Needing a hand hold - baby in NICU

[jitterbug5]

Feeling thoroughly fed up today and just need to write it down.

DS was born at 34+4 16 days ago. His heart rate was sitting too high and was dropping occasionally. They found a huge clot in his renal vein which was stopping flow to his kidney and his legs and a mass above his adrenal gland which they told us could either be a haemorrhage or a neuroblastoma. Thankfully it turned out to just be a haemorrhage - lesser of the evils. He's currently on IV treatment for his clot which when reviewed a couple of days ago did appear to be smaller in size and the flow to his kidney was better which is great. The next plan is to get him on injection form blood thinners and eventually bring him home.

The thing is we have a just turned one year old who has come down with a cold this morning. Just a standard cold, but he feels rubbish. My parents and sister have taken him out the day today (bless them) and I've just burst into tears when they took him because I feel so crap that both my kids are poorly and I just want to look after them. I don't understand why it's this that's tipped me over the edge but now I'm in bed crying because I just want my boys home and healthy 

There really isn't any point to this thread. I just needed to write it down. I think I've been running on adrenaline and it's all just hit me. I'm so fed up.

for you op.

My ten week old twins were born at 34 w
Weeks and spent five weeks in NICU. It is unbelievably hard.

Hope your boy is home soon.

You poor thing. I think you're right about it being one thing after another and it just being too much. It's so stressful when you're dealing with each medical issue as they come along and you're just focusing on each one as they come.

I have no useful advice, other than sympathy and best wishes. 

@Lipsticktraces bless you. 5 weeks must have been so so hard. I really hope your twins are doing well - it's such a scary time 

@Lipsticktraces oh the above is me. Once again I forgot to name change 

@AssassinatedBeauty thank you so much. I've dragged myself from my pity cave and I've ran myself a bath. Sometimes I think I just need a good cry to feel better. I haven't really cried much throughout the whole thing so it just creeps up on me I think. Thanks so much for your reply 

I’ve just got my little girl home after 18 weeks in nicu, if there’s anything I can do to help or any questions please give me a shout. It’s such a hard time but you’ve got this x

Bless you-I bet you're absolutely knackered as well. No wonder you feel like that today. Just wanted to offer a handhold and a big bundle of strength to carry you through the coming weeks.

Oh bless, I hope you can bring him home soon.

Having a good cry is good for you, it releases endorphins and releases stress.

I’m not surprised you cried when they took DS1 out for the day. It’s natural to want to be the one to look after them when they’re not well and the fact that someone else has DS1 and DS2 is in the hospital you just feel unable to do what you need to do for your boys. It probably hit you hard because DS1 is only little and already adjusting to having DS2 and now he’s poorly and blah blah blah...it goes on. And on. The pressure (from yourself) and the guilt...on top of the worry and exhaustion... tears were inevitable.

It feels like forever when you’re in the middle of it, but hopefully DS2 will be home soon and you can get on with looking after your boys and enjoying them together 🌷

My daughter was in for 9 weeks. She turned 11 yesterday. It's so tough. Really hope he's home soon xx

I also had twins in NICU - born at 27 weeks.

They're 13 now and with the benefit of hindsight, my experience is that it's perfectly fine to cry / shout / whatever feels right. It's such a hard experience, a real rollercoaster. Sending a big hug.

If it's any comfort, the staff in NICU are the most knowledgeable, caring medics I've come across and your DS is in the best hands

Aw god love you. I hope you get some sleep tonight.

It sounds like you have a wonderful family around to support you. I hope you get your baby home soon xxx

Thinking of you and your teeny baby and snuffly toddler 

You've got a lot on your plate just so allow yourself some time to yourself, to cry, rant or post here for support/company

I don't have any experience of having a poorly baby, but I cried like a baby when DD had 3 nights in hospital and an Op and she was 10! I think you're doing amazing!

That sounds incredibly difficult. I hope both boys are better soon and home with you.

My babies were in NICU for 2.5 weeks and I know how blooming hard work it is. Everyday is difficult but your baby is in the very best place they can be. Remember to look after yourself, have a good cry too. You'll all be home soon x

DD was born at 28.weeks and was in NICU for 3 months. It is scary but as previous PP said the staff are brilliant.

I don't think you realise at the time but the stress is huge and you sometimes feel it's never going to end.

I totally get the feeling of wanting to be there and care for them. I remember feeling terribly guilty when I was so shattered from travelling to the hospital twice a day that I didn't go for one evening session.

The relief when she came home was amazing.

DD is now a lively 11 year old and although she has some SN I always think that she is our little miracle. I'll always be eternally grateful to the staff for what they did for her although at the time some of it was hard to take.

Wishing you all the best and hoping he's home soon.

Ah, I wasn't expecting so many lovely replies. I'm currently sat up with said poorly 1 year old having a cuddle and I had another little cry at you all being so nice.

We had some positive news that DS2 should start his injections on Monday so we are one step closer to bringing him home! I needed today to cry it out and all you lovely people so thank you. Just need to keep reminding myself that this is all temporary!

Poor you hope everyone is fighting fit and home soon! Hang in there xxx

We had 4 months in NICU and also had 2 other children to care for - it is such an intensive, consuming experience. Absolutely exhausting. DS2 has just turned 19, tall, handsome and kind and off to uni in sept. You'll look back in the not too distant future and see how well you've done keeping it all together!

This may be an odd hand hold. It I think it's good news that you've had time to cry and worry about the 'bigger picture' when lurching from one crisis to the next you dotn have time to worry about it all you're too focused on the moment. The fact that you've been able to worry about it all (although it's horrid) hopefully means all is looking a bit brighter. I hope that helps and I hope both DC are home soon.

I had a baby with a blood clot - I’ve pm’d you.

for you OP! Hope DS can come home soon and your one year old feels better.