemie world! Haha.

My prem twins were offered fortifier to improve their weight gain, and it worked beautifully. It was mixed with ebm and then tube/bottle fed to them. They came home with a range of meds & supplements, but by that point none of them were for weight gain. Glad to hear your twins are improving in their own different ways

My DS had fortifier until he came home. It was pretty routine with such tiny ones but it varies between units I think. I'm not sure I'd agree to it now, I'd definitely want to ask more questions. Just because I have a better understanding of bf and the virgin gut.

Bless you on your own with your little ones. You ate going to look back at this time in awe of your own strength.

I asked Apollo's nurse why we weren't offered and he said that even though he may have benefited from it, Apollo responds really well to b/m and didn't want to run the risk of upsetting his gut.

Apollo is a little worse for wear today, his temperature keeps dropping so he's swaddled and his incubator temp has been turned up slightly. His lips are tinted blue, but though his heart rate is really low but normal for him, so he needs more tests and hope to stabilize him before the transfer or they'll have to postpone it. Urgh.

Hi multiple
sorry to hear about Apollo's temp, hopefully it will get back to normal levels soon.
just popped on to wish you a merry Christmas and Happy New year. Xx

Merry Xmas & Happy New Year to you too, Shiv. Hope 2014 brings Oli much happiness xx

Tomorrow is transfer day. I'm a nervous wreck and unable to sleep. Apollo still isn't stable and if he isn't stable by this afternoon his transfer will be cancelled. Fingers crossed for him! He has an MRI, ECG, ultrasound scans tomorrow :(

Decided to bedshare with Artie, tonight. I cannot believe she is 13 weeks old aka 1 month adj! So surreal. I keep staring at her and watching her nose twitch when I touch it. :)

Fingerscrossed he will be ready to go. You must be missing your other children so much but it will not be forever. They will not risk it if they are not happy.
Time just goes so fast glad she is doing so well.

Good luck MMama. Wishing you a safe transfer xx

I've been following your thread since my little girl was born at 31 weeks, 10 weeks ago.

Really hope it goes as you want it to today xxx

We're here and settled! Thank you all for the well wishes :)

I would like to thank ADAC and their amazing staff who reassured me and talked to me through everything and explain what would happen.nd They also took the time to watch over Artie too. The incubator was massive and bloody scary. On board their was the pilots, a paramedic, a Neo nurse, a neurologist and a cardiologist plus me and Artie. It was a scary, surreal situation but friendly and calm.

Apollo will stay in Berlin for his heart assessment where they will decide if he would benefit from the pacemaker operation now or later. The staff are friendly, lovely but intense and very proffessional and it's so weird hearing German where ever I look. Talk about culture shock!

Now it's morning and I can breathe with DH beside me. Apollo heart rate dropped to 24bpm, he was blue, floppy and unresponsive then while the care team were working on him, he went into cardiac arrest - his heart just stopped. It took a while to get him back - longest 2 minutes of my life. however his heart rate just kept on dropping, they said he went into heart failure and I had to make the decision whether we keep on resucitating him until his temp pacemaker could be fitted or sign a DNR. They have no idea if has any brain damage and even if his pacemaker is fitted successfully they don't know the quality of his life. I didn't sign it. I couldn't. He r.arrested twice and had another c.arrest. he had a temp pacemaker fitted at 4am and was put on the ventilator his heart is doing better and his colour has returned and his gases look okay. His pacemaker op is scheduled for 5.30pm. So much for his week assessment. Keep Apollo in your thoughts! Xx