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.

Thanks, Ias, DH watched and says you have an amazing little boy and a warrior of your own. Too raw for me to watch at the minute but I will at some point.

They tried to wean him today without steriods and onto CPAP but it backfired. He had a massive cardic arrest which took 5 minutes to get him back and his sats went crazy. I have never been more terrified in my life. I was hysterical and DH was shouting at them out of panic. It was a crazy morning. I am glad to say however, that he's stable and tomorrow he'll have his first dose of Steriods.

Artie is doing amazing and is such a brilliant sister. She's so quiet when were with Apollo, she's happy to laze on my chest :)

Oh no there are no words.....thank goodness they stabilised him. What a fighter he is. And well done Artemis, I'm sure having her close will help Apollo.
I can't post as frequently it's chaos here but I'm thinking of you often and cheering Apollo on.
I also used my ante natal thread as a diary and printed it all out for Alex to see when he's older, to understand his journey and see just how many people were desperately cheering him on. I think it's a lovely idea. X

Laspalmas- I just watched your video, hope that's ok and am crying-what a amazing boy you have! Such a fighter. Your sons have amazing eyes the colour and life in them just shines out, beautiful
I have pics from when Alex was born but I can't even bear to look at them yet but they're all put away to show him one day. (He was born 24 weeks to the day)

No parent should ever ever have to see that. I've seen Hugh in respiratory arrest too many times to remember, with sats in the teens and terrifying heart rates. I totally understand the feeling of looking on totally surreal and then it kicks in.

Apollo is so so strong and so are you. I can't imagine what it must be like having to be strong for both of them, and all your other children too. I found it very hard with one in the unit and one at home.

People often asked me how I coped and the honest answer is, sometimes I didn't. I don't know which unit you are in but I'm guessing its a big tertiary centre with lots of support for you guys. Make sure you take it. On some of the really dark days, I found the units counsellor and family support workers an invaluable resource to let some of it out.

I'm thinking about you guys a lot and really hope the little guy is given a break. I used to feel like that about Hugh, he just needed a few days of stability to just get on with getting stronger. Hopefully the steroids will give Appollo that same chance.

Thank you Mama1980. We've still only been home 6 months after a year long stay. It's taking a while to put all the pieces back together and adjust to our new normal but I'm getting there. I just know how amazingly lucky we have been in all this and, albeit there are some days I don't like my new normal, I am eternally grateful x

The hospital has been amazing the Child Life specialist has been an endless supply of advice of hope not only to the kids but to me and DH. She has scheduled visits at home so she can intetact with the kids and help them adjust so we don't have miss anything due to RSV season. The support workers and a great source when I need to chat. I'm ususally a private person and prefer to talk to DH but as we're both involved it's nice to talk to someone unbiased.

Apollo had his steriod dose this morning which sent his gases crazy and caused a Brady which triggered another arrest. I couldn't even hold him because every time we tried it triggered a massive Brady. It was awful so besides treating him, I couldn't hold him and it broke my heart.

Apollo is looking more lively today, he's still dealing with lung issues in both lungs and had to have a chest tube put in his left side so now he has 3. He looks more aware, if that's the right word, you touch him and talk to him and he responds. So happy.

The twins had a bad night last night, Dieter was calling out for me so tonight we're swapping. I'll be staying home and

... and DH will be staying overnight at the hospital for a while.

Thats great news that he is more aware you should be positive about that Try and get some rest but I know how torn you must feel when you have little ones at home. Remember it is a small part of their lives so try not to feel guilty.
Ds had his bday party today and it amazes me how far he has come from his early start. Hope you all have a peaceful night.

Greta news that Apollo is more aware, makes a huge difference, and a great sign he is gaining strength keep fighting little one!
How is he today? Were you ok staying home last night? I know it's awful when you're being pulled in different directions, so hard to know what to do for the best. X

He's doing well and so proud of him. He had more steriods this morning. I think his body, though doing him good, doesn't tolerate the steriods well. He's had different doses and all send his sats crazy and cause Brady's which settle within a few hours. Tomorrow is a big, big day; they're going to try him on CPAP. Fingers crossed!!

I was a wreck last night. I had Artie for close comfort and got lots of extra hugs from the kids. The Child Life Specialist was great she came round and helped explain why mama isn't home much. My 5 year old, Kvothe, said to me, "Halo poorly so he needs your hugs more. Don't be sad, okay. I love you always!" So massively proud of how they're handling all this.

