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, November 10, 2009

Playtime in the RCNIC

The only changes in rounds were to add prune juice to Jaime's diet and give him a few shots, honest, that was it. There was some talk of discharge, but the jury is still out as to whether or not Jaime will gain and grow. He has to prove himself by the end of the week. He's still kind of "eh" when it comes to digesting his feeds. He also isn't taking much by way of bottle...about 40% or less. :( The rest goes over an hour through his NG. We'll get there, though! It's a lot of volume for Jaime and personally, I still don't think he's ready for all of it. I asked if we could go up in calories and down in volume, the dietitian was not in rounds today, so I think we'll readdress it tomorrow.

Since rounds were "boring" I thought I would share some EXCITING news with you all today...Jaime went on a "road trip" to the RCNIC playroom. Jaime got to ride in a stroller down to the Child Life office where there is a mirror on the wall and mat on the floor. They have lots of new toys and just an all around different environment from Jaime's boring hospital room. Jaime enjoyed the stroller ride, then got a bit scared when we got in there. The room was very bright and I imagine Jaime was thinking "what are they going to do to me NOW?" Once he warmed up he was fine. He cried (as you'll see in the photos) when it was time to go. HA! We're going to try and get down there a little bit everyday. It was really nice to get Jaime out of his room for a little bit. We even got to see an adorable photo of Jaime's little friend Gia hanging on the wall! (Hope you guys are doing well, we miss you!)

After the playroom, we went back to have Jaime's picc line dressing changed and meet Noelle (OT) to watch Jaime feed. He wasn't all that stellar when it came to eating today, as I mentioned above. He napped for a little bit after that, nearly an hour. (By the way, I failed to mention that Jaime napped yesterday for 3 whole hours...that NEVER happens). Once he was up, I bathed him. Then Kim gave him his Synagis shot, it's a shot all preemies get as well as those with compromised lungs. (I'm sure there are other qualifying conditions, but those are the reasons Jaime is getting the shot.) This shot is given once a month through May to protect against RSV. I believe he gets this until he is 3 years old. From what I hear, it costs $5,000, right up there with one dose of Factor....crazy, huh? Jaime will also be getting the rest of his 6 mos. immunizations in the next few days-we missed our "official" 6 mos. check-up since we were down here.

That's about all for today! Enjoy the slide show...there were too many good pics today to just post a few, so I created a slide show! Have a good night!




P.S. A BIG thank you to Colleen, for taking care of Jared today, sounds like he had fun with Lauren! What a crazy afternoon, huh? ;-) Love ya, hope to see you soon!

3 comments:

  1. He looks really good! Sometimes we all need a bit of time after surgery to feel right again? That is my hope and then he will be eating you all out of house and home. HA! (Borrowed from you!)

    You all have been in my thoughts and prayers,
    Elizabeth

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  2. I'm so glad things are looking up! And discharge is a great word to hear in a hospital! :)

    Keep up the good work Jaime! :) Keep smiling for mommy! :)

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  3. Hoping eating gets easier for Jaime, especially since it means getting to go home. Jaime looked like he had a great time with Val. Emily has and enjoys that same duck rolling toy. I bet your stroller ride down the hall was very slow paced, enjoying every second out of his room.
    Emily is cheering for Jaime to make progress with his food!

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