Wisdom Heart

I have transferred the blog to a new domain and will not be updating this blog.
The new URL will be http://www.iheartsophia.com/blog.Please update any feeds, bookmarks, subscriptions, etc. with the new URL. The URL for the RSS feed is here.
There are new posts there now. Thanks.
-M

Hi everyone.
I am in the process of moving WisdomHeart to a new domain. The new URL will be http://www.iheartsophia.com/blog.
At this point, I have moved all the archives and links and I will likely be posting at the new site from here forward, as it is now fully functional.
The site still looks pretty spare as I have not yet designed a template for it.
I will leave this site up and in the next few days put a link at the top of the blog linking to the new site.
Please update any feeds, bookmarks, subscriptions, etc. with the new URL. The URL for the RSS feed is here.
I will try to get a post up about Sophia's birthday party in the next couple of days.
Thanks-M

Sophia is two years old at 4:32pm Friday, October 27th.

We are so thankful our little girl is doing so well. When Sophia was born, we new our lives would never be the same. We could never have guessed that within a few hours of her making her way into the world, she would be diagnosed with a congenital heart defect. I remember her diagnosis with such vivid detail. Within a couple of hours of her delivery, after receiving high scores on all her assessments, Sophia started to have trouble breathing. When she started to get a little dusky around her lips, the nurses figured she had a little airway obstruction. This is not that uncommon after delivery. Just to be safe, the nurses sent her from the nursery to the NICU to be suctioned. After a short time, the NICU doctor at the hospital where she was born said that he suspected she could have a heart defect. He later said he suspected, transposition of the great arteries, a condition where the pulmonary artery and the aorta are transposed. He called in Dr. O'Laughlin, who is still Sophia's cardiologist, to do a consult.

At some point late in the night (3am?), Dr. O'Laughlin came in and very carefully explained how he had done an echocardiogram and confirmed that Sophia indeed had a heart defect. He said, she did not have TGA but instead had a condition called Tetralogy of Fallot. He drew diagrams and carefully explained all the details to us in an unflinchingly frank, yet sincerely compassionate way. We were shocked. We had no idea. We couldn't imagine what this meant for all of our plans. I think I understand now, you can never know what to expect from parenthood until your a parent. But, we never prepared for the possibility of Sophia having serious health problems.

When we were led down the hall and saw Sophia in an oxygen tent struggling to draw her every breath, I was terrified not only of the present danger, but the way this might affect her life longer term.

But, now, when I reflect on the past two years, I am so grateful for the lessons I have learned from Sophia. She is an extraordinary child. And I cannot imagine wanting her to be any different than she is. I was so concerned the night after she was born that she would be so delicate and frail that I wouldn't no how to be her father. But she taught me, and guided me, and before long, following her lead, I was no longer worried about her fragility. I am instead completely enraptured by her strength and positive attitude. Even at her most vulnerable, I am struck by her awesome power. I can only aspire to be that indomitable. And I really hope that someday I may inspire her as deeply as she has inspired me.

Happy Birthday, Baby.
Daddy loves you.

I know I haven't been posting much lately.
Well, here is why. I Heart Community is a forum for the CHD community.

I thought it might be nice to have a central location where everyone could meet online. I have benefited so much from the support of this community and I thought it would be nice to have a forum in which we could interact with each other online. My hope is to unify the CHD community in one place and as a result raise awareness and strengthen our influence. While at the same time providing understanding, insight and support to one another. Like Erika said in a recent post, "you can't understand unless you've been through it".
The site is fully functional, but I am still in the progress of tweaking the design and making little adjustments here and there. I would be very grateful for improvement suggestions(there is a suggestions? topic in the introduction section). I didn't set up categories for discussion I thought I would let things develop naturally and organize the forum based on what develops.
Please spread the word about this forum to any of the other CHD community resources you know, online or in your local communities. The more members we get the better this will work.
I cannot wait to see you there. Please sign up and start a discussion.

I set up a CHD group on flickr.
I thought it might be a good central location to share photos and possibly raise some CHD awareness.
It has a photo pool and a discussion forum.
I named it "I Heart Community" and the URL is http://www.flickr.com/groups/iheartcommunity/. If you are already a member of flickr and your life has been affected by a CHD, please consider joining the group and posting some photos. If you are not already a member of flickr, it is free and easy to join.

Sorry for the lack of activity. I am working on some exciting new stuff.
I will post something soon.
Please hang in there.
-Michael
In the meantime, there are some new pics at flickr.