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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Monday, April 20, 2009

A Visitor from Cleveland!





Jaime had another day of weaning. His blood gases have been so good that they weaned him down on the vent settings 4 different times. I get so nervous when they start messing with stuff, I like to think that it's OK to leave good enough alone. The drs. on the other hand like to be proactive. I suppose that's better for Jaime, but gosh darn it, I get so nervous about that!
Jaime's echo showed that his pulmonary hypertension is starting to slowly improve. This needs to significantly improve before we can even think about the repair surgery. Over all he's had a good day! He was even up most of the day wiggling and opening his eyes...of course, every picture I took with his eyes opens looks like he's on drugs. Legitimate look, I suppose, though he's not on very many! :-)

This afternoon Uncle Scott came all of the way from Cleveland for a whirlwind one afternoon trip to meet his new nephew. He even surprised us all by making a pit stop in Columbus to bring Jared and Grammy back for another visit! (Thanks, Scott!)
Jared just loves his baby brother. Can you tell by all of the stickers he put on himself? He's got them on him like he is a police man protecting his brother! HA!

As for me, I'm feeling OK. I was a bit swollen again today. This time it was both in my hands and feet (darn, cankles!) I'm very happy to say that I'm managing with Motrin during the day and the combination of that and Percocet at night. I will be getting my staples taken out on Wednesday. The thought of that is just horrifying...EWE~
(Jeanie, I'd love to hear your funny story over Grater's Ice Cream, but you're right, it will have to wait until laughing doesn't hurt! LOL~ouch!)

So, that's the update for today. The doctors seem pleased with the direction Jaime is taking. He's very comfortable (so far) going along with the drs. plans for him. We'd like for you all to pray that Jaime continues on the road to stabilization, which will in turn allow him to have his repair surgery sooner.

We can not thank you (and the staff at the RCNIC) for all of the love and support you have shown for all of us, we appreciate it so much! It is certainly helping to make this difficult time much easier for us!

Hugs,
Sheryl

4 comments:

  1. Continuing to think of you guys. I feel like each of these babies has a little piece of my heart and it makes me so happy to hear Jaime is doing well. Much love and many prayers!
    Ash

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  2. I'm so glad to hear that Jaime is doing so well. What a blessing! Keep up the good work Jaime.

    I'll be thinking of you tomorrow when you get your staples out, and I'm also praying that your swelling goes down. I'm having quite a bit of that myself right now, so I totally understand how annoying it is.

    Praying for Jaime and your entire family.

    Love, Stephanie
    Brooke and *Kamryn's mommy

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  3. jamie is just beautiful. You are in our prayers daily and we think of you often. I know the kids miss you Tom.
    Leanne Edmonds from St. Anselm School

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  4. Hi Sheryl, Tom and Jared

    Hope you all know we pray for you each day and I'm sorry it took so long for me to write- It took me a little bit to figure this out! I want to say congratulations and Jaime is quite a handsome guy. I know you have been through a lot and are facing much more. If you need anything as I have said, we are here. Christi misses Jared very much. We will write again soon! Prayers and more prayers ...

    Love,
    Christi, her mom Tami, and our family

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