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, July 22, 2009

First call to Cincinnati...

We've been home for 6 days now...so far things have gone well. Jaime and Jared have sure kept us on our toes. We are still trying to get all of the appropriate equipment to have our make-ship NICU at home, that's slowly happening.

Anyway, today, I made my first call to Debbie at the High Risk Clinic in Cincinnati. (I thought going 6 days without an incident was pretty good...HA!) Jaime seemed like he was having issues with bowel movements and was literally screaming bloody murder when we laid him down. He also was doing this 15 to 20 minutes after each of his feedings overnight-totally not normal for him. Well, we also noticed that his urine output was next to nothing. I checked his diaper before his 1:00 A.M. feeding and medicine...it was totally dry. (Jaime threw up his entire 10:00 P.M. bottle last night, so I knew he had nothing in him.) He was supposed to get 2 diuretics at that hour, but I didn't give them to him. His morning diaper had literally a drop of urine in it. I called his pediatrician and the nurse said to just watch him. After a few more hours,I called Debbie. She was very nice and talked with Dr. Haberman (one of Jaime's Neonatologists in the RCNIC). She said to continue to hold his diuretics, drop his 30 calorie formula to 20 calories and give him up to 1 ounce of prune juice. They are thinking that he got behind with his fluid intake. Also, he had a MINOR cut on his cheek from his little nails that bled for a total of 7 hours. They said this probably affected him more than we thought.
I have taken Debbie's advice and so far Jaime's had 2 wet diapers, no poopie ones yet. Debbie told me she'd call in the morning to see how he was. He's acting completely normal, just a little sleepy.

Other than the output issues, things are going well. We are even catching some "Zzzz's." Tom and I have worked out a feeding/medication schedule as to who does which ones. (I do the late ones, he does the morning ones, I know, no one's surprised by this schedule!)
We're a little bummed at the crummy weather we're having here. It's only 71 degrees and rainy. Jared really wants to go to the splash park with his friends, but it's just not warm enough. Hopefully, Mr. Sunshine will warm things up soon!

Here is a picture of Jaime trying really hard to roll over yesterday after a diaper change.



Jaime sure does LOVE ELMO! HA!



Just a couple of things...we are still accepting donations for our Hemophilia Walk on August 29th. We are also looking for people to Walk with our Team. If any of you are interested in being on the team, I'll need to know your shirt size by next week so that we can purchase you a team t-shirt for Walk Day. You can email me that info at sltrost@yahoo.com. You can register or donate at the following web address: http://my.e2rm.com/TeamPage.aspx?Lang=en-CA&TSID=238254


Also, as a final note, please continue to send positive thoughts Carter's way. He had his surgery Monday and is still working on stabilizing post-op! Thank you so much, I know the Adler's appreciate it!

Have a nice evening....

4 comments:

  1. Told you that Debbie is the BOMB DIGGETY! If anyone can talk you through a crisis, she is the one.

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  2. I'm so glad that y'all are home safely. Jaime is just getting so big, and I'm so proud of his CDH fight. He is so strong, and so are his parents. We are still praying for y'all!

    Much Love,
    Stephanie

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  3. I just found your site and am sooo happy to have found it! I'll be thinking of you guys and checking back every once and again! Glad to hear your baby is home!!! Chanda

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  4. Never a dull moment wih you guys! I think I made it 2 weeks with Ryan, same issue.
    Jaime looks great, can't wait to see you all again.
    Did you know Debbie is Anna's godmother? Bev has her on speed dial ;-)
    Are you sure you aren't still in Cincy...rainy and cooler here as well :-(
    Hugs to all of you!
    Jeanie

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