"The Discussion" and how it's helped this Mom...

So my little one was 6 weeks old and I'd been trying to find out as much as I could about what's in store for us...then I stumbled across Neonatal Docs blog, linked from there to The Preemie Experiment, Dream Mom, Tales from the Womb and then some...in fact thanks to all these people I've been reading for a week straight! I used to be a little ashamed of my on-line time - but not anymore - I think over the past week I have read some of the most valuable discussions of my life.

You see, I was scared...Cassie was born at 25 weeks. She was 1lb 3ozs at birth, had a Grade II IVH at one week, and was on a vent for six weeks. It was way too early to start talking to her docs about her specific prognosis, but I wanted some information about how other children born in similar situations had fared. Much of what I found was very reassuring. It seemed that kids in Cassie's situation really just needed to finish growing in NICU, they'd probably be a little delayed for awhile, but would catch up by age two. GREAT!

But there was still this scared voice inside my head...and we'd have this discussion:

• Voice - "What about that IVH, was her brain damaged?"
• Me - "Stop being so negative"
• Voice - "She's been on the vent for so long, isn't that causing damage?"
• Me - "Thoughts like that aren't helpful, you need to be strong and optimistic now to get her through this"
• Voice - "Is the whole NICU experience (lights, noise, pain) going to have any lasting effects?"
• Me - "Would you just SHUT UP already - I DON'T WANT TO THINK ABOUT THIS!!!"

But there it was...the questions had been asked and I needed to keep digging. So I kept looking and ended up reading Outcomes on Neonatal Docs blog. Wait a minute - here were people saying that some of these kids have real problems! Some of them were actually discussing the ethics of resucitating younger and younger babies...AND they were discussing the lack of good studies that followed the outcomes of these babies past two or three years of age! Well now I was more than scared and I really wanted to stop reading - but that little voice popped in again and reminded me that I'd never be able to forgive myself if I didn't try to learn as much as I could.

So now I'd like to thank ALL of the participants of these discussions...you've helped at least one Mom immensely and there are probably many more like me. I haven't posted comments on these blogs because this is all just too new for me and I really don't feel like I could participate intelligently (yet) but I would like to say how valuable the discussion is for parents like me and how much I appreciate the participants for being willing to share their thoughts and work on the topic.

To the professionsals: You've helped to not only reassure me that there are docs and nurses out there who are willing to ask themselves some pretty tough questions, you've also helped me to see my daughters docs and nurses in a new light. I still admire them, but I'm no longer scared of them and intimidated by their knowledge and expertise. I feel like I can talk to them now and that can only help my daughter.

To the parents: I've seen many of you criticised as "bitter" and just upset about your child's outcome. You've been accused of trying to scare parents like myself and destroy our hope. PLEASE don't ever let this criticism slow you down or "shut you up". Just like that voice I kept hearing, I need to hear your voices and experiences. You have not, and could not, destroy my hopes for my daughter. Hope is frankly the only thing that keeps me getting up each morning. What you've done is helped to validate my own concerns instead of making me feel as if I were betraying her to be worried. You've saved me from being blind-sided by a diagnosis later on when I thought all she had to do was "catch up". Most importantly, you've helped me become a stronger advocate for my daughter now. As noted in my last post, I did agree to a short dose of steroids when my daughter was having trouble getting off the vent, but I at least feel that I made a partially educated decision and felt like a participant in the discussion with my daughters docs instead of just a by-stander being told how she was going to be treated.

Once again, my thanks to all of you...I've got a long journey ahead of me and it helps to know that all of you are already out there ahead of me helping to pave the road...