I am worried sick. My sister has been taken to hospital as she is losing fluid. She is only just 24 weeks

[Pinkchampagne]

She has had a stressful pregnancy. She has had bleeding problems from the start but every scan has showed that baby & placenta is ok. She is now just 24 weeks and has been losing fluid since 1pm today. She says she can still feel it moving around.

I am out of my mind with worry. The baby will be too little to stand a good chance of survival.

Thinking of your little nephew, I hope he and your sister are doing OK.

DS was a prem (although not as early as your nephew) and there were a lot of ups and downs before he came home.

Fingers crossed for the little boy xxx

thinking of you all, and really hoping that your little nephew continues to fight. x x

(((Pink))) Thinking of your little nephew every day and praying for you all. xxx

Been checking in from time to time, hoping for somer good news. Just wanted to add to what others had written - thinking about you, your little nephew and sister.

Thinking of you all xx

My sister has just been on Radio Kent telling her story.

My nephew is still on cpap but is managing the odd half hour off it before getting tired. My sister has been warned that he will probably have to come home on oxygen. He was 4 weeks old yesterday & they say he now officially has chronic lung disease as he is still on full oxygen after 28 days. He is putting on weight well though - he is now 3lb 11oz!

Thank you all for your thoughts and good wishes.

hi pink putting on weight is great little wee one is amazing isn't he. I had lung stuff as a baby and am fine now so hope he goes from strength to strength x

They have said the only way his lung disease will get better is by them growing, so my sister is willing him to get bigger!
They have been told to expect to take him home on oxygen.

Thinking and praying for you all

Good news on the weight gain! Keep going little one :)

Just spoken to my sister - he is 3lb 13oz today!

:) that's good going.

So glad he is doing well, and hopefully your sister too! For a long time in NICU progress seems snails pace but it will pick up at some point and then all of a sudden you're home! I think an awful lot of premature babies are diagnosed with chronic lung disease, and it sounds far scarier than it is. Not all of them go home with oxygen, though of course some do. It does improve over time, as lung tissue renews and the lungs grow bigger. Although this can take years to do, if there are no other health problems then it may well not rear it's head again as far as you are concerned. My DD went home on oxygen after not quite being able to kick the habit, and although I was scared stiff at the prospect it was actually relatively straightforward. Hook baby into oxygen and voila, get on with life as normal just trying not to trip over the cables! You can still go out and about and even swimming if you feel up to it, the only real no-no is candles or naked flames. Also, if that does happen then they will get regular community support which can be quite reassuring after the ordeal. But that is in the future. There were quite a few babies who were "certainly" going home on oxygen that didn't at the last minute and vice versa the nurses were really surprised that my DD did in the end-so there is no exact predictions until the last minute. They will try to keep the levels down as much as is healthy and if they don't get him off then it is advantageous as it will effectively give him more energy to grow in height and weight, improve his immune system and cause mischeif.

Really pleased to read he's gaining weight :)

Great to hear his weight is up Pink! Lovely to hear your DD's story amymouse

Thank you for sharing your story, amymouse. It is good to hear from someone who has experienced taking a baby home on oxygen. They have now moved my nephew out of his incubator as he has reached the 4lb mark! so they have been trying him on a few hours of low flow oxygen. He had to have another blood transfusion on Sat, but other than that he seems to be doing quite well atm.

I'm another one who has been following the thread - the little one seems to be a fighter (and a grow-er). Please pass on warm hugs and well wishers from all of us to your sister (and save a few for yourself as well)

Glad to hear he is growing so well :)

Congratulations on reaching the 4lb mark little man!

he is doing so very well :) i too took a 27 weekere home on ozygen when he reached 32 weeks, he is now 11!

Hi Pinkchampagne, I've been a bit of a longtime lurker on your thread and secretly willing your sister and nephew on. I am so pleased to hear how well he is doing.

As amymouse wrote ^^ lots of prem babies have CLD and it's not always cut and dried as to which go home on o2. A friend of mine's son has been on home oxygen for the last four months and it hasn't stopped them doing anything. Of course, they long for the day it goes but they'll be damned if it's a hindrance.

Also, blood transfusions were a dime a dozen for Gen! I think she had about 16 or 17 and the last one was about ten days prior to discharge. I used to like them in the end, we always saw a huge improvement in Gen's oxygen requirement and she just seem happier afterwards!

Wishing your family all the luck in the world. 4lbs and out of the incubator - fabulous news :)

Good to hear more reassuring stories of babies coming home on oxygen. My sister sometimes has a look at this thread so it will be good for her to read these posts.

Great to hear from you, BadNails! You were in a very similar situation to my sister, weren't you? How is your little girl doing now?

Hi Pink I have been lurking. My DS also came home on oxygen. We went everywhere with it, they gave us little portable cylinders to go out with. he kicked the habit after a few months and he's never looked back.

Happy to answer any questions about it if your sister has any. Fingers crossed he will be home soon.