1) The most important purpose was to keep family and friends informed of her condition with up to the minute updates, which also saved us from having to make lots of phone calls. It worked really well, and we were able to keep everyone informed and still focus all of our attention on her and spending time at her bedside.
2) And secondly, it offered a way to help educate as many people as possible about CDH by sharing Sofie's story, and to offer hope to other families affected by CDH.
As Sofie got older and we dealt with more issues...three reherniations and a horrible feeding aversion...writing blog posts became very therapeutic for me. It helped me organize my thoughts about what was going on and work through them, particularly with her feeding issues.
We were also surprised and pleased to find that by having our story out there for friends and family to read, many people opened up to us and offered support through emails and comments on our blog, when they may have not been able to say those same things to us directly.
Writing this blog and sharing our lives with you has turned out to be a really great thing, and I'm so glad we did it. It strengthened friendships we already had by involving people, and answered questions they may have been uncomfortable to ask us, either for fear of upsetting us or just simply not knowing what to say. We've also met many people we otherwise would not have come to know, and I'm very thankful for those friendships too.
A couple of times per month I receive emails from families newly diagnosed with CDH, who have stumbled across our blog while researching CDH online. I'm so happy when they tell me that Sofie's story has given them hope. Hope is priceless in situations like these, and I'm glad Sofie's story has given some hope to CDH families out there.
The past several months, we've been extremely grateful to be moving into a more normal way of life with a toddler. I've kept writing this blog, mostly because it's just something I've gotten used to doing, and now I have lots of fun things to write about - you know, playdates instead of surgeries. FYI: playdates are more fun than surgeries, in case you were wondering.
At nearly 600 posts, and around 200 people who still check it daily, this blog has grown far beyond what I thought it would be when I started writing it, and it can be very overwhelming to sift through when you're looking for information about CDH. It's a record of a very significant portion of our lives over the past 2 years, and I plan to leave it as it is.
We're very proud of Sofie and how hard she has fought to survive and thrive. She's now a healthy, happy two year old who can accomplish absolutely anything she wants as she gets older. I don't want her to always be "the sick baby." When people think of Sofie, I'm sure it's hard not to think of CDH. And that's okay. It's a big part of who she is. And who we are for that matter. But I don't want it to define her. Or us.
We will continue to stay involved with CDH Awareness efforts, but we're ready to begin a new chapter in our lives where CDH is not the focus. Following the lead of several other CDH families, I have started a new blog for our family. I kicked around the idea of making it private, and someday I might. But for now it will be public, for the simple fact that I really don't think that many people will want to read about us! ;-)
I will continue to post updates a few times per year to Sofia's CDH Story about what Sofie has been up to and how she's doing. But our main blog will now be our family blog. I think it's important to keep sharing Sofie's progress and health related issues here, because it's helpful to other families and because no one really knows the long term effects of some of the therapies babies like Sofie have required in order to survive, because they are relatively new.
ECMO has only really been around since 1977, so no one really knows what kinds of risks a middle-aged ECMO survivor may have. Now I really doubt that I will be posting Sofie's 40th birthday party pictures on this blog, but I will continue it into her childhood! ;-)
My intent is to bring the focus of this blog back to CDH, education, and awareness, instead of our daily personal lives. But since it's still fun to write about that stuff (and the Nanas and Papas enjoy it) the new family blog is born, and you can follow it here --> http://www.ourhawksnest.blogspot.com/
4 Responses:
I have been a stocker (reader) of Sofia's blog since I was about six months pregnant with Madelyn. I have clung to the hope that it has provided and since Sofie is about five month's older that Madelyn it has given me great insight to the near future and how to be proactive about things like feeding, and weaning off high calorie formula etc. I am very thankful to the support you have provided my family. I even talk to my family about Sofia and her blog. I am sure I will continue to follow because I have not yet met anyone with CDH that is over the age of 25. Thank you for sharing your story, opening up and providing hope, and show everyone that babies with CDH survive and don't need to be defined by there health issues. Thank you!
i too have been reading this blog since i was pregnant and very scared of our diagnosis, im so thankful for blogs like yours that gave me so much hope for my baby, n now we've been home longer than he was in the hospital and he's 20 weeks old now :) thank you for sharing your story and Sofie's journey and giving lots of parents like us HOPE xxx
Hope you don't mind if I subscribe to your new blog, too! Obviously you've given us so much feeding hope, and I just know Sofie and Abby would be buds if you lived nearby.
{By the way, I have a second blog aside from the Carepages so if you see "Making Lemonade" as the subscriber that's why! My other blog is: http://makinglemonadeblog.blogspot.com}
Sofie is doing so great and I seriously can't believe how far she has come. It's great to focus on being a family instead of being defined by CDH!
You were one of the first CDH families I read about when I was pregnant with Nayeli. I am so thankful and grateful you were there to support me through the darkest times. Sofie gave us so much hope and inspirtion and I will never forget how it made us feel when everything was closing in on us. I plan on following your family blog. I have to keep up with what you are all up to.
thank you for sharing your CDH story with us. It's great to know that our lives will be normal one day.
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