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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Friday, October 2, 2009

Home Again....

First off, sad news to report, another CDH baby became an Angel today! Vincent Serna was born on September 16th and lost his battle with CDH today. This birth defect is awful...my heart breaks every time CDH takes the life of an innocent baby. Please keep Chelsea and Robert Serna in your thoughts and prayers.

As for Jaime....
Late this afternoon Jaime was discharged from Rainbows. There are was much drama and discussions with the physicians there. I don't want to get into all that happened, as this is not the time nor place to do so. It was decided that Jaime would be better off at home, though his feeding issues have not been resolved in any way. Jaime currently weighs 11lbs. 6oz. (he lost even more weight) On the plus side , he is re-hydrated and was put back on his original formula....for that I am grateful.
I had many discussions with Cincinnati today (actually several throughout the week), they have officially assumed Jaime's care and gave us a feeding plan to follow for the weekend. We have an appointment lined up with Dr. Hellerstein (Jaime's Cleveland Pediatrician) on Monday for a weight check. After that, we will call Cincy for further instructions. The goal is to keep Jaime out of the hospital! We are due back in Cincy on October 14th, so we have to keep him good for the next 12 days...we can do it! Please wish us luck this weekend!!!! Also as a side note, Jaime has been officially deemed "home bound" with the exception of appointments, so if anyone wants to visit (and are "healthy")give me a call, as we will not be taking Jaime out anywhere for a while.

Some happy news to share...Jaime, once home, held his bottle! I was on the phone with my mom-we were talking about my grandma-not good :-( and Tom said "Sheryl, look." There our little baby was, feeding himself a bottle for the very first time! This was HUGE!!!! We were so proud of him! Oddly enough, he drank a total of 4oz (OK, over an hour, but 4oz nonetheless). This is the most he has taken in one sitting since before his bout with pneumonia. Here are a few quick shots I got of Jaime feeding himself! (He looks so much like his daddy!)




In other happy news, Jaime's buddy, Carter was successfully extubated today! WOOHOOOOOOOOOOO!!!!! We hope that he continues to improve and gets the high flow down steadily (without incident) to the nasal cannula! Congrats and way to go, Carter! (Can he be any cuter? To think that Jaime was bigger than him at one point...tee, hee!)


A final note: happy birthday to Bev Luken, Anna's mommy (Anna is our 8yr old LCDH Cincy friend). Hope your day was GREAT!

Wishing everyone a wonderful weekend and please say some prayers that Jaime tolerates his feeds and gains some weight again by Monday!

Thank you to everyone who supported us during our latest hospital stays, we really appreciated it!

6 comments:

  1. Sue mom to Emily LCDH 1-22-08October 2, 2009 at 9:31 PM

    Jaime, you are awesome!! Feeding yourself 4 oz of milk is FABULOUS! Keep up the good job eating this weekend and stop with those explosive diapers : ) Be a good boy for Mommy so she can get some much deserved rest.

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  2. BethOctober 2, 2009 at 10:59 PM

    Very impressive Jamie - 4 oz! Holding the bottle all by himself is a big deal. He looks adorable. Hope he gains some weight this next week! Good luck keeping the germs at bay until the Cincy trip. Say "hello" to the CDH doctors from the McBrayers.

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  3. *super dude and super dog*October 3, 2009 at 12:39 AM

    Welcome Home!!!! I hope he continues to eat well and stays out of the hospital. Silly boy--tell him he can flirt with the nurses when he VISITS! :)

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  4. Kathryn OlmsteadOctober 3, 2009 at 3:17 AM

    YAY you are home! I'm so glad!! I hope he continues to eat well and not go back to the hospital! :)

    And I would like to say- Kayla sometimes takes an hour to eat 4 oz! And never holds her old bottle! haha!! :)

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  5. Bev LOctober 3, 2009 at 5:00 AM

    Thanks again for the birthday wishes. You are too sweet. You can keep Jaime out of the hospital. I am telling you Debbie can help you through anything, she is like a guardian angel.
    Take care of yourselves and have a great weekend.Good Luck with everything. Talk to you soon.

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  6. hollyOctober 3, 2009 at 9:15 AM

    Hi,

    I wanted to give you info on Ruby's flowers.
    She really loves the Lamaze Chime Garden (thats what it's called). I got them at Toys R Us. Her PT really likes them becasue they stand tall and she has to sit up to play with them.

    I'm so glad Jamie is home!

    ReplyDelete

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