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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Wednesday, November 11, 2009

Feeding Issues Cont....

Jaime still is not tolerating his feeds. The drs. went up on his calories and down on his volume...still didn't help. He has absolutely no desire to drink his bottles. When he actually does drink, he spits a lot of it out. No, he does not have an oral aversion because he sucks and puts all sorts of things in his mouth, we're thinking that he just feels full, therefore doesn't want to eat. Having said that, I was told by the NP that Jaime would need to prove that he could gain weight and tolerate his feeds before going home...well, so far he's done neither. He lost another 70 grams tonight and he threw up over half of his 9:30 P.M. feed. :( So, it hasn't been "officially" said yet, but I'm going to guess that we won't be going home this weekend! Kind of a bummer, but we want to bring Jaime home well, not sick just to have to turn around and come back.
Nonetheless, I will get to see Tom and Jared. They are still going to come visit. Jared will not be allowed to visit Jaime, but that's OK, Tom and I will just take turns sitting with Jaime. Honestly, it will be a nice break for me and I can't wait to see Jared...I think he grew since the last time I saw him over a month ago! I'll have to come up with something fun to do with him! Maybe go to the aquarium again, they have a new jellyfish exhibit that wasn't open the first time we went there. Or maybe the indoor swim park, RMH has discount tickets for both! We'll see!
So other than waiting for Jaime to tolerate his feeds (or as i call it, watching paint dry), and Jaime getting his hepatitis B injection, we spent our day playing with all sorts of toys. We didn't go to the playroom today because each time Val came, it just wasn't a good time to go...Jaime was on the feeding pump or falling asleep....Like I said, we did play with lots of toys in the room and read lots of books, too. Hopefully tomorrow Jaime will go to the playroom, it was sooooo nice getting him out of his room yesterday.
Here's a slide show of our playtime today. Oh and a pic of Jaime's new skill...thanks Kim for teaching Jaime this fun new trick! :)
Enjoy!

7 comments:

  1. Candice and Rob BealNovember 11, 2009 at 11:01 PM

    awwww how sweet is he! But we need him to start takin these feeds! He's such a good boy! It'll come with time.....i know your ready to get him home healthy,,,,,,

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  2. Bev LNovember 12, 2009 at 2:15 AM

    So sorry about this feeding issue. You're right on the flip side, you will get to see Tom and Jared. I know you have missed them horribly. Hopefully, you will be able to get out and about today. Take care of yourself work on that rest thing.

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  3. hollyNovember 12, 2009 at 4:16 AM

    I almost spit out my coffee laughing at his new skill! he is so cute. I love his hair.

    I hope he starts tolerating feeds and gaining weight. I can't imagine how hard it is to be away from Jared for so long.

    Love,
    Holly

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  4. Sue mom to Emily LCDH 1-22-08November 12, 2009 at 5:02 AM

    Bummer! I was really hoping Jaime would be tolerating his feeds better by now. What is their game plan of this issue? What about checking his gastric motility? I still think Emily needs that done, but it hasn't happened.
    Make sure you get that trip to the playroom today, although he obviously had a good time playing in his room. Still...taking him on a stroller ride is close to normal!!

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  5. JenNovember 12, 2009 at 10:13 AM

    Love the new skill!! Sorry about the feeding issue - I know that frustration! Sometimes it's the increased caloric concentration that causes the discomfort and puking, and consequently the decline in PO feeding. If they drop it back to 20 or 22 cal/oz, you will know if makes a difference within a day or two. Fingers crossed that Jaime will be a big chowhound ASAP, so you guys can go home!!

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  6. Brian and Carrie BakerNovember 12, 2009 at 10:46 AM

    I laughed out loud about your "watching paint dry" comment! How true is this!! I swear the phrase "tolerate his feeds" still makes my skin crawl! Ah the joys of feeding issues. My heart just aches for you being away from Jared and I am so happy you will get to see him this weekend. Being away is just awful and unnatural! I told Brian it makes me feel like 1/2 a mom to only have 1/2 my kids with me! Zane has confided in me that he likes it when I have to go away sometimes, because then he gets extra types of attention and special things he may not normally get when we are all home and "normal". Kids...:) I am praying that Jamie starts "tolerating his feeds" soon and you guys can get the heck out of there! I loved the pictures you post everday, Jamie is the most beautiful baby and Jared is so handsome, they both have your smile! I would love to meet them in person some day!
    Blessings to you all!
    Carrie and Noah

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  7. Tiq HashimNovember 12, 2009 at 8:58 PM

    i'm just a passer by reader and i feel very sorry for jaime to have suffer something like that in a young age :( .it kinda breaks my heart coz he's too cute..

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