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Thread: Baby Girl

  1. #1

    Baby Girl

    Hello everyone, my name is Stephanie and I am 23 years old and my family is from Cape Cod, MA. my baby girl was born September 23, 2017 weighing 5lbs 6oz with a right sided CDH, that was also a "sac-type". 3 days after her birth she was required to go on ECMO but came off of it about 2 weeks later. she is having some complications including right sided cardiac hypertrophy and pyloric stenosis. she had to have a surgery yesterday to correct the pyloric stenosis and place a G tube, making this her second surgery in her short 1 month of life so far. I am so grateful that we live close to some of the greatest hospitals in the country. the doctors here are projecting her to be home by Christmas but it seems so far away my husband, our 2 year old, 7 year old, and myself are anxiously awaiting the day we can finally bring her home
    Last edited by Stephanie Hayward; 10-27-2017 at 01:10 PM.

  2. #2
    Hi Stephanie, I am so very sorry you are on this journey with CDH, but know you have found a wonderful support group. It is pretty quiet over here on the forums anymore, most of our new members are posting and asking questions in our private Facebook support group. If you marked yes to joining this group, you should have received an email invite to the email you indicated in your profile. The invite would be from me. If you don't see it in your inbox, do check your spam/junk folders for it. These groups are private, so unless you are a member of the group, you don't see the activity. Please let me know if you would like me to resend the invite by emailing cpab@cherubs.org.

    Your baby girl is a fighter! Praying she continues to make progress and overcomes her hurdles to come home. One day at a time and keep focusing on the positive. (((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

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