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[quote=Anonymous]Our daughter was born several months ago with a tumor that makes it difficult for her to breathe or eat.  She was released from the NICU after several months and is now home.  Her prognosis is actually good, but for the next 1-2 years and especially during the remaining months of chemotherapy she has unusual medical needs - she gets fed milk / formula through a "g tube" in her stomach, has a valve in her chest for chemotherapy administration, and needs to have a CPAP mask over her nose when she's napping and be watched because her oxygen levels sometimes drop and she needs to be monitored to ensure there isn't a critical breathing problem.  Both of us work - one of us has already returned to work, the other will return to work later in the summer.  We are trying to figure out how to care for her without either of us needing to quit our jobs - our jobs are fairly flexible for one or the other of us to take her to doctor appointments, but in general during the workday will need to have her cared for with a combination of nanny-type caregiving (physical therapy - stretching, practicing with the bottle, tummy time, etc) and some light medical care (things like hooking up the feeding tube to the pump and doing hygiene appropriate for chemotherapy patients like mouth swabs and sponge bathing, but no injections or serious medical care like changing dressings).  She is immunocompromised so there is significant risk if she picks up a cold or COVID.  There is a nurse that comes overnight while we sleep to watch her and make sure her breathing is safe, but insurance will only pay for 8 hours a day.

We have another daughter whose home-based daycare provider has said she is willing to take on the newborn, which would mean we would train the providers on how to operate the pump etc.  This would be somewhat convenient although we would have to bring various supplies back and forth.  We don't think this environment would be conducive to keeping her always away from other kids so would have some risk that she might catch a cold.  This would cost us about $2k a month.

Or, we could pay out of pocket for one of the LPNs from the same agency that sends someone overnight to watch her during the day.  This is expensive ($50 an hour) and we're not sure this is the right skill set to do the rest of the baby-raising activities.

Or we could find a nanny, or do something else.  Would love any ideas folks may have or experiences from people in similar situations - or referrals.  We are in Bethesda.[/quote]

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