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, August 7, 2009

Two things I failed to mention yesterday...

I can not even believe that I didn't write about this...yesterday was the 2 year anniversary of the death of my Grandma Buttari (my father's mother). She was so incredibly awesome, your typical little old Italian Grandma. We miss her so much. She would have loved Jaime, I wish she could have met him. My Grandpa (who passed away in 2004) always called her his Angel. There were plenty of times that we thought she was watching over Jaime and helping him while he was struggling to survive in the NICU. Sometimes Jaime will just look at nothing and start giggling...we often wonder if it's Grandma playing with him. People say that babies can see angels....wouldn't that be something? I just wanted to mention that...as I pretty much hate August 6th...I suppose yesterday was no different!
Here is the last picture I have of my Grandma with Jared...just days before she passed away! Forever in our hearts, Gram!



The other thing I didn't mention was that yesterday, Jaime was officially 16 weeks old. I can't even believe it! Really, the time has just flown by since April (since December, really). I can't believe that we left for Cincy when it was cold and snowy and came home in the middle of summer. Now, we're getting Jared (and Tom) ready for school which starts on August 25th. CRAZY!!! By the way, we just found out today who Jared's first grade teacher will be...it's Mrs. Morris?!? I don't know who she is yet, but I'm sure she'll be great. We get to meet her on August 24th.

Back to Jaime...
He weighed 11 lbs 6 oz yesterday and is STILL 22 in. long. I think he might just be short and "round." HA! He is developmentally appropriate. He can roll himself over to his side, then gets stuck. If he's on his belly, same thing...he can roll to the side. He has recently started to "help" hold his bottle, too. He reaches and grabs for toys now and giggles, too. He's really a good baby. Jared was a great baby, too. We have, however, learned, on this little trip to Cincy, just how "good" Jaime's lungs are. In fact, Jaime has lost his little voice in the process of showing us how well his lungs can be....wahhh, wahhhh, wahhh!!!! ;-)

As for the trip home, besides the crying, we were able to see another set of 3 trucks carrying wind turbine blades. This was a different crew than yesterday, as they were parked on the side of 71 South. The reason I even mention this, for those of you who don't know....Jared is obsessed with wind turbines and wants to be a wind turbine "fixer" when he grows up. Too bad we didn't have more time (we had to get the van back to Avis by 1:00 P.M.), otherwise, we would have turned around to get a better look. The use of wind power is so fascinating...we're pretty sure that the turbine was going to go up right where they were lined on the side of the road. (We hope so, then we can see it every time we go south). When we got home, Jared found a Lego Wind Turbine set at legos.com, it looked just like the ones that we saw. He said he's going to ask Santa for it...good idea, Jared! ;-)
Other than a sleepless night for Jaime and I, things are status quo. We were even able to wean Jaime down to 1/2 liter O2. Maybe we can get him to 1/4 liter soon. As a side note...Debbie from High Risk just called, Jaime's lab work was...get this..."perfect." Huh! Crazy....guess the huffing and puffing is just going to be Jaime's norm...fine with us! We are even aloud to "ditch" the KCL and NaCl, along with the Diuril (as mentioned yesterday) in one week! 3 meds gone...Woohoo!!! Now the only mystery we have to solve is the brady episodes...which by the way, he hasn't had a single one since the heart monitor was put on him...figures!

Well, Mr. Jaime just pulled Elmo on top of his head in his play pen, so off I go to "rescue" him! HA!

Wishing everyone a GREAT weekend, it's going to be a HOT one here!

2 comments:

  1. I had a grandma like yours, straight off the boat from Ireland when she was 16! They taught us so much, right?
    Glad to hear Jaime is doing well! Jared, well, he is so ready for 1st grade, he will have so much to offer, a wealth of info...reminds me of someone else I know who is a survivor of CDH, I believe you have met him...LOL!
    God bless you all!
    Jeanie

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  2. I've followed Jaime's story since before he was born, glad to hear his check-up went well! Our R-CDH'er, Leah, is going to be 4 next Tuesday. We live in a state where lots and lots of turbines are going up--it is very cool to see the parts traveling down the interstate or all lined up ready to be installed. My husband is an engineer and works with the monitoring of the wind farms and their energy output--I may have to get him that lego set for Christmas! :)
    Kristyn

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