>What should I know and what can I do to save as much as I can?

You can deduct unreimbursed medical expenses in excess of 7.5% of AGI if you itemize your taxes (so you can't double dip with an HSA)

Kind of unrelated to your question but please check with your state’s medical assistance program as your child may qualify for health benefits in addition to your private health insurance regardless of your income.

Talk to the social worker at the hospital. Depending on your child’s prognosis and time in hospital they may be considered a medically independent person and get Medicare Medicaid .

Word of advise, focus on your marriage too. >50% of parents that have a child with a life threatening illness end up divorcing. Realize that everyone has their own way of grieving and that grief will happen no matter the outcome.

In terms of finances, check with your state laws about Children with Chronic Conditions Supplemental Items, or something along that. The child’s healthcare may be paid for depending on your state.

Sorry to hear that. This article explains how deducting medical expenses works:

https://turbotax.intuit.com/tax-tips/health-care/can-i-claim-medical-expenses-on-my-taxes/L1htkVqq9

It is important to keep track of all of your medical expenses related to your newborn's life threatening illness. You should also make sure to save all of your receipts and any other documentation related to the medical expenses. You may be able to deduct some of these expenses on your taxes, so it is important to keep track of them. Additionally, you should speak to a tax professional to ensure that you are taking advantage of all of the deductions and credits available to you.

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Different situation, but my daughter was born at 25W and even though my husband and I made way too much money for Medicaid at the time, we were able to be covered by it during her hospital stay. 1.2 million dollar stay totally paid for.

We also were able to qualify her as disabled via social security and have disability insurance through them which pays for everything as well. It’s a total headache to get all of this done, but it’s well worth it in the end.

Good luck to you guys, and as parents take care of yourselves too. I know it’s hard.