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Thread: April 19th CDH Awareness Virtual Parade of Cherubs

  1. #1

    April 19th CDH Awareness Virtual Parade of Cherubs

    If you can't make it to either of the parades on April 19 but want to show your support...now there's a way. Check out the CHERUBS Virtual Parade page to find out how you can participate!

    http://www.facebook.com/CherubsVirtualParade

    You can participate on Facebook, twitter, Google+, and Pinterest.

    It's easy...just post pictures of your CHERUB (survivor or angel) to help keep the "parade" going all day.
    Neil Rubenstein has been married since 2003 to his wife, Amy. He has two CDH survivors. His 1st CDH survivor (Aidan) was born in June 2010 after being diagnosed at 37 weeks. Aidan had surgery to repair his hernia when he was 4 days old. His surgeon discovered at that time that Aidan had no diaphragm at all, all his organs were in his chest (except for his liver), his heart had been pushed to the left side by his stomach, and he had two spleens (apparently not uncommon). Even with all this, Aidan did not need ECMO and was only in the NICU for 29 days. Aidan had a follow-up procedure at 13 months old to close up an abdominal hernia that his surgeon created to give his organs room to grow once she moved them all back to their proper location in his abdomen. His second CDH survivor was born on September 10. Brody had his hernia repair at 3 days old. All of Brody's organs except his liver and stomach were in his chest and his hernia was repaired using a Gortex patch. He will need the same follow-up surgery at around 12 months as Aidan.

  2. #2
    LOVE this idea! I wish I could make it to DC. I love that city and all its history and educational opportunities (aka tourist attractions). But I can't afford it. =( I will be attending the virtual parade!
    Mommy to a Miracle: Ericka Elizabeth (3.18.2009)-LCDH diagnosed in utero at 29 weeks- Venitlator- Nitric Oxide- Repair surgery at 13 days- Venous Venous ECMO at 16 days- Venous Arterial ECMO at 21 days- came off ECMO at 36 days- off oxygen support at 84 days- G-tube surgery at 78 days- home at 100 days..FINALLY! I'm so proud of her and all the progress we have made! All meds and g-tube DC'd on May 5th- 2010. She's still a skinny minny but she's healthy and happy! She's amazing!
    ERICKA'S JOURNEY: http://www.onetruemedia.com/shared?p...39&skin_id=801 www.myspace.com/tracy_leigh

  3. #3
    I love all the pictures being posted today!
    Tracy - mom to Ian, LCDH diagnosed at birth, 4/3/04. Ian was born at 36 weeks, spent 53 1/2 days in NICU, 7 days on ECMO, surgery was on day 5, 29 days on a vent, 23 days was an oscillating vent, 546 days on oxygen. Inguinal right and left hernias and undescended left testicle surgeries were done on day 48. Currently has heart related medical issues and exercise induced asthma, but is one happy, happy boy!! Also mom to Cole - 13, Shane - 9, and Toby - 4. CHERUBS Parent Advisory Board Member and Co-Chair, Volunteer Co-Coordinator, and Wyoming State Representative.
    email: tmeats@cherubs-cdh.org

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