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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Thursday, September 3, 2009

Post for 9/2/09

I went to bed early...OK before midnight last night, so I didn't get to posting.
This morning I decided to post for yesterday.

First off a BIG HAPPY (belated) BIRTHDAY to PAPA! Rumor has it that he turned 69 yesterday! We hope you had a great day! By the way, Jared hasn't stopped talking about the Legoland Ticket that was sent to him and can't wait to go there with Nana and Papa..."in 6 weeks." Where he came up with that number I'll never know!

Next on to our busy day! We had people in and out all day! First Colleen and Lauren came for a visit. After they left, I decided to breakout my Baby Food Making kit and made my first "meal"...carrots (Jeanie, trarrits). This was such an incredibly easy process that I'm kicking myself for wasting all that money on jar food for Jared.
Taa, daa....the finished product! (Thank you, Nana for the kit and thanks, Ted for the new blender.)



Then, Rhonda, the Early Intervention social worker came. We're STILL filling out paperwork to get Jaime set up for EI. Monday the Coordinator of MRDD called telling me she was sending more paperwork to be signed so that Jaime can get his therapy. My goodness, I wish they'd just start working with him already. (Actually today, I'm going to break down and call Rainbow's to get Jaime on their therapy schedule in the meantime.) While Rhonda was here, the respiratory therapist came. Jaime wasn't satting very high yesterday, so I turned his O2 up....nothing happened. He was hovering between 85 and 90, too low for my comfort at home. After rechecking everything, I noticed that nothing was coming through the pediatric flow meter, so I had to directly hook Jaime up to the concentrator at 1 liter. As you can imagine, this immediately bumped his sats up to 100%, especially since he's only been on 1/4 liter. Anyway, the guy came and swapped everything out, he even brought us a pediatric concentrator instead of having the separate meter flow...YEA, one less tube going through my house! :-)
This was Jaime at 4:00 P.M. after Rhonda and the therapist left-mind you, he had been awake since 9:00 A.M.


On to Jaime and his food intake. I swear I spent literally all day feeding that boy. Who LOVES sweet potatoes...heck, who like to eat period???



Jaime ate just about an entire jar of sweet potatoes mixed with oatmeal (over a few "feedings.") and he still drank all of his bottles. He's almost up to 4oz. in his bottles and is on a 24 calorie formula. He doesn't always drink 4 oz, but he does drink at least 100mls. We're so proud of him. He does have a large intake, but he burns a lot of calories just breathing, then you add eating and trying to develop motor skills, it's no wonder he's not gaining quickly.
He's been wearing all of Jared's old newborn to 3 mo. clothes. I'm glad because there were some things that Jared only wore once because he grow out of things merely because of his length.

Back to our busy day...after dinner Auntie Sandy came for a visit. It was nice to see her, Jared had fun showing her Youtube.com videos. Jaime spent just about the entire time eating...this of course, after I rudely awoke him (and he was so comfy...hence the photo above). I really just wanted to make sure he'd sleep at night. (He slept from 10:30 P.M. to 4:45 A.M.) After Auntie Sandy left, Grandma called, so after spending the last 3 days in the house, we went there for a visit. We were there for about an hour. We don't like to leave for too long, plus it gets complicated when we're on borrowed time due to our O2 and battery life of our monitor.

Ok, I'm off to pick up the house a bit...Katie and Jonathan are due over this morning.

Have a great day! :-)

2 comments:

  1. I love that picture of him sleeping on his boppy! He has the cutest FEET!

    Paperwork - I think they give so much to deter us from whatever we are filling it out for?

    Take some time for YOU too!
    Elizabeth

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  2. Looking forward to seeing Jaime's GLOW from the trarrits! He is so stinkin' cute as ever! I think he looks bigger.... and look at his cute bottom and raisng his hand wanting more!
    Say hi to Jared amd Tom from us.

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