I’ve been meaning to write a bit about what it was like to have an oxygen dependant baby. My son Harry came home in August 2009 on home oxygen. I have the following gems of wisdom to impart to anyone who may be interested.
One thing I wish I had done was ask a nurse from the NNU to call us at home a week after Harry was discharged, just to see how we were getting on. I did feel a bit cut off when he came home, after having had so much support from the nurses it felt strange to suddenly not be getting any. I would also suggest staying in touch with other parents who are in the same boat as you. I did this and it really helped, otherwise I would have felt very isolated. The thing which really helped me get through the time Harry was on oxygen was getting out and going to groups, just to get a bit of normality. The majority of the other mums were sensitive about Harry’s condition and I made some lovely friends by doing this. I even took Harry swimming when he was still on oxygen, I used to put his cylinder in a small rubber dinghy.
Be prepared for good and bad days and insensitive comments
The thing I used to hate about having an oxygen dependant baby was the insensitive comments, the worst of which was ‘what’s wrong with your baby’? My response to this question was ‘nothing, mind your own business’. The positive side of this is that it does thicken your skin. Somehow worse than that was the people who would just stare and not know what to say. My reaction to them was to just stare back at them.
Harry was on oxygen for over a year. This presented many problems. One such problem was when he started rolling as he would get tangled up in his wires. The only thing to do about that is to just keep a very close eye on him. Also, always make sure that the portable cylinders you are given are not leaky before the delivery man leaves. Lastly, make sure before you go anywhere that your portable cylinder is set to the correct flow rate.
Finally, don’t let it get you down, just keep thinking that you have your precious baby and everything will be OK. 🙂