Hello there - congratulations on the birth of your son, and welcome to the strange, scary and stressful world that is the NICU.
I have to be brief as we have to pop out in 2 mins, but hopefully I can come back soon and say more.
My first child, DS1, was born at 24+1 and weighed 620g. When he was born he had "bad for gestation" lungs, he had a total body infection (sepsis) and lots more problems. They did not think he would survive. He had two brain bleeds - IVH grade 4 on the left side, grade 3 on the right. At that point the hospital asked us to sign a "do not resuscitate" order because they thought he was so unlikely to pull through. The doctors told us all sorts of horror stories about what he could be like if he survived - bedridden, deaf, blind, epileptic, severe cerebral palsy. Looking back they were telling us the worst case scenario, but at the time it felt like they were telling us it definitely would be like that.
Well, my boy held on and fought and fought. He got off the ventilator after 9 weeks and a whole lot of steroids. He had a PDA ligation (heart surgery) when he was 5 weeks old and only weighed about 800g. He suffered a collapsed lung too, had hernia operations and lazer eye surgery to correct ROP. But he just kept going. Over time he put on more weight, which helped him fight infections as he picked them up, and which helped his lungs to grow and his breathing to improve.
He came home at 5 months old, and was on home oxygen until he was 2 years old (the second year was night time only though). I was very worried about his development, and I was always looking out for signs of problems. We had speech therapy, physiotherapy, and lots of other input. We even paid for a private developmental consultant (who was fantastic).
Fast forward 4 years and I have a happy, bright, cheeky little boy who is going to school (nursery class). You would not know he had such a difficult start. He does have a few "quirks" - he is undersensitive to pain and temperature, and white noise can freak him out - and he did not say a single word until he was 3 years old (we were learning sign language and everything). But he kept getting better and better, and has defied all odds. Believe it or not, he is 2 years AHEAD in numeracy and literacy and can actually read even though his corrected age is 3 years 8 months. OK so he's not potty trained yet and can be a bit "young" emotionally, but these things will even out in time.
I just wanted to share so you had a similar story with a good outcome. Not all babies have good outcomes, but the majority do. Do you know that when they talk about "disabilities" as a result of prematurity that includes wearing glasses!!
There is so much you can do for your son as a parent. Breastmilk is fantastic, it offers loads of immunological benefits as well as being ideal nutrition. Sitting next to him, talking to him, comfort holding or kangaroo care when he's well enough - all of these things will help your son's brain develop. He needs to be cherished and loved, and everything else will come with that.
Noone can tell you what the future holds, but having a loving mum will give him the best chance possible, and you will be amazed how far these tiny babies can come. Their brains are so young that they can re-wire around damage which might kill a full term baby. We really have miracle babies!
I would second the advice to have a look at the Bliss website - go to the help for parents section and look at the message board or see if there are any groups in your area. I run a group on a hospital NICU unit and a sister group for discharged families, there are lots of them about.
Good luck, and I hope your little boy keeps fighting and getting stronger.