Handling daytime child care for newborn cancer patient

[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.

[Anonymous]

Sounds like you need to hire an actual nurse to take care of your child.

[Anonymous]

Have you looked at newborn care specialists? as an NCS I often had babies just released from the NICU Who had G-tubes, oxygen monitors, etc. I think that’s a population that might be more likely to have some experience with the medical side of things without being as expensive as a nurse. If I were you I would do something like that for the first cold and flu season at least before considering putting her into daycare.

[Anonymous]

I wouldn’t rely on the provider to keep the o the cleanliness level that is likely needed. Also if your provider or any of the assistants do not have a good command of English, they might have trouble communicating with medics personnel if something were to happen and they needed to seek medical care. In your child’s case you would want the provider to be able to explain the complex medical situation. Of your child

[Anonymous]

OP, I’m sorry you’re going through this, and I hope your daughter’s condition improves! If I were in your shoes, I would want either a trained nurse at home, or even better, a parent or grandparent. I would not trust a daycare provider.

[Anonymous]

Not advice just wanted to say that I wish you all the best, OP.

[Anonymous]

Op here - Would love recommendations on how to find a newborn care specialist - sounds perfect

[Anonymous]

i would consider a nanny with excellent references (and good language skills) or the lpn. a nanny would be less expensive and, bonus, could take your other child here and there if you need. if the homecare provider seemed confident she could do it, i would think a nanny where your baby is 1:1 would definitely be able to do so. personally, i would go the nanny route.

[Anonymous]

Hi OP,

This sounds challenging. One option to explore is advertising a nanny position at nursing programs in the area. One other option would be to post on Care.com under the "Special Needs" section and indicate you would ideally like a nanny who has some experience with healthcare.

For newborn specialists, I've heard that Hush Hush Little Baby is good.

Good luck!

[Anonymous]

OP again - also curious about market rates for an NCS. Considering the agency is almost $100k a year we would be willing to pay a relatively high rate to attract the right candidate.

[Anonymous]

Nurse or parent. Needs are too great for a nanny.

[Anonymous]

Anonymous wrote:Nurse or parent. Needs are too great for a nanny.

This. While rare, a lot could go wrong. I don't think I'd trust anyone but a parent or a nurse. I'm a nurse. I have quite a few friends from nursing school that do private pediatric care. I also have a friend who does NICU and said it's not uncommon for people to venture into private care from there as well.

[Anonymous]

Thanks PP - any suggestions on how to find these folks? Care dot com and our neighborhood list serve obviously, anything else? Are there nursing bulletin boards or lists we should post on?

[Anonymous]

You need an actual nurse that provides one on one care. These are complex needs and it isn't fair to ask a daycare provider to handle them--it's not fair to your kids or the other kids there. Her pediatrician should be able to recommend an agency.

[Anonymous]

Anonymous wrote:Nurse or parent. Needs are too great for a nanny.

I agree with this; this is not a nanny job. Keep your other child in daycare and then hire a private duty nurse/medical professional for the little one.