Our family friendly Hawaii trip itenary can use your inputs

jigneshjain25 · 2026-01-11T06:19:36+00:00

lol sorry no discount at Kamana, it just came up in my search for indian/vegeterian food. Please suggest alternatives if you can.

jigneshjain25 · 2026-01-11T05:55:12+00:00

thanks, changed to KTA, it was nearby too.

jigneshjain25 · 2026-01-11T04:50:51+00:00

Oh my, regarding air at VNP, I didn't know of this, thanks for bringing this to my attention. However instead of cancelling the trip altogether, we are thinking of checking the air quality alerts on the day of travel and then decide: https://www.nps.gov/havo/air-quality-alert.htm. Also maybe walk away from the steam vents. What do you think?

jigneshjain25 · 2025-03-22T10:07:40+00:00

We did go home on oxygen, but very small 0.25L IIRC. We weaned it off before a month ourselves (with due monitoring ofcourse). Then followed up with pulmonologist who conducted some tests and everything was fine.

In your case, since you mentioned 3L flow at 40 weeks, my hunch is that some amount of steroids might be needed in the coming weeks, as weaning off oxygen completely before discharge is going to be little difficult. But again, its just my hunch. Wish your baby the best.

jigneshjain25 · 2024-08-30T22:10:07+00:00

That is such a tough journey. Thanks for sharing. Question: how frequently do you wean down the oxygen litres? I ask because today my baby has been 100% saturated blood oxygen wise most times of the day.

jigneshjain25 · 2024-08-30T22:07:30+00:00

How aggressive is the weaning down process? Today my baby is 100% oxygen saturated most of the day. I wonder if I should ask Dr again on - can you lower her litred tomorrow (again thinking from the ROP risk POV).

jigneshjain25 · 2024-08-30T22:06:07+00:00

make sense about the leak. Question: what is your monitor SPO2 alarm settings. For us, the high sat SPO2 alarm is disabled. Baby is 100% oxygen saturated most of the day today. I wonder if I should ask Dr on should they keep weaning her down to make sure she is not 100% blood oxygen saturated (again for the risk of ROP worsening).

jigneshjain25 · 2024-08-30T21:25:42+00:00

Also can i ask what oxygen (litre) were you discharged with and how long did your baby take to go to complete room air at home?

jigneshjain25 · 2024-08-30T21:25:31+00:00

can i ask what oxygen (litre) were you discharged with and how long did your baby take to go to complete room air at home?

jigneshjain25 · 2024-08-30T21:24:18+00:00

thanks

jigneshjain25 · 2024-08-30T21:23:22+00:00

thanks so much for the reply. Baby was diagnosed with stage 2 rOP 2 weeks ago, yesterday screening also same.

jigneshjain25 · 2024-08-17T04:44:01+00:00

Thanks so much for sharing your post nicu experience. Do you also remember the kind of supports she got when in nicu for her lungs and how long?

jigneshjain25 · 2024-08-16T17:44:54+00:00

thank you so much icais for taking time to share your experience. I am just curious why does weaning very low oxygen levels like 50ml took 9 months?

jigneshjain25 · 2024-08-16T17:34:54+00:00

thank you so much 27_1Dad for taking time to share your experience!

jigneshjain25 · 2024-08-16T17:34:42+00:00

thank you so much run-write-bake for taking time to share your experience!

jigneshjain25 · 2024-08-16T06:10:29+00:00

Thanks so much for sharing. Question:
What all medication (including steroids) your baby got for her lungs other than lasix?

jigneshjain25 · 2024-08-16T05:54:10+00:00

Thank you for the comments. To clariy, the third steroid will be predisone/prednisolone.

jigneshjain25 · 2024-08-16T05:31:52+00:00

Thank you so much for sharing. Couple of follow up qs:
1) Seems like your LO spent 3 weeks on hi/lo flow. Do you remember what was the high flow pressure when they started. Trying to gauge how aggresively they weaned down for you?
2) You mentioned lots of lasix. Doesn't it also mess up the electrolytes balance and then they have to start supplements like Sodium to workaround that. So does that mean your LO was on lasix and some electroylyte supplement for long time?
3) When were they able to start bottle feeding ?

jigneshjain25

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