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.

I'm glad you have updated I've been looking every day. Hope you are feeling well yourself. Sounds like they are getting the best care, it's a bumpy ride but they are in the best place and all this will seem a distant memory when they are home. I bet you're shattered, make sure you eat and drink lots!!

Big love xx

Just an update: Apollo had his last does of surfactant this morning, he's starting to take more breathes (with aid from the ventilator) so they gave him one last does to encourage him but still struggling due to his PDA. His eye infection is proving to be a pain and his now developed a mouth infection, so they're debating whether to attempt to move his tube to his nose instead of his mouth to help or leave it. It's one step forward and 3 steps back at the moment.

Longest week of my life, I'm tired and constantly on edge. I'm sleeping really well and I've recovered fully from the vag birth. Even my appetite is back to normal, I've even started running again. But being dealt bad news almost every day is draining me.

Thank you for the support ladies xx

How is Apollo today? I bet you feel exhausted. Glad you are trying to look after though in the circumstances x

There's no change. His breathing has improved slightly but he's really sucking in that chest when he's breathing in. His alarm went off this morning, twice, one fluid in the tube and the other because his stats had dropped but he's stable.

I've also been informed that if the doctor agrees, after their rounds this evening, I can have my first official hold!! :)

Tomorrow Artemis is being moved to SCBU :)

First cuddle will be lovely It sounds positive and like others have said one day at a time x

Oh lovey you guys are doing so well but thats one tough week. Apollo will get there he just needs time to beef up. Dd had a pda that went undiagnosed til she picked up an infection on the unit - she too missed the ibuprofen window and it played merry hell with her sats but it closed itself by discharge. I hope those infections feck off. Sending hugs and positive vibes.

Thanks, plenty and poppet :) I hope they feck off too. He's already lost 4oz in a week :( He's down to 1lb 5oz :(

It's been approved, got the phone call at 6pm. In about 15 minutes we're going to get our first cuddles with Apollo. So nervous as he's still so very small but we're so excited! Just stepped outside for a quick breather. DH is currently having Kangaroo care with Artemis while I have the first hold.

I hop

Held Apollo for an hour last night so magical and scary! He's so tiny including his head! Talked to his doctor today and they're going ahead with the surgery next Thursday. Very scared!

Artemis is now in SCBU and latching for even longer! :)

That must have been a special moment! Hopefully he will just keep getting stronger a week is a long time and once the op is completed I'm sure he will go from strength to strength.
Glad the feeding is going so well too you are foing so well. Hope you have a calm weekend x

Just an update:

Artemis is now in an open cot on SCBU and is getting better everyday, she's latching well but very impatient and can only suckle for a few minutes before having a tantrum. She's also off oxygen during the night.

Apollo had surgery on Thursday, he flat lined but managed to get him back quickly, other than that no more complications. He is breathing a little better but still relying on the ventilator for most of it. He's not sucking in his chest as much which is a great sign. His sats have improved and so far so good. The bleed on his brain has lessened but he still has an eye and mouth infection. Had no more cuddles but I have seen his beautiful eyes open for me :)

And on it goes...

Thank you for the update. It sounds like a very stressful time but the outcomes are worth it. How are you coping with it all?

Thanks for the update, you've all been in my thoughts. Glad to hear Apollo came through the op well. Have everything crossed that he will continue to gain in strength and you get more cuddles soon. If it is any way reassuring my son had two brain bleeds and both self sealed in the end and now at 10 months there's as yet no indication they caused any damage. Glad to hear Artemis is latching well, my son was the same, once he could suck he would get so impatient as if he knew he only had the strength for a few good sucks so he would get impatient and fussy. What helped him was me staying overnight ( I was in hospital myself so they just pushed me downstairs I realise this may not be a practical option for you) he got used to having to suck for every single feed and as his strength grew so did his patience.
How are you doing in yourself? Take care x

I'm doing okay, well I was until a nurse mishandled Apollo when changing his covers which caused his head to drop back. We're finding it hard to trust them and I'm completely paranoid now. It only happened yestetday so we're still shaken up quite badly.

We have no idea if it's caused any injury to his neck or back but we noticed today he has bruising around his neck. He is to have an x-ray tomorrow afternoon at our insitance. And he has a MRI scanned booked for Wednesday (to check the bleed on his brain but to also have a look for developmental changes as he was born with symmetrical IUGR which can cause more problems).

