Need words of support for a family coming home

[Guest guest]

Dear Beloved CHARGE Family-

So exciting, a darling baby boy with CHARGE is ready to come home. The

equipment has already been delivered to the home: O2, feeding pump for

continuous feeds into his Gtube, and potentially a heart monitor. Lovely baby

has had a sleep study on 16th June to assess oral secretions, CO2 emissions etc.

The parents have had a trial night with their beloved son at the hospital to

find themselves getting no sleep at all - perhaps an oversensitive monitor - but

alarms ringing every few minutes. The mom is understandably feeling overwhelmed

and concerned about meeting the challenge of the monitors and her baby's well

being. Natural anxieties any new mother has - augmented by the previous weeks of

" critical care " in an NICU environment. Parents are delightful, adoring, highly

capable and resoundly intelligent - with the self-awareness to already know what

sleep deprivation will ultimately do to them....

Any words of support, encouragement and support would be greatly appreciated-

Practical point - can alarms ringing through the night create a situation of

medical necessity whereas an insurance provider might be persuaded to provide

home nursing?

Thank you all in advance-

Yuka