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

>> Saturday, February 24, 2007

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...

8 comments:

The Preemie Experiment February 24, 2007 at 9:40 PM  

Dearest Karen,

First, congratulations on the birth of your daughter. I have been exactly where you are and I sure do understand the fear that is in your face every moment of every day.

As far as hope... Fill your heart with it. You will need it to be an advocate for Cassie. There is reason for hope. The future is uncertain, which is a good thing. You'll have her home and be able to start your life with your prescious bundle.

After reading your post I realized that you sound exactly like I did. I searched high and low for information on prematurity related issues. Unfortunately, 8 1/2 years ago, there wasn't much. You have the benefit of the internet at your fingertips.

I will be checking back in to see how you are doing. If you ever need to "talk", please feel free to email me mom2paige@gmail.com. It's my direct email. I don't often check the one on my blog.

This group is wonderful for parents of new preemies and older...
http://groups.yahoo.com/group/preemie-list/

Thanks for all of the encouraging words you said about us parents who are fighting to educate the public on the lasting effects of prematurity.

Sammie February 26, 2007 at 12:15 AM  

Your daughter is beautiful! I have a 24 weeker who will be 3 in June this year... don't give up and trust your instincts!

Sammie

Helen Harrison February 26, 2007 at 8:48 PM  

Dear Karen,

Thank you for demonstrating that a positive attitude and an unflinching realism can co-exist.

We all have the inner dialogues that you have described, but some parents, sadly, think that the only way to deal with these "voices" is to shut one side of the dialogue down and deny dialogues and choices to others.

I think this is sad, and ultimately self-defeating.

I applaud your openness and courage. Cassie is fortunate to have you for a mother! Your willingness to question conventional wisdom will surely make you Cassie's best friend and most effective advocate.

I wish you both the best, and I thank you for your courage in speaking out!

Helen

chriskeller February 26, 2007 at 9:12 PM  

Karen, you seem to be a rare person, who can bravely look into the future---whether you have a preemie or not!

As much as you are willing to look ahead and plan ahead for Cassie, try also to live in the moment---also for her and for the rest of your family, and for the sake of peace and tranquility.

Don't leave behind others of your family and friends who cannot do what you do---that is face head-on what the future may hold. Others may have to go through stages of adjustment, even stages of grief, which includes denial---a useful tool to use in the short-run.

Weave together for Cassie your hands, held together, your hearts and your already-established closeness as a family. It will be her cradle to come home to. It will be her failsafe.

Best
Chris and Vic

Half-Baked March 3, 2007 at 4:52 PM  

Thanks again to everyone...

C&V - your comments were particularly appropriate this week. Patience was never exactly one of my virtues and this experience is no different, but your post really got me thinking about what was "really" bothering me this week and what to do about it. You helped me to remember that one of the strongest things about our marriage and family is that we each respond to things so differently. I "need" my husband's live in the moment personality and it's one of the things I love and admire about him. He helps to keep me grounded and reminds me to enjoy the good moments when they're happening. Thanks for the reminder!

chris and Vic,  March 6, 2007 at 7:36 AM  

Karen, we need an update on Cassie and the rest of the family! Do tell!
Chris and Vic

alison March 7, 2007 at 3:18 PM  

Karen,
We sound so similar it's scary. I am the mom of an 11 month old micro preemie. 24 weeker born at 1 pound 5 ounces. I had the exact same feelings as you did about the research, statistics and the good and bad news. I, too, read NeoDoc, Preemie Experiment and even email Helen on the side for research and articles. I have a positive outlook but not an unrealistic one and I owe that to the bloggers who sometimes give me more info than the docs. I don't comment much on blogs but love reading so please keep up the good words!

Dream Mom March 17, 2007 at 10:02 PM  

Blogs can be a great thing. It helps knowing there are other people that share your experience and that share their experience on their children.

Over time, you will find your own style and make your own decisions with regards to what you are comfortable with.

Good luck.

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