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, November 16, 2009

7 Months Old!

Happy 7 Month Birthday, Jaime!

Dare I say that we got "good" news today on Jaime's "7 month" birthday? Looks like, if all goes as planned, that we will be home by the weekend! :)

Jaime's stats: Head circumference 43cm, Length 25 1/2 inches and Weight, I'm pleased to announce is 14lbs 6oz! That 30 calorie formula we're pushing into Jaime sure is working...at least in the gaining weight department! (He's having HUGE pooping issues, though!)
Jaime is taking about 85% of his bottles by mouth with the rest of them being gavaged through the NG. (All that means is we "push" it through a syringe into his feeding tube.) Yesterday he had some squash and today, apples and prunes (for the obvious reason mentioned above). He is still off of O2 and satting well for the most part. He seems to tire more easily, but I think he will get stronger with time. He's been waking up only once a night for a feed, I hope this trend continues. We actually upped his daily intake so that we can eliminate a night feed. Hoping that in the future, we can up the daily intake again to eliminate night feeds altogether.
Jaime started to tolerate his feeds over the weekend, which is great! We just need to work the pooping thing out, he's back on daily MiraLax and prune juice.
Developmentally, Jaime is doing very well! It's amazing what having organs in the right spot will do for a person! HA! He's now kicking both legs and reaching with both arms. Before, he was very limited to moving the left side only. Also "fun" news to share, Jaime has been seen pulling up on all fours during his PT sessions. This all on his own, too. I think some form of crawling is just around the corner for Jaime...maybe by Christmas? He's also starting to roll again. If you remember he was doing this in August and early September, then he re-herniated and stopped doing many things.
Mentally, Jaime is appropriate for a 7 month old. He's "talking" a lot, trying really hard to "repeat" sounds. "Hi" is one word we can get him to say and "Mmmm" for Mama. Liz and Amy were trying to get him to say their names...no such luck, sorry girls! :) Jaime is also VERY nosy! He CANNOT be interrupted during a feed or he does not finish it. We have to literally pull the curtain, shut the door and not let anyone in the room except who is feeding him, so not to have any distractions. He's sooooo funny! He's back to being his "normal" happy self!
As for the hematology issues, well, I had a fairly long discussion with the hematologists today. There was talk of sending Jaime home on Factor which would mean he'd also have to come home with some sort of semi-permanent IV access. Well, I told Hem/Occ how strongly I was against the idea of sending him home on Factor. First of all, a placed IV can be a huge source of infection not to mention a bleeding risk in itself. I had many other reasons, too, Hem/Occ listened and agreed as long as I have follow up they were OK with no home factor except for when he has bleeds. Also, the jury is still out as to whether or not Jaime has a platelet disorder, this will be monitored as he gets older. (Testing for it requires a significant amount of blood, no one is quite ready or willing to dive into this one.)
As for follow-up, you all know how I feel about the previous hospital we sat at for 21 days undiagnosed, so I'm thinking, after talking with several people down here and other CDH mom's that we will be doing follow-up at Akron Children's Hospital. It's about 40 minutes or so from our house, but worth it if the care is as good as we're told it is. Our surgeon, Dr. Tiao has referred us to his friend up there, along with others, so that's our plan for now.
I think that just about sums everything up! Wish us uneventful days this week so that we can go home! Thanks!
Enjoy the pics!
This is a picture of the new wing of Ronald McDonald House from Jaime's room.

Jaime just finished his squash!

Jaime in his bath, what is he looking at?!?

Yep, that's right, folks, Jaime is watching TV in his "hot tub."

His, "what did I do?" look.

Chillin' in his thermal underwear....I jut LOVE these!


Have a good one....

3 comments:

  1. Sheryl, That is wonderful news that Jamie is tolerating his feeds! My Carter is just now really starting to eat (taking up to 6 ounces at a time)! So glad to hear Jamie is doing well respiratory wise as well. To think you may not have to deal with the O2 tank anymore? Hope you guys get home this weekend!

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  2. I am so incredibly proud of Jaime! He has made HUGE progress, but I KNEW he could do it, namely the bottles! He just needed more time to heal.
    Hooray for the baby food..keep it up Jaime! Congrats on winning the Factor battle. I hope this weekend is the one for heading home, as long as you're ok with the timing! HA!
    btw, Mike and I are also big fans of the one piece thermal outfits, although Emily's don't have trucks : )

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  3. Oh I'm so excited that home is around the corner!! :)

    The pic of him watching TV is sooooo much like Kayla- she will contort her body as much as possible to see the dang tv! Too funny! :) He looks great!! :)

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