106 days in NICU with 24wk twins and counting..

[greenjojocat]

I'm currently 100 miles from home staying in a Ronald McDonald House near to my twin boys who were born early at 24 weeks. They are now 106 days old and have been through a number of operations and treatments in the time that they have been in NICU. They are both awaiting operations now, one for hernias and one for stoma reversal.

I'm not sure what I'm asking for but I'm really struggling with support as its so difficult to talk to friends and family about how I'm feeling. I have my husband with me and he's been fantastic but I just feel so guilty and useless that I can't do anything to help my babies. I'm expressing which I hate because it's takes so much of my time and I'm so far away from everything and everyone that I know that I just feel so lonely.

I wanted to know if there is anyone else out there that has been through a similar situation because I could really do with some words of reassurance right now.

Oh you poor thing.

I have no experience of what you are going through, but I am a great listener.

Are the boys gaining weight well?

How far is the Ronald mc house from the hospital or ward?

Do you want to tell us their names?

Lots and lots of love. My arm is around your shoulders. X

Oh my goodness, what a horrendous situation for you.

Have you contacted bliss? They do a buddy system where you'll be matched up with someone who has been through a similar nicu journey to you, it may be nice for you to have someone who understands to talk to and maybe someone who is close to the hospital would be good for you?

My little girl was prem and in nicu, but not micro prem which I appreciate is a completely different journey.

Reach out and grasp all the help you can. Tamba might have some support threads for you as well?

Thank you both. They are gaining weight well, my eldest was 560g at birth and he's now 3.3kg. The house is very close to the ward, we can be there in 5 mins if we need to be which is a comfort. We've just gone past the point where we have regular visitors and texts asking how we are but if I do get messages then I feel like I need to give a positive response even though things are incredibly difficult.

I had already registered with TAMBA but I should contact their twinline for some guidance and bliss is another good suggestion, thank you.. 😘

Wow, he was so tiny what a trooper to have gained all that weight. You must be glued to the expressing machine! In years to come you'll watch a Mr tumble episode with the twins where they show cows being milked and you'll feel a sudden affinity with cows everywhere!

It's good that you've a decent olive to stay so close, are you managing to get any time out for you off the ward. I know it's hard to even think of it, but maybe trying to squeeze in a hair appointment or something just to make yourself feel a little more like you?

I think bliss can also offer information re finances as such a long stay obviously has an impact.

I get what you mean about the texts and support waining off, people just seem to forget after the initial chaos.

Do you have any idea of when they may be discharged or even transferred closer to home?

what kind of support do you think would be helpful?

Do you need a kind ear, someone to cook, some time at home, more independence for the boys (less nurse care etc). Maybe try to have a think about what would make life better.

Do you have an iPad? Could we recommend a good book?

Do you have a date for their operations? How are you feeling about them?

You don't have to answer any of my questions. I don't want to place any extra demands on you. Just thought they might be thought provoking.

Here is a link from the bliss website to see what support is available near you...www.bliss.org.uk/page/map/near-you

The helpline for bliss

0808 801 0322

One was supposed to have an operation yesterday but unfortunately he's picked up an infection so he's been poorly today and it will be put back to next week maybe. We've now found out that my other one should be having his operation tomorrow so fingers crossed that will go ahead.

I was in a desperate state last night and this morning but I feel slightly better now. It's so hard being here when everything changes so quickly. You can't tell anyone what might happen because you're then worrying other people and if plans change you have to contact them all to let them know and face a load of questions. My parents are finding the whole thing very hard because they're not used to us being so far away and everything I feel about being useless they feel too.

The support is more an outlet to tell someone about what's going on! We try to get away from the unit from time to time but it's not easy leaving the babies behind. I've done a lot of reading today about premature babies and the bliss website, it's definitely helping. Thank you for listening..

I completely get that feeling. It's all so out of your hands isn't it.

Glad that you're getting in a better place today. The nights, especially when you're up on your own expressing are definitely the worst.

Feel free to tell us what's happening, rant or just generally talk rubbish,

Where abouts in the country are you? Have you had people bring you some home comforts?

And if it helps, my sister in law was in a similar situation (28 wk twins due to twin to twin transfusion syndrome), she set up a Facebook group, invited the people who she wanted to and put all the updates on that to save her having to give updates to different people all the time.

I've been there (stoma and all) with my DD and my heart goes out to you. She spent about 4.5 months in various hospitals. It's incredibly hard and isolating because it's simply impossible for anyone who hasn't been through it to understand. I too struggled with communicating with friends - boiling down the enormity of everything into a single text was never going to happen, so replies would be simple and positive when often the reality was anything but.

