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.

Hi yes I found it helped hugely. I was so scared of making a mistake or telling the dr the wrong thing that I literally wrote every thing down. Was incredibly useful I found.
Plus now he is older it's a nice record for him, which was something I didn't think of at the time but he loves reading it.

I didn't think of that either!

I've just ordered a Erin Condren life planner, so that I can mark dates and events throughout the year along with a note book for his medical notes :).

Was it easy to give him the medication? Right now, his medications are given by drip or gtube.

What progress! You are both amazing. Our DS is currently on reflux and constipation medication, which i know is very basic in comparison. However we keep track each day by writing with wax pencils on his bottles as a prompt. Easily washed off after and appears to be reducing any mistakes. He has also had calpol by syringe which we give directly into his mouth. I do like the idea off keeping a daily record though but for us our system is working x

Today has been crazy. I have never seen as much paperwork in my life for one small baby. It's a God job I love the little 'roid baby because my wrist is killing me!

Today, A's team confirmed and signed off on his transfer and our local hospital have confirmed there is a bed waiting for him!! They are 100% confident that he his well enough and stable enough to make the journey on Friday where he'll be put on SCBU!! :) :) :) Happy and so proud!!

DH dealt with business side of it I rarely left the hospital and guiltily let DH deal with it - he said it was quite a lengthy process due to discussions and debates and then having preassessments etc. The overall transfer was great but DH said he wouldn't use them again due to the amount of time it took for them to agree and then want to go over things again. I know they wanted to be sure and make sure he was stable etc but DH found it draining. We didn't have to push for staff, they were included with ours. Every case is different, hope you get the transfer! You can use my story but no names :) good luck!

• DH didn't like the service but they were lovely to me during pre medicals etc.

Sorry for the crappy replies and not being much help, I'm still running on zero sleep and nerves are fried as A is getting prept for transfer.

Apollo is doing great and has now officially upgraded to SCBU. He's still on a radiant warmer and high flow plus meds but he's doing so so well! :)

Also, I think Artie is wanting to crawl! I know she's prem and only 8w adj but I swear she is. She has mastered rolling over and has good head control. Yesterday, she started bending her legs kinda like the army crawl. She's doing it again, today. I don't know if it's a phase or what but it definetly looks like she's trying to kick/push (?) Her legs. :) :)

That's so fantastic - well done Apollo and hurray for SCBU! Another step closer to home... And what a superstar Artie is too.

Well done Apollo! Genuinely am thrilled for you all, he is amazing.
About the meds my ds1 had most meds syringed into his mouth, he hated it to be honest but I found distraction helped. Me cooing loudly or shaking a rattle while slipping the syringe in his mouth. Being able to tolerate his meds orally was something that delayed us coming home for a couple of days as it was absolutely critical that he was getting them. The O2 was no problem. I just had to record when I had changed the tube etc.
He had chest and abdominal dressings which were by far the worst part, I hope Apollo doesn't have them, my ds screamed when i had to change them but I found fast and quick was best then straight onto the boob!
Artie sounds a little champion. Alex crawled very early but was so small he looked like a frog kicking frantically. maybe Artie will be the same.
X

Yeah, I think the oral meds might be what holds us back too. They let me try once, he just screamed and pushed it out his mouth. So I may ask to see if we can practice it more instead of leaving it too late. SCBU has checked and said he will be going home on oxygen so as of tomorrow DH & I will be trying to put the d-twins into their own nursery for the 1st time, they still share a cot so hoping it's not too stressful...

Did you have a concentrator? Was it loud? No idea where we'd put it as Apollo will be co-sleeping while Artie will be in co sleeper next to DH.

Okay, starting to panic now. So much to do.

I think asking to practice is a good idea. I found slipping the syringe down the side of his mouth worked best, needed to avoid the tongue thrust and scream of rage! That and frantic distraction worked eventually. And different size syringes may work better than others, I tried several different ones to see what worked best. I also kept a pot of Milton as the syringes need to be sterilised, I found it much easier than boiling water every time.
Yes he had a concentrator, it was definitely audible but I wouldn't say loud and I got used to it hearing it quickly.
Hopefully it won't disturb too much.

Oh, good. I can put it in the corner of room then :)

He really hates the syringes, so I'm gunna try the dropper and then maybe the medicine pacifier or bottle.

A is also suffering side effects from the steroids (has to take them for his heart). He's very fussy and very cranky. He get's frustrated very easily especially during feeds, he's hungry constantly - and screams until he's fed or nursed. He's also sensitive to light. :(

First night away from him in over 5 weeks, I hate it already :( :( but seeing my kids and giving them hugs and hearing all about their adventures with DH and Grandparents is worth it. I've missed them so much! x

I hope you got some sleep :) it is impossibly hard but I bet your other children loved having you home. My 16 and 6 year old slept in with me for a month when I finally made it home.
I used a goats milk cream the hospital were trialing on his skin, he was very sensible to the light and developed terrible eczema when he came home. I was told to try to avoid any chemical anything if I could, which I always thought was ironic considering the amount of drugs I was pumping into him.
Again the good news is he's 6 now and has no issues at all
X

We use organic products anyway. We use a baby brand from GreenPeople.

The Doctor's believe he may be a sensitive baby either caused by the steroids or born that way, so they're doing a few tests to be certain. He was moved into his own cubicle this morning where light and sound are dimmed and already I can see a difference in him. They'll be testing his skin later and how he reacts to certain touches.

I did the bedtime routine with the DC and promised I'd be there in the morning. I got them up this morning but spending them morning with Apollo and then DC will takeover while I explore the village and town with the DC :)

Will be nice to get into a routine! :)

I hope you get what you want! :)

Apollo is doing very well, he is feeding brilliantly and is much calmer due to his new surroundings, his vitals are good and they are hoping to wean him onto low flow later this week which is very exciting :) He is now off the radiant warmer and into an open cot!!!!! :) :) :) but he does have to have an extra layer of blankets. He is maintaining his temp very well and they are optimistic that he will be home this month.

They say soon, I may be able to discharge him for the day and take him home to have the experience, obviously no overnight stays but they say we'll work up to that too. :) :)

So pleased with Apollo's progress. My DS was born in Sept at 30wks gestation. He now weighs over 11lb and its amazing how far he has come. He was such a skinny little fragile thing initially.

I remember how it seemed like we would never get him home and how relieved we were to be transferred closer to home.

Apollo has just passed the 5lb mark but he's eating loads, he still doesn't fit in newborn clothing and barely fits in the preemie sizes but he's improving so much :)

Oh what nice news to read. You must be so pleased/proud xxx

I'm sure he'll start piling it on really quickly soon, the 5lb mark is a real milestone. So happy for you

Apollo is one step closer to low flow! He's on the lowest amount for high flow so tomorrow will be a big day! :)

Apollo has been on low flow since 8am and has been doing so well, he's had a few moments of stress but cured who cuddles from mama and vava :)

If he continues to do well I can take him for a stroll around the hospital on Monday to see if he copes with a new louder environment :)

Low flow? Wow, wow wow that's a huge step. Congratulations thats Wonderful news!!!!

Thanks, we are very proud of him and it's one step closer to bringing him home. :)