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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Sunday, June 7, 2009

One Step Backwards...







So, yesterday, I mentioned that Jaime was weaned to 4 liters O2 again...well, once again he didn't tolerate this and had to get bumped back to 5 liters O2. I was talking with some of the nurses about this, from a CDH standpoint he's stable. His gases, echo, and chest x-rays are all good. They are thinking that Jaime being a preemie is coming in to play here. His lungs aren't as mature as if he were born full term, regardless of the CDH. So, we're back to the wait and see game. It's kind of frustrating because just when you think you're on the up hill, you come crashing down again. Typical CDH roller coaster!

Speaking of roller coasters, Jared spent the afternoon riding rides with his "girlfriend" Chloe and her little brother, Connor at the church festival. I've posted some photos of the kids. Thanks, Paula and Michael for taking Tom and Jared to the festival and for spoiling Jared-yep, that's right, Paula, I heard all about it! Tee, hee!




Back to Jaime...Emily measured and weighed Jaime tonight, he's about 8lbs 6oz and 21 1/4 in. long. Another interesting "fun fact" is that Jaime's head circumference is the same size as his tummy. His head should be bigger, but he still has a little pouch from his fascia (the muscle under his incision) not being closed yet. Overall, he looks great, if only we can control his respiratory status, then we'd really be in business.
In other news, Jaime had more visitors. Jeanie and Ryan (21 yr. old LCDH), Bev and of course, Titi came for visits today. Ryan wasn't brave enough to hold Jaime, but Jeanie, Bev and Titi did. Honestly, Jaime really LOVES being rocked in the rocking chair. Emily was going to try and locate an appropriate swing for Jaime later, we think he'd really like that, too. At the very least, it would give him a change of scenery and position.

That's about all for now...enjoy the photos!

2 comments:

  1. 2 steps forward, and 1 step back. He's just keeping you on your toes, making sure you're all still paying attention to him. I love the swing idea, and I think he would love that. The pictures are GREAT! And praise God for Ryan! I love that he's a 21 year old CDH survivor. He's a true walking blessing and miracle. God bless all of you!!!

    Love,
    Stephanie

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  2. I think he loves me! What are Bev & I going to do when you take him home :( ??

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