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

Sharing Your Child’s Progress

The moment our daughter was born 14 weeks early, we were thrust into a flurry of decisions to be made.  Who would travel with her to the children’s hospital, who would stay with me in the maternity ward, who would contact our bosses and HR departments, and so on.

Immediately, the news started to be shared with family and friends over the phone and via e-mail.  Once Addie was settled in the hospital and I had been released, we had a huge decision to make: how would we update our family and friends on Addie’s progress?

There are a plethora of choices now:

  • Facebook and/or Twitter updates: This would work well if a large number of your network uses these applications.  In 2008, most people had never heard of Twitter, and most of my family was not on Facebook.  It would have left a lot of people out of the loop.
  • CarePages.com and CaringBridge.org: I’ve known people who have used both.  I honestly can’t remember why we didn’t go this route, except maybe I didn’t hear about it right away.
  • Starting a blog (or using one you already have): I had severe paranoia about this.  Simply because I didn’t want strangers (or people I didn’t like/trust) showing up at her well-known children’s hospital.  I also didn’t want pictures of Addie to be distributed without my permission.
  • E-mail: Ultimately the route we chose.  I only sent out a few pictures throughout her NICU stay and asked people not to forward her updates to others.  Too many people were interested in Addie in a voyeuristic way, and I only wanted the people who genuinely cared to be “in the know.”

We now have a blog for Addie that is invitation-only.  I use it to post current pictures for family and out-of-town friends.  I’ve also gone back and posted all of our e-mail updates for posterity.  At some point, I’ll have a coffee table book printed up for Addie.

Ultimately, it’s up to you and your spouse to decide how to update people on your preemie’s progress.  Your child’s health and your family’s well-being are your first priority, even over hurt feelings and people who use your situation to gain extra attention.

What application did you use to keep family up to date?  Did you have any drama like we did?  I’d love to hear your stories!

Comments

  1. We used CaringBridge.org to keep everyone up to date as soon as a friend recommended it. We had started off with Facebook, but so many others checked the CaringBridge site daily that I realized quickly it was the way to go. After Roxy came home from the hospital and I felt it was time to move from the CaringBridge site, I started a blog for her on Blogger which gives everyone the ability to keep up with her.

  2. we used a blog and had absolutely no issues or drama with it, just positive experiences. it was easy to update and so nice to share with family who didn’t use Facebook. i also used Twitter & Facebook to send out little updates & pictures to friends on the daily goings-on, and i’d get immediate support and love right back from them – it was wonderful 🙂

  3. I started with CarePages the day he was born. I was able to update almost daily. My son’s 161 day NICU stay was a bumpy road. It was a release for me to sort through the day and my feelings and also a great way to allow others into our new world. That was almost 2 years ago and I still update at least 1 a month. I get a lot of positive feedback from the people once know as Garver’s cheering squad and now known as his fans. It was a great way to inform people of how he was doing and we did not have to discuss the NICU with everyone we would run into. I highly recomend CaringPages. And as a bonus we can go back and reflect on the past two years by paging through his site. They even have the option to print a book with pictures and comments included.

  4. We used a blog. its was the easiest for me and others too. I have used caringbridge or care pages in the past and wasn’t super impressed. One of them you have to sign in and make an account to read the updates (which I didn’t really like). I thought the blog was the easiest place for people.

  5. I had a blog that I updated daily and sent pics as often as I could

  6. Facebook…emails.

  7. We have a family website that I updated weekly. Other than that, it was Facebook daily and telephone. While the hospital had a care page linked up to us (for sharing information), I already had these other social media memberships that I already was used to using.

  8. Facebook & Twitter for wide distribution.
    Email for stuff meant for family/close friends only.
    Now blogging about past and current progress.

  9. Facebook for me. Wanted to blog but I always felt exhausted so I can only updated on Facebook.

  10. My sister set up a blog and would update people for us which was a great help as we just did not have much time to step away from our first b/c he was so sick.So we would just call her and shed call everyone else for us and update the blog….Unfortinatly,Alex passed away in the NICU 2days shy of 4mths,but we were blessed to have and bond with him.We were back in the NICU at the end of that same yr w/our lil “suprise” brother of Alex’s and she again stepped upto the plate and just updated everyone for us.Braeton is now 20mths and home..after several major surgeries and 4mths in the NICU and a few close calls we know his “guardian Angel” brother is looking over him & incase I never said it-Thank you sis for all the support and updates you took over ;)!

  11. My Sister set up a blog on CaringBridge. We updated every day during our 170 day NICU stay and now we keep updating every month. it was a great way to keep all of our family and friends updated on Michael’s progress. You can visit his site at : http://www.caringbridge.org/visit/michaeljameskyung

  12. we stayed at the Ronald McDonald House in Denver while my lil boy was in the NICU for 6 weeks. So I was lucky enough to have internet access and share our progress and pictures by email and Facebook. I am so glad we live in this age where we can do that!!!

  13. FB and LJ

  14. email and a private family blog.

  15. http://www.carepages.com this was a lifesaver after my 26 weeker was born because my phone was ringing of the hook and I couldnt take explaining the situation over and over.

  16. I update family and friends on my preemie twins via, facebook, texts, and calls. People demand their daily pictures of each boy be texted..

  17. my daughter was in the NICU for 3 months and I took pictures everyday and posted them on facebook and sent out text/pics to everyone to keep them updated that way too

  18. I have such few family members. I would just go over there and talk to them. Everyone was too scared to go with me to the NICU. Then some idiot brought there kid in with full blown Chicken pox and the place was under quarantine. So only I could go in anyways. Those who were too far from me I would call. Being personal about it and using my voice instead of email helped bring it home to my family more.

  19. i did it on facebook because i didnt want to talk to anyone and i took photos

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