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Thread: We were in the news!!!

  1. 03-23-2009, 02:50 PM #1
    Elizabeth Howard
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    We were in the news!!!

    A pr person from OU Children's hospital in Oklahoma City, OK asked us last week to do an interview with a tv station to talk about Isabel's condition and donating blood.. We did the interview yesterday with Channel 5 KOCO. This is a clip from 5:30; this one is really short. There was a longer piece done at 10...but I cannot find it online!! It showed some of the video montage that we made and went more into cdh.. We were just so excited to tell our story!

    This is the shorter one! http://www.koco.com/video/18988348/index.html
    I will post when I find the longer one!


    Oh, this is also our video montage that we made for miss isabel: http://www.youtube.com/watch?v=GAecV0hLQqA
    Our precious daughter Isabel Ruth was born on June 24- 2008 with a LCDH. CDH repair- PDA Ligation-ECMO for eighteen days due to MRSA (Staph Infection- Sepsis). Ventillator and Oscillator from 6/24/08 to 8/28/08- INO machine 7/8 to 9/25. Currently home on Oxygen (Nasal Cannulas) and a Feeding Tube (Mic-key button). Currently has Bronchopulmonary Dysplasia and Pulmonary Hypertension. Taking meds for Pulmonary Hypertension- Bronchopulmonary Dysplasia- and Gastroesophageal Reflux.
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  2. 03-23-2009, 03:00 PM #2
    KateC
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    WONDERFUL ELIZABETH!!

    You and Isabel are gorgeous! I am looking forward to seeing the longer version!!
    Mommy to Shannon Elizabeth (01/16/07-01/19/07 LCDH and HLHS) Peanut Shelbe (miscarried 9/23/07 @ 8 weeks- due 4/10/08 ) Gracie Kathleen & Lily Anne (8/28/08 Blessings from their big sisters!) Shannon's Website! [url]www.shannonelizabeth.virtual-memorials.com[/url]
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  3. 03-23-2009, 06:53 PM #3
    Chris and TracyMeats
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    You have a beautiful family!! If you find the longer version I would love to see it--excellent job on spreading CDH awareness and the importance of donating blood. My son was also on ECMO and received many blood and blood product donations.

    You did a great job on the video!! Isabel is such a miracle and very beautiful.
    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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  4. 03-23-2009, 07:38 PM #4
    StephanieOlivarez
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    WONDERFUL!!!!

    Isabel's video is BEAUTIFUL! Thanks for sharing.
    Stephanie (Shelby's Mom LCDH 7-10-06)- ECMO 7 days- 2 DH repairs- hital hernia repair- Cliff Lip repair- Nissen and Mickey button. Shelby is eating and drinking by mouth now!!! THIS IS FANTASTIC!!!!! Mom to Lexi 8- Morgan 6 and Taylor 5. Blessed to have our little butterfly and our beautiful girls. [url]www.youtube.com/cdhsupport[/url] - Shelby's Journey [img]http://i258.photobucket.com/albums/hh257/gracebutterfly/CDHAwarenessRibbonShelbysmall.jpg[/img]
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  5. 03-23-2009, 08:08 PM #5
    JenniferBrown
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    Isabel video is beautiful.
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  6. 03-23-2009, 08:12 PM #6
    SCURTIS
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    Great job! Isabel is beautiful!!! Love the bow in her hair
    Shauna Curtis - Mom to Addisen Noel born 12/10/2003 with LCDH diagnosed at birth- 5 1/2 weeks in NICU- 70 days with NG Tube- Cleft Lip & Palate- Horseshoe Kidney. Also Mom to: Mitch 08/17/2006 Luke 12/11/2008
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  7. 03-23-2009, 08:37 PM #7
    MelissaKelly
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    Isabel is adorable! Great job, girl. Definitely let us know when you get the other link.
    ~Mel Mother of Michael: RCDH- ECMO (11 days)- cranial evacuation- VP shunt- hernia repair- g-tube- Nissen fundoplication- pyloroplasty- ASD and VSD closures- tracheostomy- hypospadias repair- pulmonary hypertension...but what he lacks in lung capacity he more than makes up with charisma!
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  8. 03-24-2009, 11:54 AM #8
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    Elizabeth that is awesome that Isabel and You were on the news, getting the word out about blood donations and CDH. Wish we could have seen it, hopefully you'll find the longer version. Love you to all Jenny
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  9. 03-26-2009, 11:22 AM #9
    Elizabeth Howard
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    Thank you everyone for watching the video, and all of the compliments. Unfortunately, Isabel has come down with some type of virus, we think. She has testes negatiShe was admitted to Children's last night.. She is normally on 3/4 liter of oxygen, and is now at 20 liters. Please pray for her. She is such a fighter. She is now on vapotherm and is very stable at this point. We are hoping to start weening her down, after the doctors make there rounds. Please pray for her, that she will not have to be intubated, no pneumonia, and that she will beat whatever virus that she has. Isabel's CO2 in her blood gas is high; but it has been going down little by little since we have been here. And of course, her pulmonary hypertension is definately the wild card, and so unpredictable.

    I will keep everyone updated on her condition as we find out more. Thank you all again for your sweet comments. They definately brightened my day!
    Our precious daughter Isabel Ruth was born on June 24- 2008 with a LCDH. CDH repair- PDA Ligation-ECMO for eighteen days due to MRSA (Staph Infection- Sepsis). Ventillator and Oscillator from 6/24/08 to 8/28/08- INO machine 7/8 to 9/25. Currently home on Oxygen (Nasal Cannulas) and a Feeding Tube (Mic-key button). Currently has Bronchopulmonary Dysplasia and Pulmonary Hypertension. Taking meds for Pulmonary Hypertension- Bronchopulmonary Dysplasia- and Gastroesophageal Reflux.
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  10. 03-26-2009, 11:43 AM #10
    MelissaKelly
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    Bah! Tell that little girl to knock it off, it's springtime, she's not allowed to catch a bug!

    Call me if you need anything.
    ~Mel Mother of Michael: RCDH- ECMO (11 days)- cranial evacuation- VP shunt- hernia repair- g-tube- Nissen fundoplication- pyloroplasty- ASD and VSD closures- tracheostomy- hypospadias repair- pulmonary hypertension...but what he lacks in lung capacity he more than makes up with charisma!
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