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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:
FraggleRock77 · 05/01/2014 13:42

My thoughts are with you MMama. I can not imagine what you are going through x

WhatKatyDidnt · 05/01/2014 14:21

You are being so amazingly strong for your boy. I remember sending my tiny DD down for life-saving surgery and it was the hardest thing in the world, but somehow you get through it. Apollo sounds like a superstar, as do you. Sending all best wishes for this afternoon.

Joanne20 · 05/01/2014 17:33

Have been following this thread and want to say that Apollo is in our thoughts and those of many others on here. You and him are so strong, you are an amazing mum xxx

Mama1980 · 05/01/2014 20:08

So sorry not to have posted sooner, I've not been about online. I'm thinking of you all, and desperately hoping Apollo can hold on. I've faced the same decision and couldn't didn't sign either. Allowing my, tiny son to undergo heart surgery to save him was the most terrifying experience of my life, but as you know my story has a happy ending. I've everything crossed that yours does too.
Thinking of you and Sending love and strength xxx

Original poster
MultipleMama · 05/01/2014 22:19

No worries! I just come on here to vent my thoughts or I'd just bottle things up.

Apollo is out of surgery and in recovery. The surgery had a few complications but was successful and lasted just over 2.5 hours, he gad a dual chamber pacemaker fitted. It's heartbreaking to put my son's life in some stranger's hand. Despite being debriefed about before and after op. I wasn't prepared for the amount of wires, tubes and machines. He will remain on a high vent until his heart and lungs have had time to recover. So, far he's doing well and his care team are pleased. So am I! Not out of woods yet but they're positive :)

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WhatKatyDidnt · 05/01/2014 22:43

So glad the surgery was a success. Hopefully this marks the start of a calm and steady last phase in the road home for Apollo. Hugs to you mama. It is truly gruelling, I know. You are doing brilliantly.

Mama1980 · 05/01/2014 22:52

Great news! What a strong little boy Apollo is. Fingers crossed for steady improvement now.
I hope you can all get some rest tonight
X

CelticPromise · 05/01/2014 23:04

Sending love to your special boy.

laspalmas · 06/01/2014 14:44

Gosh I'm just catching up. Sending lots of love and strength to your little guy.

We did an air transfer back from Spain to the UK when H was 8 weeks old. We travelled with Air Med. He was still very poorly and had never been extubated. While its hard getting used to a new system and way of doing things (although interestingly I found the move from neonatal to paediatric in the same hospital just as stressful) its a fresh pair of eyes and that in itself can be a really good thing for everyone.

I'm glad you are reunited with your family and hope A goes from strength to strength. Lots of love x

Original poster
MultipleMama · 07/01/2014 19:24

Glad to say Apollo is recovering well. He's off the high vent and on to regular. He's still in the incubator but they say he should now have a better chance of being able to regulate his own temperature a bit.

He's pacemaker-dependant with an innocent heart murmur so he'll be closely watched throughout the years to see if his Brady has caused any damage.

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Original poster
MultipleMama · 09/01/2014 20:02

No news, is good news as they say. Apollo is doing amazingly well on the heart front however they've had to put him onto something else for his lungs.

Artie is brilliant. She's started to like tummy time thanks to the lovely nurses who brought in the Fisher Price Rainforest Deluxe Gym for her to use by Apollo's incubator. She's also started to make eye contact when you talk to her, she gargles, grunts and she's rolled over twice! She's kicking the "premature" status' butt! :)

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plentyofsoap · 09/01/2014 22:30

Glad to hear that things have settled. Those play matts are great! How are you managing with your new home?

Original poster
MultipleMama · 09/01/2014 23:12

I haven't been home yet, kids were at their Grandparents when I went to sort things out. The kids seem to settling in although has told me that A's night terrors have started back which we were told to expect due to a change in her routine.

Hopefully when Apollo becomes stronger he'll be transfered to our local hospital and I can finally settle into our new home :)

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Original poster
MultipleMama · 11/01/2014 11:03

Apollo is no longer fighting his tube so he doesn't need to be sedated again until he needs scans etc.

This morning he opened his eyes for the first time since his op and it's such a relief to him aware. Onwards and upwards :)

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Original poster
MultipleMama · 12/01/2014 01:19

Apollo has hit the 4lb mark! Such a massive milestone for him! The staff are very pleased and have increased his feeds in hopes that he will continue to improve. So happy!

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Mama1980 · 12/01/2014 08:38

Wonderful news! What a Amazing little boy you have there Smile here's hoping for slow steady progress from here on in.
How are you and Artemis doing? X

FraggleRock77 · 12/01/2014 11:07

4lb brilliant. It's such a milestone. Onwards and upwards to 5lbs. How are you finding Germany? X

Original poster
MultipleMama · 12/01/2014 13:38

I'm just proud with every oz he puts on and every step forward he makes.

Germany is surreal, I've visited before but living here especially in an hospital environment is very... different. I speak fluent German but with my Yorkshire accent I feel like I'm butchering it! In Berlin, due to Apollo, but I'm loving the city - but looking forward to exploring Frankfurt! :)

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FraggleRock77 · 12/01/2014 13:41

Berlin is a great city. Grin

WhatKatyDidnt · 13/01/2014 19:43

Hope the last few days have seen more good progress. What an amazing little boy you have.

Original poster
MultipleMama · 15/01/2014 08:21

pollo is being a little stubborn. He's refusing to come off the vent, so they will try again today. If not, they'll leave it to next week and try him with steriods, again. They think that because he was on since birth and only recently came off, he's gone back to relying on it again. His lungs are massively scarred and weak but his heart though weak is coping well with the changes :)

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Mama1980 · 15/01/2014 13:30

Hi hope it goes well today. Great news about his heart Smile
Berlin is a lovely city, I took my eldest dd there for a treat and we had a amazing time. I hope you can get home soon though obviously Grin x

Original poster
MultipleMama · 15/01/2014 14:19

We'll try again, next week :( disappointing as it means one step closer to home but if he's not ready then I'll wait as long as it takes!

I agree, Berlin is beautiful and the people I've met are really friendly. There's this cafe I go to on a morning and there's this lady who works there 5 days a week, she knows of Apollo in hospital and always asks of him when I order my Decaff coffee to go. The first time I met her she patted my hand and said "these German babies, always big brave fighters. You'll see." It made me smile.

I've had enough of window shopping though! Already bought a Bugaboo buffalo (staff helped me assemble it!) - even though Artie is always strapped to my chest! No idea how I'm going to get it home... Hmm

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FraggleRock77 · 15/01/2014 14:35

MMama, such a long process and you've already been through so much. Hang in there. Keep drinking the coffee. You are doing an amazing job by staying so strong xxx

Original poster
MultipleMama · 19/01/2014 18:32

Hello, ladies.

Tomorrow, they are attempting to wean him, the last bit onto CPAP. His pacemaker has made it so much easier for him, and is no longer on 100% oxygen. His gases and stats are really good. No signs of infection, he had a fever on Friday but they adjusted his morphine (something to do with tube irritation, that caused it??) and it came right back down within the night.

He's very alert but would prefer if people left him alone so he could continue to sleep. He gets very stressed easy and if you move out of his eye line, you'd think the world ended with the way he screams! I get my first of him on Wednesday and I really cannot wait.

Artie is progressing well and she was signed off from the Pulmonolgist, this morning! :) She now makes serious eye contact and constantly rolls over. Yesterday, I put her down change Apollo, I then hear her starting to stress, I look down and she had literally rolled off the mat and got stuck with her head and leg stuck under the chair! Hmm

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