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, July 2, 2009

Class is in session....


First, a shout out to Carrie, Carter's mom. It's her birthday today! Not only is it her birthday, it's hers and Jeremy's wedding anniversary.
Happy 31st Carrie and Happy 4th Anniversary to both of you! I'm soooo glad that you enjoyed your surprise, Carrie. In case you were wondering, Jeremy's gift to Carrie was a shopping spree at Babies R Us (later, you'll read how we HAD to go there, too). They, like us, don't have anything ready for Carter. Jeremy thought it would be fun to finally take Carrie shopping for things. Sounds like she had a wonderful time getting to be a "normal" mommy! :-)

So, Tom and I spent literally all day (10:00 A.M. to 6:30 P.M.)"learning" how to take care of Jaime. WHEW, we are exhausted. Our nurse, Jaime (yep, that's her "real" name) was AWESOME. She had Jaime early on and now has him this week. She's been really fun to have as our teacher. Jaime, just so you know I learned a few things..."Baby, Baby are you OK?" Oh and I promise I won't shake Jaime! :-)
We learned CPR, how to draw up meds-this was actually harder than you would think because the doses are so incredibly small (he's coming home on 8 meds), Tom had to do Jaime's NG and we both learned how to use the feeding pump at home. Oh, and we watched a Car Seat Video and met with the car seat installer. We learned that Jared's car seat had expired, who knew this could happen? So, we had to drive to Babies R Us to purchase a new one so that we could bring Jaime home. This was quite unexpected and the Babies R Us was pretty far away, too. None the less, we got a new one...I must admit, we like it even better than our old one which was walked to the incinerator by the inspector. :-(

Jaime had another good day. He took all of his feeds by bottles through last night and all of today. Some of them he drank only 70mls and the last 10mls had to be put in his tube. I think it's silly because 70mls is pretty awesome. Not to mention his normal feeding was 75mls and they just bumped him up to 80mls today. They bumped him up because he lost a few grams again. He's not skinny compared to a 1 month old (adjusted age), but he's skinny for an 11 week old. Anyway, he also had his hearing test...as shown in the photo. He had monitors on his head and behind his ears. In his ear he had a tiny electrode. We were saying it looks like an iPod. He was fast asleep when they did this...actually they only do it when babies are sleeping. Jaime passed with flying colors! YEA!

Nothing else new to report, Jared spent the entire day with Bev and family. He had a blast, he didn't want to leave and asked when he can come back! He's really going to miss the Luken Family...Tom and I will, too! Thanks guys for helping us out with Jared today!

Before I go, I'd like to ask for your prayers and positive thoughts for our CDH Friends.
1) Gia and her parents. Gia had to have a chest tube placed yesterday.
2) Carter, as he needs to put some weight on so Jeremy and Carrie can take him home. (11 days after our discharge?!?)
3) Carter M., we're hoping that he gets his chest tubes out soon so that Beth can finally hold him for the first time!
4) The Studdard Family. Stephanie had twin girls 2 weeks ago in TX, one has CDH. They are having some "roller coaster" days and could use your prayers and positive thoughts.
5) The Beal Family, as they are anxiously awaiting their CDH baby boy, Jackson.
6) Emily Kozik our CDH buddy at home. She's having feeding and weight issues.
Finally all of the CDH families out there dealing with this crazy journey just like we are! Thank you!

I'm off to get some homework done...classes started again for me on Monday, so I have lots to do.

Have a nice evening....

2 comments:

  1. You are too sweet adding Emily to your prayer requests. Thank you very much. Last night at 9:40 she had another screaming fit due to gas which lasted 40 min!!! My poor baby :(
    You'd think Babies R Us would open a store closer to the only children's hospital around-they'd make a fortune on us parents who bought NOTHING because of the uncertainty!
    Jaime is doing GREAT with his feeds, he needs to whisper in Em's ear about cooperating!
    Em came home with about the same amount of meds. The only trouble we had was not having an accurate schedule of when to administer each med. Make sure you have that!
    Have a great day!

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  2. Thank you so much for putting us in your blog. We really need the prayers. I'm so excited that you get to take your little boy home! I know it'll be hard at first, but heck your home! I can't wait to bring my baby boy home!

    lots of prayers candice

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