Very poorly 25wk preemie twins. Reassuring stories please

[KatieA18]

Hi all. I am posting to look for advice, help or to hear stories of similar situations to what I'm going through.
My twin boys were born at 25 weeks and 2 days. They are now 6 weeks old (31 weeks gestation). They weighed 511g and 844g.
One of my boys had NEC and had to have emergency surgery on his bowel. As a result of this, he has become very edematous and he looks like he is going to pop. They have told me today that he is very fragile and the next few days are vital to him. He's on blood pressure medication, still on the vent requiring lots of oxygen as his lungs have a collapsed. They are giving him diaretics to help him wee to try get rid of some of the fluid in his body. But they don't know what's going to happen to him.
My other son was doing well and was on CPAP but is now back on the vent as he's also got NEC and may need surgery like his brother. I don't want the same to happen to him. They both are very septic and have PDAs.
I am so scared and I feel so helpless. I feel like the end is so far away and there is no light at the end of the tunnel.
Please tell me your stories so I can be reassured there is some light eventually.
I know its going to be one long road and I'm preparing myself for them to be in hospital until next year.
Thanks so much

Hello my twins were born at 32 weeks so quite different to you but when we were in the hospital there were babies there who were born as early as yours and were preparing to go home after a long hospital stay. The best advice I was given was to take it one day at a time and not to focus too much on what lay ahead, they told me at the start to not expect to get discharged before the actual due date and that helped me not get disheartened when I saw other babies leave to go home. Things with tiny babies can change so quickly, so one day things can look grim but be so much better a day later. Take care of yourself as it will be a long and stressful time, but the care tiny babies receive these days is really excellent.

I have no experience of this but wanted you to know that you and your boys are in my thoughts.

I’m so sorry you and your dear boys are going through this. My 600g baby had NEC and suffered terribly with oedema after surgeries. She also had a lot of other complications. It was extremely distressing to witness. I hope it gives you some hope to hear that she eventually made it home and is now happy and healthy. Hang in there. All you can do is love them and get through each day. Just in case you’re not already in touch with Bliss, it provides excellent support and advice. Wishing you all the very best

Hi,
I had twins at 24wks. William sadly passed away soon after being born but Max ended up in NICU. He didn’t have NEC but he did have multiple other issues, he was on the vent for a long time and had sever bilateral IVH grade 3 and grade 4. I was told he would be severely disabled with multiple issues. It was so hard at the time to deal with and the only way I got through it was to forget about what might or might not happen in the future and literally just deal with whatever you are faced with each day. That’s all you can do. It’s so scary and if you start thinking about all the what ifs, it’s a never ending circle of anxiety. It’s wasted energy, much better spent doing what you can for your babies in the unit and dealing with whatever you are presented with that day.
Max is now a thriving almost 5yo in full time mainstream school without any severe disabilities, he’s got some mild physical issues we are currently receiving support for dyspraxia. We did access a lot of services early on and I really pushed for all the support I could get in many areas which I think has helped him to do so well.
If you have any questions or want to just off load to someone who’s been through it then just message me xxx

Oh my goodness you’ve got a lot going on. I’m a mum of 29 weekers twins who spent three months in NICU, so I feel for what you are going through. These boards are really quiet but why don’t you join “parents of preemies support UK” on Facebook, it’s a private group with loads of parents & support. I do hope your twins are okay xxx

Sorry you had so little response on such a difficult post. It's more than 2 weeks since you posted. I really hope you are ok and your boys are fighting through. Thinking of you.