Finding NICU Parent Support

June 7, 2012

Samantha and fellow Preemie Mama FriendsWhether its a hospital support group for parents, an online community or real-life friends, support from others really helped me out while dealing not only with the NICU, but with being home with a small baby right of the NICU as well.  Even now, almost three years out of the NICU and some of my best friends are preemie parents that I’ve met on my journey.  Even though friends and family are very understanding, caring and mean the best, its nice to talk to someone who has a better idea of what you are going through.

When my preemie was born, I had no idea where to turn or who to talk to.  Our hospital didn’t offer a support group.  I didn’t really know anyone who had been down the same road.  The parents in our NICU visited at different hours or didn’t come at all.  I lost touch with the one parent I spoke to in passing when my daughter was unexpectedly moved to the Level II nursery.

I scoured the internet.  I read and read and read about prematurity and researched issues that were affecting my baby.  It was through the searching that I found   Reading the posts and stories of others brought to light that I was not alone and there were lots of parents going through what I did.

I began to blog about my 29-weeker and through social media tools, I met several of bloggers who had premature children as well.  I began to make friends with preemie parents who understood my situation; some understood it better than I did.

I only wish I had stumbled upon Hand to Hold‘s website during that time.   Hand to Hold offers so much more than the bank of information I was seeking.  They also pair new preemie parents with an “experienced” preemie parent.  The sibling support program in place offers assistance to families with healthy siblings with a sick or special needs sibling.  The online resource directory and other accessible information on Hand to Hold’s website makes it the go-to place for information on prematurity, infant loss and special needs.

When I became involved in our local March of Dimes chapter, I met parents in my community who had been through similar situations as we had.  I recently spoke with a preemie mom who said she didn’t have any preemie parents to talk to, but wanted to get to know some.  She had listened to me speak and said she instantly felt that connection as I was mentioning terms like IVF and NEC – terms that preemie parents just understand without any explanation.  The March of Dimes also brought me back in contact with that one parent from the NICU with whom I had lost touch.

The connections you can make by just putting yourself out there are wonderful and can be that support that you need while your baby is in the NICU, but it doesn’t have to be limited only to such a difficult time.

Now, I have a large extended group of friends who I can talk to about anything.  Prematurity brought us together, but life keeps us together.