Artie misses her brother. Although she's easily settled and quite placid, it takes her awhile to fall asleep. She fights it but at the hospital as soon she's touching Apollo she drops right off. I think I got a smile today or maybe it was gas!

Ah well done Artie.

Crossing everything for Apollo tomorrow. Hope it goes smoothly and he copes well. Come on little one!

Good luck today Apollo. You are doing a brilliant job mama. It's amazing how just an hour of proper one on one mummy time with your others is worth weeks, months even to them x

I have definetly missed my kids. So we did loads of arts and crafts for Christmas to put on the tree (we're moving after Xmas so having a small tree and paper decorations). The kids loved it.

Apollo arrested again this morning around 6am which DH called and told me to get there now. I arrived about 7 and he was in the middle of another arrest this time due to a changing his diaper. Plan awful.

However they used this as their chance to try him on CPAP while his sats were still crazy. He didn't take to it :( but I can proudly say Apollo is now on IPPV!!! :) (with nasopharyngeal tubes rather than short prongs).

He's on the highest amount of oxgyen and has another chest tube which was put in around 9 but despite that he is responding well to the oxgyen and the meds and I can see his mouth for the first time! :)

Oh bless you MultipleMama you are amazing to be so positive after a scare like that. Well done Apollo, little steps! Good news that he is responding well. Saying a prayer for continued progress.

Just an update while the kids are eating and Artie is sleeping.

Apollo hit the 2lb mark today! Which is a massive milestone as he was always losing weight rather than gaining despite the increase of his b/m. Onwards and upwards!

We also were called in for a consultation with Apollo's cardiologist today and received some pretty big scary news. He's concerned about Apollo's heart and all the stress it's undertaken, (he has an innocent murmur & irregular heartbeat) so he wants to discuss the option of a pacemaker to be fitted when he's 6 months (actual). AKA when his body has had some time to recover and strengthen.

I have no idea where to start... research wise.

What a lot you have to cope with. If it was me, I would deal with what's right in front now and worry about the cardiologist later. It's really a lot to think about with so much on your plate. I'd ask them to discuss it with you when he's more stable.

As an aside, we were told once that DS had an enlarged heart because of how hard it had had to work and they would keep an eye on it. It was never mentioned again and nobody was concerned by the time he was discharged. One step at a time...

Wishing Apollo a night of peaceful progress.

Thanks, Celtic. We're going to try and collar him tomorrow so we can discuss it. DH and I talked, and like you said, Celtic, we'd rather not talk about it now. We want to avoid surgery as much as we can, and as a last resort. As of right now, his heart rate is slow & irregular and he's on medication to help. I know his Cardiologist means well as Apollo's heart isn't coping too well but against his advice we'd rather wait and see and discuss it again at 6 months. It may get better on it's own.

Artie is such a greedy feeder tonight! :)

Morning how's Apollo today? I hope your chat with the dr goes well today. Great news that Apollo is gaining weight, weight is strength and off the full vent is amazing
My eldest ds who was born at 26 weeks (different medical issues though to apollo) and needed 3 operations on his heart before he was 18 months. If I can help with any questions please feel free to pm me, I'd rather not discuss in too much detail on the board.
Thinking of you all x

Just a wee line to say I'm still thinking of you all. Strength and hugs x

Nothing much to update. The past 2 days have been uneventful. He's had his first bath, I'm back doing kangeroo care with him as often as possible, he's feeding really well no reflux issues are showing. His gases are still unstable, still have Bradys mainly when being moved but things are looking good. He cried out loud for the first time this afteroon, it was weak and wasn't very loud but it's the first time we've ever heard his voice. So proud.

Artie was weighed today, she's now 7lbs 2oz!! :)

No news is good news

Wow first bath what a milestone. And good trooping on Artie. Still thinking of you all.

Today is the twins due date and whereas I doubt I would have made it this far anyway it is a little reminder of what should have been.

The twins are 9 week old today and I am so proud of both of them and we look forward to all the weeks and years to come :)

Happy due date Artemis and Apollo. What amazing babies.

Delurking to say happy unbirthday!! You have amazing children who have amazing parents... such fighters and so much love that screams out from all of your posts. Wishing you much happiness and many milestones to come.

Just checking to see how Apollo and Artemis are doing? Still thinking of you all and hoping no news means slow and steady progress x