Hand to Hold's Official Blog: Written by Parents for Parents

NICU Support Groups

As I mentioned in an earlier post, I recently returned to visit the NICU where my preemie lived for over three months.  During my visit I got in contact again with the Parent to Parent organization they had there to provide support for all of the parents in the unit.  It was brought to my attention that so many parents don’t attend the parent meetings, gatherings, or activities.  I, myself, only made it to one parent support class during my 3 months at the hospital, for various reasons, although I always wanted to go so I could meet and talk with other parents who would understand all of my fears for my baby.

I just want to take a moment to say how important it is for preemie parents to find a support group.  There are Facebook pages (Preemie Babies 101 being an awesome one!), blogs (again, if you’re reading this you’ve already made a great choice :), online forums, NICU parent support organizations, etc.  Whatever medium you are able to participate in, do it.  Having a preemie baby is such a lonely road (at least it was for me) because so few people I knew had any idea what I was going through.  Actually, none of my family did, and I did not get in touch with any friends who understood my situation until a few years later.  By the time I finally joined a support group for preemie parents I was amazed at how therapeutic it was to share all of my experiences, to express all of my fears, and to have others respond with complete empathy and understanding!

I strongly encourage all of you to hold fast to a support group.  Hopefully, Preemie Babies 101 can be a huge support to all of you, but don’t rule out any in-person support groups that are offered at your NICU for preemies in the NICU and/or for NICU graduates!  If you don’t know of any such NICU organization where you are then ask your assigned social worker (hopefully you have one), the nurses, or the receptionist if there is a parent support group you can attend.  If not, then ask them to create one!  Maybe you, yourself, can start a parent support group simply by having the receptionist announce a time and place for parents to meet and get to know one another.

Don’t bottle up all of your fears and questions – though you may feel alone at times, you’re not!  One thing I learned in the NICU was that there was always someone worse off than me.  If I was experiencing something rough I could usually find someone who was getting it worse.  It gave me a sense of hope that pulled me through the worst times.  You’re not the only one who has to say goodbye to your baby every night.  You’re not the only one who cries yourself to sleep every night.  You’re not the only one who has to see your tiny infant have surgery, blood transfers, CPAP, etc.  When I found my first support group I was shocked that other parents had the same feelings and fears that I did!

Thanks for being here at Preemie Babies 101.  I hope that if you know someone who is at risk of having a preemie or who recently had a preemie baby you will encourage them to join us here or on Facebook or to be a part of their NICU’s parent support group.  Those of us who are part of a preemie baby community need to spread the word so that no one has to survive their preemie baby journey alone.  We’re here, and we want to help!

Did you have a support group during your NICU stay?  How important was it to you?  What further advice do you have for someone looking for a good preemie parent support group?

Afton Mower About Afton Mower

After Mower (UT) lost her firstborn son at 21 weeks.  Her daughter was born a year and a half later at 27 weeks.  The NICU was overwhelming and isolating and it was through those two experiences she was led to found this social hub for parents to find the support they needed. Afton also gave birth to another daughter, born two days overdue after four months of strict bedrest. She believes it is a tender experience to hold a special baby in your arms when his spirit returns to his heavenly home, a miracle to watch tiny babies survive the risks of prematurity and a blessing to hold a healthy full-term baby after months of difficulty and sacrifices.

Comments

  1. I think you do a great job with this blog, I wish I knew about it while my baby was in the NICU. But then again I hardly had time to surf the web. Keep up the good work…

  2. Melissa C says:

    I wish I had a support group during our NICU stay. 🙂 Glad to have preemiebabies101.com!

  3. I wish I had a support group with my NICU stays too so many confusing information on the web

  4. I too wish I had the support group when my son was born. I really did not have time to get on the computer and did not know these groups existed. I was too caught up in what was going on in the NICU to look for groups like this. Thank you so much for providing this support group for all of us! It is amazing to speak with other Moms and to know we are not alone.

  5. I wish there was a support group too but we havent found one. Our son was born 4 days ago, at 24 weeks, He is 1 pound 9 ounces and in NICU. it has been a long 4 days and i know how hard its still going to be. We are having a tough time coping.

  6. Cheryl, please let me know if you need to talk, vent or anything. I have an ex 23 weeker. He was born at 14 oz! He is now 9 1/2 months old and doing well. We endured 170 days of the NICU’s in 3 different hospitals, so I have seen that part of this roller coaster ride. If you need anything at all, please email me.

    • i need someone to talk to…i am from Philippines … Our son was born 16 days ago at 30 weeks. he is 1 pound 7 ounces and in NICU … i dont know what to do when hes doctor told me that he’s chance of survival is 50/50… how i wish i was in your country and in your state to get the proper medical attention my son needed… sadly hospitals here are so expensive, and we’re about to lose hope…because if he stays much longer in the NICU we surely cannot afford it anymore… his doctor says he needs another dose of artificial surfactant (he already had 2 doses,4ml each) and it cost so much here in our country… my heart’s breaking everytime i see him struggling for life…what saddens me most is seeing him in so much pain…

  7. I love seeing this site.. Thank you so much.. My daughter and I will enjoy it..

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