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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Tuesday, July 28, 2009

Heading North!

After spending several hours at the hospital, we are finally in the car heading north! We are currently stuck in Cincinnati rush hour traffic...ARGH! However, we are heading NORTH and that's a good thing!
Jaime checked out AWESOME at his appointment. He's still 22 inches long (hasn't grown in length at all in several weeks), but his weight...are you ready for this...it is....drum roll please...10 lbs, 14 oz. The crazy thing is, he's still only in the 3rd percentile for weight and less than 3% for height. This is a bit concerning, and will be carefully monitored.
As for changes...we get to wean his O2 to 1/4 liter. To you or I, this doesn't seem like a big deal, but apparently to CDH kids it can make all of the difference. We're going to wait until we're home to bump him down, so we'll let you know how he's doing later this week. Other changes...physical therapy will now be added to Jaime's schedule. He definitely has left sided torticollis. Jaime actually had a PT session in clinic today...that's partly why we were there so long. The other reason for the lengthly visit was Dr. Tiao, Jaime's surgeon was supposed to peak in on us. He was actually stuck in the OR doing a liver transplant. We never did get to see him.
Nothing else was changed. Dr. Haberman said that she wants to wait until we have our cardiology appointment, which coincidentally is next week. All will depend on the ECHO. We're hoping it's good so that we can get rid of some of his medications. Also, if his weight continues to increase...(they figured it out to be a gain of 42 grams a day) then they will cut back his calories and increase his volume. We are not due back to high risk clinic for 2 months...woohoo! All I have to say is WAY TO GO JAIME!

After Jaime's marathon appointment, we got to visit with some of the RCNIC staff and we ran into Gia's mom, too! It was really nice seeing everyone! Sadly, we were not able to see Carrie or Carter for that matter, as he is not having the best of afternoons. Hopefully we'll be able to catch up with them next week. Sending many positive thoughts your way, guys!

That's about all...I must get back to doing my homework. I'm always on borrowed time with this silly computer. I bought a charger for it last night, thinking it may help, nope, there's still a high pitch whistling sound coming from it and the cord is only charging the battery half of the time! ARGH!

Have a great week...

P.S. Please pray for Baby Jackson Beal, as he is another CDH'er coming in to this world. Mom, Candice is being induced today.

4 comments:

  1. So glad to hear that the appt. went well, overall. I'll be praying that Jaime puts on a little weight before his next appt. Thinking of you all!

    Love,
    Stephanie

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  2. Glad that Jaime had a good appointment. Sorry, about the torticollis though. Good luck with the o2 wean. I knew it would be a good appointment though,because he looks great. Talk to you soon and let me know if anything changes about next Thurs.

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  3. So great to see you guys! Jamie looks awesome!!! Keep in touch...and hopefully we'll see you again next week! :)

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