When I was pregnant with Lily, and shortly after she was born, I spent loads of time doing research on the internet. I hope this list of links will prove helpful to someone who finds themselves in a similar position.
The Carter Centers . A center for brain research in holoprosencephaly and related malformations. And excellent resource for information. You can also send your own baby's MRIs in to them to help further their research and potentially help other families in the future.
March of Dimes . An excellent resource for all things from conception to postpartum,
March of Dimes is also a leader in funding research to help promote
healthy babies. Their annual event, the March of Dimes, raises funds
and promotes community awareness.
March of Dimes for NICU Families . Here’s a shortcut to the part of the website I found most helpful. My
Lily was in the NICU for 2 weeks. This site let me know what to expect
during her stay, some of the lingo they use there, and how her
discharge might play out.
Now I Lay Me Down to Sleep . A wonderful organization! Professional photographers nationwide
volunteer with Now I Lay Me Down to Sleep to take pictures of the sweet
little babies whose lives are destined to be all too short. The best
part: they do it free of charge!
Jaxson's Blankies for Babes . Lacey Rugg is the beautiful mother of Jaxson, a little boy born with Down Syndrome. In an effort to give back to the community around her, Lacey makes blankets for babies with life-threatening illnesses. When Lily died in the process of having her blanket made, Lacey added her death date creating a memorial blanket. I'm in LOVE with this receiving blanket. She also accepts donations on her site to help keep the blankets coming.
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