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Louisajane27 Mon 17-Mar-14 07:27:55

Hi ladies I hope you don't mind me posting hear as technically my little boy is not premature (born at 37 weeks) but he is very sick, small and staying nicu. Basically he was delivered early at 37 weeks by c section due to poor growth and other health problems. He was born weighing 4lb 11oz, he also has an enlarged heart, liver and brain damage due to a possible stroke! There not sure what has caused all this but are running tests and suspect a possible metabolic disorder. He is 6 days old and currently on 30% oxygen and being tube feed. My head is all over the place, how do you ladies do it? How do you stay strong with a little one in nicu? I was discharged from hospital Saturday and hate that he's not near me anymore, any help or tips would be great, thank you.

manfirstual Mon 17-Mar-14 08:00:51

Congratulations on your little boy and sorry you are having to go through this. I don't have direct experience of the situation you describe, but my DD was kept in hospital for 16 weeks. It is mentally and physically exhausting, if you have anyone to help then accept their help - making a meal, hoovering the house, giving you a lift, etc. We found it truly was two steps forward, one step back and you need to be aware that several good or bad things can happen in one day. Good luck

minipie Mon 17-Mar-14 17:11:24

Hello, of course you can post here and sorry your DS's arrival has been so difficult.

In terms of practical tips here is what I found helped me when DD was in NICU:

- I phoned the ward every night to ask how DD was doing, this really helped in the middle of the night.
- I spent lots of time at the ward every day (10+ hours a day), this helped me as I felt I was doing all I could for DD (even if just sitting there) and it meant I also got to know the nurses who I was "leaving her with" iyswim. Of course this may not be possible if you have other DCs.
- I expressed milk, again this may not be possible for you but it helped me feel I was doing something to help.
- To help me stay at hospital for the day, I was offered use of a "rooming in" room so that I could nap sometimes (as was up in the night expressing) and keep food in there - it was very helpful. You could ask if there is a spare room for you to do this?

- This may not be your approach but I found it helped me if I simply did not speak to anyone except my immediate family (DH and parents and in laws). There were lots of messages and cards but I didn't feel up to conversations about how DD was doing when we didn't know the answer. You may be the opposite though.

I agree with manfirst's suggestion of accepting help, and also the fact that several good or bad things can happen per day. It is a real rollercoaster. If you are given information about your DS's condition, my advice would be to wait until you have the full picture before you google/panic (we often scared ourselves unnecessarily by jumping straight to google, only to find we had misunderstood or the problem went away in a day or two...).

I hope your little boy does well x

Louisajane27 Mon 17-Mar-14 20:23:42

Hi, thank you so much for all the help and advice. Lots of really good tips and suggestions which I am going to use. Your right its a real roller coaster, I'm feeling much more positive today but I realise I just need to take one day at a time. Thank you so much again both of you for all your advice, it has helped a lot. X

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