Tonight is my turn to stay overnight. Just nipped out for some fresh air before I head back up to feed Artemis then read to Apollo.

I want this week to be over.

Oh my goodness that's awful! I'm not surprised you feel shaken up. I spent half a year in nicu I can imagine how distraught you must feel. What have the hospital said?
I'm sure Apollo finds your voice comforting, as I said reading to my son gave me huge comfort. I have everything crossed that the X-Ray is clear and the MRI shows improvement. He sounds such a little fighter. As does Artemis.
Thinking of you and sending strength x

That sounds awful you must feel very anxious and tired. Have you spoken to them further about what happened? x

We had a meeting this morning at 10am but due to stupidness on there part was posponed til 12pm. The nurse has been given a verbal warning and is no longer allowed any part of Apollo's care at all. She's been assigned to SCBU until they decide if/when any further action is to be taken. We've made it clear she's allowed no part of Artie's care while she's there. The nurse apologised but then went and said it a simple mistake and we were overracting because were emotional due to have preemies. I was furious. Frankly, I don't think her "punishment" is enough. She could have seriously harmed my baby and all she's recieved so far is a slap on the wrist!

I don't know what to do, I don't know what my rights are as far as complaining goes, nor do I know what kind of reprimand she can get. It's just a mess. A part of me just wants to let it go and concentrate on my babies but on the other hand, I don't think it's fair to let her off

Thanks, ladies. It's wonderful the support I'm receiving on here xx

Morning, how are you all doing this morning?
I don't know what they can do either but I know you can make a formal complaint in writing which they then have to respond to formally and explain their reasons for whatever consequences they decide. It may help you to do this?
Hoping apollos x ray today is clear. Thinking of you all.
X

Evening. Apollo's x-ray came back clear; no breaks or fractures. He has quite a bit swelling and bruising to his neck but they're sure it will heal but he's on a no hold ban for a few days so we don't aggrivate him or causing him any more pain. So they've moved his MRI to Monday morning.

Thats good to hear x

Thank goodness! You must be so relieved. How are they doing today? And you, are you managing to get any rest? X

I'm so relieved! Frustrated and upset as well because now I have to wait even longer to hold him. I've held him once since he was born and it's awful. DH and I are doing good, he's so optimistic that he keeps me sane. Don't think I could cope on my own.

Other than that he's doing good. His mouth infection is clearing up but still has the pesky eye infection. He's dropped another 2oz in weight however they said next week we can try his stomach on breast milk! :)

Artie is doing so so well. Very proud of her. She's taking milk like a pro, sleeping well and is a very happy baby. So easily entertained by sounds. :)

Just came on here as my hubby asked how "the twins with the god/goddess names" were doing :) glad he's got through the op, that must be a big weight off your shoulders. I think you have grounds to make a formal complaint on the other matter, but if he has come to no harm maybe a warning for her is enough? It'll be on her record as long as she cares for babies and will probably not get another job easily. That said, until they are both safe at home you don't need clumsy nurses making your situation even more stressful. Hope you're looking after yourselves and I've got everything crossed for a smooth journey from now on xxx

Aww that was nice of your DH to ask about them. It means a lot the support we've been getting. DH comes on here every now and then to read all your replies. He thanks you all.

We've talked to the head nurse and told them if she receives a verbal & written warning then we won't go for a formal complaint.

I think that's it. It's stressful enough without the nurses we trust to care for them being clumsy.

Morning how are you all this morning? I'm glad to hear You have decided a way to move forward regarding the nurse that your comfortable with.
Great news that Apollo will be able to try milk soon. That made a huge difference to Alex, he was barely maintaining weight until he was able to have milk. I hope it's the same for Apollo. How's his neck now? Do you know when you will be able to have another cuddle?
Thinking of you x

Just a quick update while I'm sat in the canteen.

Apollo's eye infection is finally showing signs of getting better but they don't know if it's caused any damage to his eye so they're bring his eye test forward to the week after next when he'll be 5 weeks old. If all goes well, I can have a hold when we try him on breastmilk in hopes that he will associate me with finding. Hus hair has grown so much too. When he was born he had a mop on his head but now it's brushing his the tops of his ears! His neck is brightly coloured and has tightened around his breathing tube due to swelling but that should go down with time.

Artie fed for 15 minutes today before she fell asleep during. However the next time was just a few minutes. She likes to keep me on my toes. Her hair is longer than her brother's but a lighter shade more brown than black. She had her hearing test today and was such a trooper! She's one step closer to home :)