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Thread: Thank you

  1. #1

    Thank you

    It took a bit for me to work up the courage to open my hope tote bag box. Partially because I didn't know what it was but mostly cause I'm trying not to think to much about the cdh (seems I am losing that battle though). I really wish there was a way to contact the donors personally and thank them. While it made me tear up, it also gave me comfort and a feeling of support which I am very thankful for.

  2. #2
    Glad you opened the tote bag. A lot of love goes in them! I love donating items in honor of my son whenever I can.
    Mom to Brooke-3/22/04- Braden-3/13/08-RCDH diagnosed at birth- treated at CHOP- CDH repair at 1 day old- home on day 12- Orchiopexy for undescended testicle (4/13/09)- Myringotomy with tubes bilateral (ear tube surgery-7/6/10)
    North Carolina State Co-Rep http://i291.photobucket.com/albums/l...bon-braden.jpg Braden's video http://www.onetruemedia.com/shared?p...edium=text_url

  3. #3
    Hope the totebag brought you much comfort during this very difficult time....so much love is gone into each of those bags we send out. You are not alone on this journey....so many are here cheering your precious baby on. (((HUGS)))
    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

  4. #4
    So glad you were able to take some comfort from the totebag! This journey is a tough one but I hope what was sent makes it a bit easier & helps to convey how much your Cherub & your family is loved!!!

    Shelly
    Shelly Moore
    CHERUBS Oregon Representative and Oregon Hospital Angel
    CHERUBS Prayer Committee Member
    CHERUBS Parental Advisory Board Member (2013-2015)
    Email: oregon@cherubs-cdh.org
    Facebook: http://www.facebook.com/Teckiemom

    Grandmother to cherub angel Jayden, the only son to my born to youngest daughter, Alicia.

    Jayden was diagnosed with CDH at his 17 week ultrasound with severe LCDH, stomach, intestines up as well as having polycystic kidneys. He was born February 19, 2010 at 36 weeks gestation.

    Jayden spent 7 days on ECMO after which he was working on gaining strength for surgery when his polycystic kidneys started failing at about day 15, totally failing by day 19.

    Jayden spent 4 days on dialysis before gaining his wings on March 14, 2010 at age 23 days.

    Remembering Jayden - A Family's Journey in Coping with Loss to CDH
    http://rememberingjayden.blogspot.com/

    Jayden's CDH Story 2/19/10 - 3/14/10
    http://www.youtube.com/watch?v=0fKsAsMS_ZA

  5. #5
    I'm so glad you opened the box. I know so much love goes into each and everyone of them from all our members.
    Mom to Kylee Freedom Green. 10/04/00 - 10/05/00. 3lbs 14 ozs. Born at 35 weeks via emergency cesarean due to massive polyhydramnios that was restricting Kylee’s growth. She had LSCDH Her stomach, chest, and small portions of her liver, had breached into the upper-chest. Kylee had other congenital anomalies including: multiple heart-defects, two-vessel cord, Trisomy-18, as well as an AV canal defect. After much research, we chose to deliver at St. Luke’s Episcopal Hospital in Houston, TX . As soon as they delivered her she was immediately transferred to the NICU/Neo-Natal team right at the adjoining Texas Children’s Hospital. Also mom to Trey ( 9 ), Skyla ( , Chloe ( 6 ) & Elodie ( 3 )

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