Utilise any psychological support that the hospital offers. Write things down if it helps (my one regret from that time is not keeping a diary). If there are specific practical things that you would like from friends or family, ask. Hang in there and be proud of the strength you have summoned to get you to this point.

Thanks, it's really good to hear from someone who understands what NICU life is like! Luckily my son who got the infection is doing a lot better but the operation didn't go to plan for my other son and it will take him a lot longer to recover than expected. He's back on the ventilator which is horrible to see for a bigger baby.

I did set up a what's app group to update people in one go but I'm even finding that hard to update nowadays. If I don't have good news then I don't feel I should tell people anything. Generally, they are doing a lot better than when they first arrived but theyve had some real problems to get through. If I sound too positive then people just ask when they will be home because they don't understand why we're still here.

I'm keeping a diary and the unit has a counsellor that I see once a week. Although she's been away for 3 weeks which maybe hasn't helped my madness!

I'm sorry the op has been more complicated than expected. Was this the stoma reversal? My DD had a terrible time getting over hers due to various complications and it was one of the hardest times for me, as I viewed it as the last hurdle and previously she had been doing very well. She got there in the end.

Great news about your other son's infection.

Bliss may be able to help with some telephone counselling while your unit counsellor is away - worth a shot.

I didnt want just read and not reply. I know how hard a NICU stay can be. When my DD was born she spent a long time in NICU and it can be bloody hard to be so far away from home and your normal comforts. Try and get out a little bit easier said then done I know. I spent almost everyday sat in the awful chairs in NICU. If you need a chat/rant you are more then welcome to message me. I know it's hard but you are strong.

Hi green
DD spent 3 weeks on NICU after an operation on her bowel, was then discharged and is now back on the peadiatric ward with problems- so nowhere near as long as your lovely boys but it's all been a very odd and experience- NICU is like a world apart where time runs completely differently, each day seems incredibly long but then they disappear incredibly quickly.
I can totally relate to hating expressing some times, i found it took over my whole life and I although we're now mixed tube/ bf I still obsess about how much ive managed to get off! I also found that I just wanted to be with her all the time as it was the only time I felt vaguely 'normal' and able to think. And yes giving updates is hard as its constantly 2 steps forward and 1 step back and although everything is going in the right direction it's a long process!
I've been doing cross stitch as a low focus thing to do as anything involving much concentration doesn't happen!

I have considered taking up knitting!

DS1 had the operation to correct his hernia but he had to go back for a 2nd op after 7 hours because of a bleed. DS2 is still waiting for his stoma reversal and we've been told today that he might get on the list of the end of this week. He's been doing really well today and is happily sucking on his new dummy.. 💙

He's lovely
The ups and downs are exhausting enough with only one child. Hats off - you are a true supemum

Gorgeous! Hope DS1 is feeling better and DS2 gets his op soon.
Are there any bliss groups / parent volunteers near you? Our nearest group is now shut but I did chat to a parent supporter who was great to talk to.

Hi OP. My twins were born at 27+6 so not as tiny as yours, nor as long a stay in NICU so I really feel for you. We had 61 days before they came home which felt like a lifetime at the time - so nothing in comparison. You and your boys are doing amazingly well.

I kept a diary, wrote little messages to the babies, wrote letters to friends, and that really helped me (certainly looking back in the diary to see how much progress they'd made on the hard days helped me enormously and I've looked back on it several times since just to kind of come to terms with everything that happened). Knitting sounds good too! Can you maybe get access to a laptop so you can Skype or if you have an iphone - facetime?

I also recommend Bliss, I didn't find it until we came home but later joined a group and it helped. I also had one "favourite" midwife on the ward - who made time to speak to me. Is there anyone other than the counsellor that might help?

We're now 170 days and DS1 was discharged from hospital 3 days ago. DS2 is still very poorly. He's recovered from his operation really well but he keeps having apnea episodes and I've lost count of the number of times he's been resuscitated, many in front of me. I'm absolutely shattered and don't know what to do. I don't feel happy even though one is well enough to live with us because I'm so scared I'm going to lose the other.

Oh green. Sending all good wishes to you. It's great that DS1 is home. I do hope DS2 turns the corner soon. It's a bloody hard slog isn't it. Keep going, you will get there.

Sending your way.

I am 28 weeks pregnant with twins. One has just been diagnosed with IUGR and I am have twice weekly scans to monitor things. Have been warned they will be premature and spend time in NICU. I am terrified.

Hi jojo I'm really pleased you have one baby with you and I'm willing the other boy through ok! I can't imagine how hard it must be. Are you still at the same hospital? Thinking of you xx