I love the monitor..not

Enya is still taking caffeine to stimulate her respiratory center. Since her discharge from hospital in December we have even had to increase her dose (she was supposed to be growing out of the dose). I find this a bit worrying as I have yet to find another micro preemie blog where the baby was discharged still needing caffeine, oxygen yes but none on caffeine (update:I asked on a preemie forum and found a couple of other babies that also needed caffeine after discharge- we are not alone!!). Until we are rid of the caffeine we need the monitor and how I loathe the thing. Even if one ignores all the nights of interrupted sleep due to false alarms, it is still a constant reminder of the hell that we have been through.




When Enya first came home she was constantly cycling (sats going up and down), particularly after the 2 am feed and there was nothing we could do. She was discharged from hospital without oxygen (the desats are of short enough duration that although they set the alarm off, she still maintains an average saturation of over 90% measured over an hour) which meant we just had to stand by her bed and watch helplessly as the sats rose and fell again. Thankfully increasing the caffeine seemed to partly remedy this, she still desatted (and still does) but less frequently and the period under 85% saturation is often so short that the monitor doesn't alarm.

Interesting side note: when we increased the caffeine the Prof (head of our neonatalogy unit) said the caffeine wasn't doing anything for her and her breathing as she was older that 44 weeks. We could take her off immediately without any ill effect but to keep her on until we see him at the end of Feb. However we noticed a distinct improvement in the cycling and the frequency of the alarms once we had increased the dose. See the big guys don't always know everything.

We have stopped connecting the monitor during the day with the agreement of our paediatrician, as we've discovered if she is awake and moving the monitor doesn't read properly-e.g. she was throwing a wobbly and the monitor was reading sats of 50%. When I held her leg still suddenly her sats were by 96%, when I let her leg go back down around 50%. This does not inspire confidence in the monitor!! I contacted the company that supplied it, to find out if this is normal or could it be faulty, their advice was to put the sensor on the big toe- hello this is a 4 kg preemie we're talking about, how do I fit the sensor (made to fit on an adult finger) on her big toe??? Also if I carry her with the monitor on it starts to alarm due to the movement of the cables!!


I still "plug" Enya in when we drive anywhere, not that we've been further than the doctor or the hospital in the last 2 months, and that is the worst of the monitor. When we're driving the monitor alarms almost continuously. I have tried Enya in the car seat at home attached to the monitor and her sats are mostly above 95% (she hates the car seat if we're not actually driving and starts thrashing around so her sats do drop due to the movement) but driving is dreadful. I can't definitely say it is due to the vibrations when we are driving as when we are stopped at traffic lights it sometimes continues to alarm. For this reason I still connect her when driving. that said I hate driving alone with her as my heart sinks every time it starts to alarm because as mentioned before apart from taking her out the car seat I have no options.

On the plus side we have an appointment with the prof tomorrow and I know he will say stop the caffeine. So we could be getting rid of the caffeine for good or I could be in for a stressful few days with no sleep until we restart the caffeine. Wish us luck!