Jaime Albert Trost was diagnosed with Right-Sided Congenital Diaphragmatic Hernia at 19 weeks gestation. He was born at 34 weeks gestation on 4/16/09 as a hemophiliac with his liver and intestines in his chest. Jaime had his 1st repair surgery at 23 days old. He re-herniated in September 2009, causing his bowels, kidney and liver to be up in his chest. He had his 2nd repair surgery at 194 days old. Though Jaime still has many medical challenges ahead of him, today he is a thriving KINDERGARTENER who has beaten the odds!

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Thursday, March 17, 2011

Congenital Diaphragmatic Hernia - Unique Approach to Care



I just HAD to share this with all of you! If you've ever wondered where our home away from home was or who we were seeing there....this mini video gives you some of those answers! This video is taken of a few CDH families and physicians in Cincinnati.
The neonatologist is Jaime's whom we still have visits with in high risk clinic while we are in Cincinnati. (In fact, I just called her today about Jaime's reflux medication!!!) We met her very early on while I was still pregnant and she was very upfront and honest about the journey we were about to embark upon with Jaime! She has been WONDERFUL!
The surgeon featured was not Jaime's "performing" surgeon, however, he WAS in the OR during Jaime's repair surgery consulting with Jaime's surgeon as Jaime's case wasn't a "typical" CDH case! He also spent many, many hours by our sides making decisions on how to proceed with Jaime's care. Additionally, he was the very man, woken up more than once in the middle of the night, to come in and assess Jaime! While we felt very guilty for seeing his smiling face that early, we are so GRATEFUL that he was there for Jaime...and us! :)
One of the families interviewed in the clip is one that we had the unique opportunity to meet (in the NICU halls) on Jaime's second NICU admit. Lee and Barbie are amazing parents of a sweet CDH Warrior, Robby! Thanks, Barbie for sharing this video with all of us and for spreading awareness about CDH!
Please pass this video along to spread awareness about this horrible birth defect...and don't forget to wear turquoise on March 31st! :)
Today was the first day since last fall that Jaime was able to play on his swing set, he absolutely LOVED it! :)

Finally to all of my Irish Family and Friends, and those who "celebrate"...Happy St. Patrick's Day!

P.S. For those of you who watch the video...at the end, it goes to an "up next" video, also taped at Cincinnati...featured in that story is a little boy and Cincy's Music Therapist, Brian! We spent lots of time with Brian, too! He helped Tom make CD's for Jaime of him reading and playing his instruments. Another awesome member of the Cincy Team! :)

2 comments:

  1. Jennifer TenneyMarch 18, 2011 at 5:49 AM

    After following Jaime and Carter's stories, I have so much respect for Cincinnatti- they sound amazing and are doing great work for CDH!
    Hugs,
    Jennifer

    ReplyDelete
  2. DarcyMarch 25, 2011 at 12:07 PM

    Thanks for posting that video, it is great and explains things so well. I wish that the hospital we were at had had the same follow-up type of care. Once released we only went back for maybe 3 follow-ups and only with the surgeon. I like the continuity of care.
    darcy

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