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.

[Mama1980]

I looked earlier she's beautiful what's star! You must be thrilled. I'm so happy for you all.
How's Apollo doing? Am cheering you on little one x

[MultipleMama]

Well, that lasted long... she's back in the sling but on DH and is sleeping once more. Her cry is like an owl screech! However she seems to fall asleep quickly which can only be a good sign.

A'lo is still setated they hope to lower the dose either tomorrow or Monday to see how he copes. Since being setated he's still had a few Brady's but never as many as before, and his stomach looks to be shrinking though he still has red patches all over. Hoping for the best.

[zoesmum2012]

I've been watching this message but never said anything but after allyourve. Been though. Am holding dd that bit close stay strong mm ur such a fab mum x

[Mama1980]

Both of mine loathed being put down too. Hope she sleeps well, I found ds stayed in that rough 2'hourly routine for a long while despite me aiming to just feed on demand, they just demanded every 2 hours The consultant told me it very common for ex nicu babes to do that apparently.
Great that there are some tentatively positive signs with Apollo, I have everything crossed tomorrow he copes well. X

[MultipleMama]

It seems she wakes every hour! Although you're right on the 2 hourly feeds. Luckily we're co-sleeping using a snuggle nest and it's easy to reach her. Back to sleepless nights... although the twins themselves are still waking every 2-4 hours! Do you want one of my twins?

Thanks, Zoe. I longed for hours to hold me daughter for hours without a time limit so hold her close as much as you want!:)

[Mama1980]

Thanks but nope, I have my hands full here I also co sleep it's the only way to get any sleep!
Did Apollo have a good night? X

[MultipleMama]

We co-slept with boys til they couldn't fit in the snuggle then they slept in the co sleeper beside me. Now they still share a cot in our room. They're very predicatable during the night so we don't feel the need to move them yet.

Apollo had another another scare last night, his heart stopped. My dad is a superstar and came round at 3am so we could rush to the hospital. When we got their they had managed to get it started again, twice. Apparently his sats dropped, and then his heart just went. I never wanted to leave this morning, I was so heartbroken, I keep thinking what if he goes and I can't say goodbye. I'm a total mess. I want to be at the hospital but I can't/won't abandon Artie. I have no idea what to do...

[CelticPromise]

Oh that sounds so difficult for you. Is there any parent accommodation in the hospital? I wonder if you could stay there with Artie while Apollo is so ill? I hope he turns a corner and you have a peaceful night.

[Mama1980]

Oh love I'm so sorry to read more bad news, I've been there it is indescribably awful. The feeling of helplessness is just the worst. There are no words I know but I am here to listen and am thinking of you. Have you any way to stay closer to or at the hospital with Artemis in the circumstances?
Desperately hoping Apollo has a peaceful night and gains strength. X

[plentyofsoap]

Same as the others I hope tonight is easier on him and your family x

[MultipleMama]

Thanks, ladies. I don't know if Artie will be allowed. Apollo has a (gram negative) bacteria strain which took to his lungs. DH is staying overnight and we have meeting tomorrow to sort something out. One of the doctors referred to him as "Baby A" this afternoon instead of his name which DH and I were furious over. I think they don't believe he'll make it... oh god... I dont wanna lose my baby

[Preciousbabies]

I check your thread v regularly and am so sorry that you have had such a difficult time. I really hope Apollo pulls though and that you and your family are looking after each other. Stay strong x x

[CelticPromise]

It doesn't matter what they think. Lots of us on here have been told the worst and come through the other side. One of DS's consultants (amazing woman) told me early on that babies who are loved do better. So tell your DH to talk to him, read to him, sing to him, just so he knows he's there. I'll be thinking of you all and saying a prayer for Apollo.

