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.

Apollo is having a bit of 'roid rage. Well I think so or he's a very fussy, demanding baby. He had breathing steriod treatment yesterday, not ready for CPAP but going strong.

Question; It seems I've caught Kvothe's snuffles. I have stuffed nose, slight cough, and non stop sneezing. Do I avoid the NICU and what precautions should I take with Artie?

Glad he's doing well.
Tbh I would avoid the nicu if you are sneezing/coughing to be on the safe side, although ask their advice, they may ask you to wear a mask I remember one of the other parents did. My eldest ds had chicken pox a week after I bought Alex home, I called my dr and he said after a preemies due date to take only the precautions you would with any other baby.
X

Bless you that's hard, of course you want to go in. I'd probably stay at arms length and wear a mask. Also, make sure Apollo is getting your current milk as you'll be making antibodies
I'm sure they will tell you if you need to keep away.

Thanks ladies. NICU have adviced me to stay away until the worst is over. Apollo has really bad lungs and his immune system isn't that great so even though they want his system to improve they don't want to risk him catching RSV however they did tell me about the milk so DH is bringing in fresh everyday for Apollo and any other mama's who want it.

It's awful being away but the kids are keeping me insane and Artie doesn't like sneezes, they startle her haha.

I'm all stuffed up and looking like rudolph. My nose itches like mad and the sneezes don't stop. How unpleasent would it be to give birth mid cold?!

Hi multiple.
Colds are a pain. I hope you feel better soon. Xx

Thank you, hope I do too. DH feels guilty that I cannot visit but I'm glad Apollo has DH with him Especially today as Apollo had a set back and had to have bots of breathing steriod throughout the day. DH also bathed him for the first time, I think DH feels left out sometimes so I think he's enjoying all the one on one time with Apollo :)

Artie is doing well, so proud of her. She's put on 6oz in a week! :)

Apollo is on CPAP. I repeat Apollo is on CPAP!!!

They pumped him full of steriods and breathing treatment but he weaned himself in two goes. He struggled at first, his gases were awful and he had so many Brady's they started to worry but once he was on my chest he started to settle and accustom himself to breathing in and out for himself but he really took to it. I am so very proud.

He now only has one chest drain. His lungs and heart are responding well to treatment and more of his personality is coming through. He's fussy, hates being disturbed or handled when sleeping or relaxing. He's a very light sleeper and he hates bright lights.

Artie is such a different baby. Very laid back if she's not in carrier she's very happy to lie on her mat and stare at toys or lights. The kids always want to give her kisses so we've told them to kiss her stomach as not to spread "germies". They love and she loves the attention.

A very happy morning! Xx

I have been following this thread, both you and your dear babies are amazing. Really pleased to hear your wonderful news.

Wonderful news, well done Apollo! Such a huge huge step forward I'm thrilled for you all.
And Artemis what a little trooper.

Wow what a day. Well done Apollo! My lovely boy had it easier but I remember very well the happy day when he kicked the vent. I'm sure you have been warned he might wobble but every hour without it is an hour of healing and getting stronger. Amazing.

Glad to hear they are both doung so well x

This is great news, mama. Well done, Apollo! Wishing you and him lots of peaceful, boring, steady progress x

Apollo is now 3lbs!!! Apparently he's a greedy eater! Doctors are pleased by his progress. He had a wobble this morning and had to be put on IPPV with prongs but few hours later was back on CPAP.

Ladies, is it possible to bf with CPAP and g-tube through the mouth? X

Wow, what progress. You must be so pleased. I was googling breast feeding positions for prem babies earlier and i spotted a YouTube clip of a prem baby in the US being taken off CPAP to BF. Not sure about the tube though but could be taken out for you to try i suppose? Our DS fed with an NG tube in. Good luck x

Just a quickie to say hell yes it is! My DS struggled to kick the CPAP habit and we started bfing with it in place, and OG tube.

Awesome, well done Apollo!

Celtic - Thank you. Glad to know it is. They've said they'd like him stable on CPAP so to give a few days to a week then they will bring in the LC to help start things off. He is showing signs and we've dabbled a few drops in his lips every feed and he looks to respond. How difficult was it? How did work around the bulky CPAP stuck to their face? So desperate to try with him :)

Ah lovely Your unit sounds so pro-bf! I had to push quite hard.

Yes it is awkward with all the equipment but not impossible. I can only recall doing the regular cross cradle hold but if I was supporting a mum now (am a peer supporter at my unit) I'd maybe suggest trying the rugby/underarm hold too, might be easier. You sound like a very confident bfer though, I'm sure Apollo will be a natural. I remember DS's first feed well, it was magical.

Ahh, the Rugby hold, my trusty companion. I still do this all the time with the twins when they're tandem feeding :) I'll talk it over my his nurse and see what they say. Thanks :) x

With dd they moved the og tube to her nose for bfs not sure what they'd do with cpap too but am sure you'll crack it. Dds first proper feed was just magic. About 5 docs and nurses came in to cheer her on as they'd never seen such a small baby bf (not a big bf area here at all). I was so proud of her!

He was on IPPV first and then CPAP so his tube had to be moved because he fought against having it back in his nose and the with the CPAP it made it difficult so he's much more happier with it in his mouth. It won't be until next week but they're great here with bf so really looking forward to it :)

Talked to Apollo's care team today and it's agreed that we can try latching with Apollo next week if his stats remain stable. And as of tomorrow he will have breathing treatment weekly as he's still struggling more than they'd like. After arguing my point to the Doctors and being pretty stubborn, when Apollo is bf he will be fed on demand when I'm there main reason being, they feed him every 2 hours but not enough in my opinion as he seems to get stressed/fussy/restless about half an hour after which can last a while if I'm not there (I do kangaroo care so he calms down/falls asleep after much comforting from me). When I asked them to increase it and see if it makes a difference, they point blank refused saying his stomach won't be able to handle it and may cause him to have reflux which annoyed me as they wouldn't even try but luckily Apollo's daily nurse agrees with me and backed me up when we I demanded it change when bf starts.

Sorry for rant, today has been full of medical terms and consultants. Urgh.

Well done Multiple. One of the hardest things about NICU is being an advocate for your babies, sounds like you are doing that admirably. You know him best, never doubt it.

Artie is 8lbs can't believe how bloody fast she's growing! Such a long way from her birth weight of 3lbs 1oz!

A'lo had his last chest drain taken out and is x-rays look clearer and the bleed on his brain has finally absorbed and is bleed free for the first time! :)

What fantastic news. Both little fighters. You must be so proud x

Very proud. Apollo had another arrest so was given more steriod which has made him such a 'roid baby! Cries at the slightest things, like a nurse sneezing... He is really struggling with his lungs despite his improvement and moving closer to having time off CPAP, he's having to work for it.

Very tired and in need of sleep!