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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Saturday, February 21, 2009

2-21-09



And Jaime's delivery center will be.....

Cincinnati!

After carefully weighing our options, Tom and I have decided to choose Cincinnati as our delivery center. (This, of course, barring any other complications here in Cleveland...like pre-term labor.) It's great to finally have our decision made!

I have been in touch with both Dr. Lim (Head of Pediatric Surgery) and Dr. Gruppo (Head of Hematology). Dr. Gruppo already had a plan in place for managing Jaime's hemophilia. The plan is to keep his Factor VIII level at a continuous 50% while Jaime is going through procedures and for several days after until he stables out. He did not seem to think that there would be any increased risks for Jaime if he needs ECMO. In fact, because Jaime will have thinner blood, he should not have issues with clotting like "normal" babies do.
We are happy to have him caring for Jared's hemophilia needs, too!

We are very pleased with our decision. Our doctors in Cleveland and team in Cincinnati will be in touch for the remainder of my pregnancy.

Having said all of that...we're hoping that Titi doesn't mind an extra guest floating in and out of her house for a few weeks...yep, Mr. Jared! Columbus is our built in rest stop between Cleveland and Cincinnati! :-)

Check out the new slide show I have added at the top of the blog.
Enjoy,

We're off to the Western Reserve Model Railroad Museum in Mentor. Jared saw that they were having an open house today on the news and can't wait to go!

Have a nice weekend,

Sheryl

2 comments:

  1. Tracy MeatsFebruary 21, 2009 at 5:35 PM

    It sounds like your doctor's at Cincinnati have Jaime's best interest at heart and will be on top of things with his CDH and hemophilia. I bet it does feel good to finally have made a decision. Many prayers that Jaime will stay comfy until it is safe for him to arrive and you are at Cincinnati.

    Enjoy the rest of your weekend, Tracy Meats - mom to Ian, born with a LCDH on 4/3/04 and WY and CO State Rep. for CHERUBS

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  2. AnonymousFebruary 21, 2009 at 10:03 PM

    I found your blog through Davis' and just finished reading your posts and many comments from the other CDH parents. I too am the mom of a CDH baby. In fact, I delivered at Cincinnati Children's thru the FCC. I think we look at the test result numbers to tell us good or bad what to expect before our baby is born. But the truth is that they are only numbers and don't tell the whole story. CDH babies are AMAZING. They are fighters beyond any scope of reasoning. Dr Lim said Emily's numbers were so low that she wouldn't survive. Well, she's 13 months and doing fabulous! Last week I saw DR Lim and reminded him of how well she's doing. He is a good dr as is Dr Crombleholme, Emily's surgeon. Jaime will be in great hands. The entire RCNIC staff is caring beyond belief. They got me through 4+ long months away from my family. I look forward to reading about Jaime's journey. If I can help in any way, don't hesitate to ask.
    Sue -mom to Emily LCDH 1-22-08
    www.carepages.com/Emilyishere

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