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.

[MultipleMama]

Apollo and I are about to embark on a stroll around the hospital and yard for his series of stress tests! :) This must be done so they'll have an idea if he and us are ready for day release! :) Cannot wait to show my boy the world outside the unit! :)

[Mama1980]

Wow amazing! Way to go Apollo :) x

[FraggleRock77]

Brilliant news. I hope it goes well, keep us updated? What stress tests are they offering you???

[MultipleMama]

The portable tank is a PITA! I think my stress test is how to cope without throwing the thing through the window! Cannot wait unil I the backpack to put it in (currently have the nurse holding it!)

It seems that we may have to take the nebulizer wherever we go as loud noises make him extremely distessed and causes his BPD/asthma to flare up.

From this morning we've found out that loud noises (ranging from cafe crowds to children screaming to sirens) and bright lights (inc sunlight) are his main sensory triggers, he comes easily agitated and stessed (his heart rate goes up quite a bit) and without nursing he is very hard and difficult.

He is however very fasinated with birds and leaves - I even let him hold a small leaf even though my mind kept saying "GERMS GERMS GERMS! GET HIM INSIDE." We have noticed that aside from sirens and passing crowds etc he is more calmer.

He is now milk drunk and on the verge of passing out. Artie has been a good girl for the nurses and she too is passed out :) I will be allowed around the hospital later without a nurse but I just have to jot everything done! :/

[MultipleMama]

Today was stressful yet wonderful. Apollo passed the stress test, only just but they're happy with us and hapy with Apollo. So, on Wednesday we get to discharge Apollo for the day! We haven't told family as we plan on just letting the DC get to know him and have quality family time :) xx

[MultipleMama]

My gorgeous babies are 19 weeks old today. Were has the time gone?!

[FraggleRock77]

Time does fly! Good luck with the day leave tomorrow. I bet you can't quite believe it!

[MultipleMama]

Had a great morning will Apollo home. It was perfect. So blessed to have him home! :)

Then around 1.30pm it went downhill when he started screaming - nothing would settle him, had to give him a nebulizer which helped for all of 30 minutes before he started screaming again, his breathing became labored and he was turning a bit blue. Called the SBCU and was told to bring him straight back to the ward or call for an amublance. We decided to go to the ward - he is now on cpap :(

After talking to us and the timeline matching up turns out he had a severe reaction to some perfumed shower wash I used and caused a massive asthma attack. We've been told to avoid all perfumes scented candles/air freshener/shampoos! Basically anything fragranced that could come in close contact with him.

Hoping to switch back to low flow either today or tomorrow... sigh.

[MultipleMama]

They believe he may have a perfume intolerance which with his sensitivity to all his senses has just basically clashed and caused a flare up ofvl his BPD which was made worse by his screaming and triggering an attack. A combinaton of everything making a domino affect.

[MultipleMama]

He's back on low-flow since yesterday evening, thank God, and back to his old self. We'll try again Friday and hopefully we can have him home ALL day. DH and I have decided to have huge clear out. The baby/children products are all organic fragrance free anyway, so DH and I just need to watch what we use and change what household products we use to fragrance free. We've just gone with the theory, "change everything to be on the safe side", which means we now have to put in place visiting rules. Such a PITA.

The supply company came this morning so now my house is full tubing! All the people who need to be notified about oxygen in house/car have been notified. It's starting to feel scary now!

I was also given a date; on the 18th of this month, Apollo will be officially coming home!!!!

Artie is doing amazingly well, as for her army crawl she is now, lifting up high on her arms and managing to tuck her legs under but still hasn't figured out how to move forward from there but she's close! But this past week she has been sitting unaided :)

[FraggleRock77]

Really good to hear the positive update. What amazing little babies. How old are they now? X

[MultipleMama]

They are 19+2 weeks old, or 10+2 weeks adj :) So proud of them!

[MultipleMama]

We get to have Apollo overnight on Monday. I cannot wait! :)

[FraggleRock77]

You must be excited/nervous all at the same time. Artie sounds like she is doing amazing, our DS is 6 Wks adj but just lays flat when put on his front! X

[MultipleMama]

Very much both. DH is more nervous! As I've spent more time getting accustom woth Apollo.

Artie had a clinic appointment today and therapist is amazed by her and is pleased with her progress. He said when he saw her last she was acting almost like a newborn at 1-2 months old but now he says she's caught up some of her development and is acting more her actual age rather than her adjusted age. He is over the moon with her and doesn't want to see her until she's 6mo adj now :) xx

[MultipleMama]

We have a discharge time! He will be discharged at 3pm tomorrow! Cannot pick him up today until 1pm due to Doctor's round and quiet time. We have to go back to the hospital in the morning which is pretty silly but we have to fill out more forms and get his files and meds, then they want him hooked up to monitors until he's discharged.

Excited!!! :)

[MultipleMama]

Big day today!!

Apollo is napping and Artie is playing with toys while I files mountains of paperwork! Eek.

[NewToAllThis11]

How exciting! Best of luck with everything x

[FraggleRock77]

Good luck. Fingers crossed. Xxx

[MultipleMama]

Thank you! He's now home and milk drunk :)

[WhatKatyDidnt]

That is fantastic news! You must be so relieved and happy. You are all amazing, resilient superstars.

[Supershiv1]

Crikey multiplemama, I've been off the board for a little while and look at you! At home!
I remember reading your thread early on and thinking this little one will be in hospital longer than my Oliver, but he wasn't! Well done. Xx

[MultipleMama]

Thank you, Shiv! I thought he would be too but they seem to think he's well enough and strong enough to come home, originally they thought he would be in until June! But he proved them wrong :)

He will eventually need one possibly two more surgerys before the end of the year.

How is little Oli doing? It's lovely to hear from you.

[plentyofsoap]

Congratulations x

[Poppet45]

Oh such brilliant news. You've waited so long and all fought so hard for this day. Treasure it and your amazing family. Its still a long road ahead but ou've climbed the steepest hill now. We're all so proud of you!