July 28, 2026

NICU Loss is a segment of the loss community that I don’t come across very often. And it can be very isolating to see all of these NICU Trauma resources and posts that I relate to part of – until the “when you get home” part.
It’s a feeling that’s pretty similar to trying to prepare for a NICU stay when all you can find are preemie accounts and representation.
Or to put it into perspective that might resonate with more people – imagine your only support group available being for Breast Cancer – when that is not the cancer you experienced.

Throughout this entire journey I have felt like I only fit part-way into whatever support I can find. And I’m in no way saying that those supports aren’t valuable – but finding them for our situation has been difficult. And I know we’re not unique in having a full term NICU baby who didn’t make it home.

The Pregnancy & Infant Loss books have one tiny chapter on Infant Loss past within the first couple days.

Many of the Loss Groups that I’ve looked put on by non-profits don’t have an Infant Loss or NICU Loss group – the topics we covered were still valuable – but there wasn’t that understanding from myself or the others in the group of some of the pieces that are different between late term loss or stillbirth and infant loss.

FB has all kinds of grief support groups that are a good space for some – and for me they made me feel less alone in the beginning – but don’t offer the support of a smaller group.

I’m grateful to have stumbled upon a NICU Loss group that has been so healing.

All of that being said – I would love to find resources I might have missed that I wish existed or that were easier to find around the following topics:
⁃ Full Term NICU support
⁃ Infant Loss books & grief groups (virtual or in person sessions)
⁃ NICU Loss books & grief groups (virtual or in person sessions)
⁃ CHD Loss Resources

I am a Mom, a Heart Warrior’s Mom, a NICU Mom, a Loss Mom, a NICU Loss Mom, a Loss Mom with Living Children, a CHD Loss Mom.