[Mama1980]

That's awful of the drs, I would be angry too.
As the other ladies have said drs don't know everything. Alex was given less than 20% survival odds before he was even born, yet here we are. I'm certain it will help Apollo to have his dad with him. Sending strength and willing Apollo to hang on. X

[Supershiv1]

Hi Mama.
I've just seen this thread & can relate so much to what you are going through. If you get a chance look at my post in this forum. I had a baby boy in April and had terrible lows (including surgery, bleeds, cardiac arrests, vent dependence, pulmonary hypertension. .......I could go on) but ultimately he is coming home tomorrow - nearly 7 months on.
For whatever reason boys do seem to struggle more than girls in the nicu.
I spoke to the reg who was on the day he was born today, she just stared at him in wonder. She said she never expected him to make it he was in such poor condition - but look at him now.
We were told terrible things and witnessed even scarier things without having others to look after. Believe me you are doing remarkably well.
Believe in your boy and don't loose hope.
Well done on getting Artie home so quickly.
I'll keep checking this thread to see how you are.
Siobhan xxx
Ps where in the country are you?

[MultipleMama]

Thank you all for the support! Just a quick reply while the house is quiet.

Celtic - DH loves to sing to him, always the same song mind. If nothing else, Apollo will grow up to hate that song cause he's heard it so much! (Ed Sheeran's lego house) whereas Artie is stuck with his dreadful Danzig impression :) We have K on tape reading on of his books so as K would say, "Halo knows he has a big big brother."

Mama - They're such little fighters! I bet Apollo would kick my butt for even thinking the worst when he's fighting so hard. .

Shiv - I will admit I have been a lurker on your thread, visiting now and then to see how your LO is doing. So very happy to hear he's coming home! I hope I can take strength from your journey and force myself into gear and be brave for my boy :) I live near London but moving to Germany at the end of the year which is exciting :)

[Mama1980]

I'm sure he would my eldest now doesn't believe me when I tell him how sick he was. I Have everything crossed for good news. X

[Mama1980]

How is Apollo this morning? Thinking of you all x

[NewToAllThis11]

Am thinking of you too, mama. My tiny DS was very poorly in the first 3 weeks of his life with infections. It is an awful time, but you sound very strong. I really agree with what Celtic said about babies feeling their parents' love and it making them stronger and I remember one of DS' consultants saying the same thing to me when he was really ill (perhaps it was the same one). It really helped me at my lowest point. Xx

[thomasmad]

Hello mama,
Have been following your posts. Have also had twins in NICU. Hoping that the next few days are more positive for you. Thinking of you.

[MultipleMama]

Will reply while Artie is sleeping.

Had the meeting this morning, and something has been sorted. I am allowed to bring Artie with me (discharged twin - they called her...) so we're currently staying in one of the parent rooms. Which is a huge relief! Someone on another thread suggested putting her in with him but after bringing it up with Doctor's out of curiousity they we all agreed not to. a) he's in critical condition and they can't risk exposing him to more than they have to. b) they don't want to risk her health.

Apollo is constantly monitored, Artie can't come with me during quiet time, which means I stay with her in parent room. He's not to be handled unless it's necessary. Tomorrow he is having a transfusion due to thrombocytopenia caused by his infection.

Artie is doing so so well. Feeding like a dream, and is happy to lay in her vibrating bouncer for naps instead of on me :)

[Mama1980]

Hi, glad something is sorted out so you can be there. How is Apollo this morning? I hope the transfusion goes well.
Well done Artemis- what a superstar. X

[MultipleMama]

Apollo's transfusion went well, though had a setback when his heart stopped while moving him. Was brought back quickly but still scary. MRI came back clear of damage (minus the grade 2 he already has).

They're testing him again tomorrow to see if the infection is responding well. If he gets 4 negatives in the next 4 days then he can come off the antibiotics.

[CelticPromise]

Well done Apollo, keep going little one. Still thinking of you all lots.

[Mama1980]

That sounds mostly positive, what a amazing little boy you have there :) Fingers firmly crossed for negatives and more good news tomorrow.
How's Artemis been getting on today? And how are you doing?
Thinking of you all x