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July 2013 Moms
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Gastroschisis Awareness - Hockey Fans Come In!

gutsymamagutsymama member
edited April 2014 in July 2013 Moms
TJ Oshie (of the St. Louis Blues and Olympic Hockey fame) recently had a baby - DH and I had picked up on the fact that they were still in the hospital from pictures, but they hadn't publicized why until today - baby Lyla was born with the same defect as Luke (although it seems hers was a lot less complicated). Sounds like she didn't lose much if any bowel, only needed one surgery, and should be going home soon :)


ETA: I had a good chuckle at "the fix is usually straightforward" and the bit about parents being prepared before surgery....
FKA mimi4347: diaper rash magician and unofficial expert on excrement
photo fdcd1f14-730b-4ea3-9fd5-37c8a5575512_zps6b3ccb11.jpgphoto a71807cf-a0c7-4c71-807b-bc4577b61b83_zps4eece2a6.jpg
This kid may not have a lot of bowel, but he has plenty of guts! 
DS born at 34 weeks with (surprise!) gastroschisis turned short bowel syndrome.
131 days in the NICU, 7 trips to the OR, G-button, daily TPN....
We are impatiently awaiting the day we can say goodbye to his girlfriend Ivy for good.
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Re: Gastroschisis Awareness - Hockey Fans Come In!

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  • [Deleted User][Deleted User] member
    edited April 2014
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  • gutsymamagutsymama member
    mermomo5 said:
    I've never met anyone with it that it was that straight forward. I had a friend who had a son the same age as dd1. It was never an easy road but he is currently a very healthy 15 yr old. I hope for the best for their little girl.
    Oh, I'm sure they will deal with some aftereffects for awhile, and there is always a possibility for delayed setbacks. I didn't intend to make light of it. But it sounds like she's headed toward the best possible outcome right now, given the circumstances. 
    FKA mimi4347: diaper rash magician and unofficial expert on excrement
    photo fdcd1f14-730b-4ea3-9fd5-37c8a5575512_zps6b3ccb11.jpgphoto a71807cf-a0c7-4c71-807b-bc4577b61b83_zps4eece2a6.jpg
    This kid may not have a lot of bowel, but he has plenty of guts! 
    DS born at 34 weeks with (surprise!) gastroschisis turned short bowel syndrome.
    131 days in the NICU, 7 trips to the OR, G-button, daily TPN....
    We are impatiently awaiting the day we can say goodbye to his girlfriend Ivy for good.
    Report Reply
  • [Deleted User][Deleted User] member
    edited April 2014
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  • gutsymamagutsymama member
    @mermomo5 You're absolutely right. There are a lot of struggles involved that they gloss over or just omit entirely, and that's frustrating. 

    I think it's probably similar to all the responses we got last summer when strangers saw a NICU badge we had forgotten to take off, or when coworkers asked how he was doing. They would just keep pressing with questions because they wanted to hear that he was going to be fine, that he'd be going home soon, that it was something that could have a "straightforward fix." That was painful on days when we didn't know anything, when we were facing so many unknowns and an indefinite stay in the hospital. But I can understand it - it's alarming enough to think about a baby with its guts on the outside, a newborn facing surgery and struggling and maybe worse, and people just kind of need that reassurance, I think, even when its completely unconnected to them. 
    FKA mimi4347: diaper rash magician and unofficial expert on excrement
    photo fdcd1f14-730b-4ea3-9fd5-37c8a5575512_zps6b3ccb11.jpgphoto a71807cf-a0c7-4c71-807b-bc4577b61b83_zps4eece2a6.jpg
    This kid may not have a lot of bowel, but he has plenty of guts! 
    DS born at 34 weeks with (surprise!) gastroschisis turned short bowel syndrome.
    131 days in the NICU, 7 trips to the OR, G-button, daily TPN....
    We are impatiently awaiting the day we can say goodbye to his girlfriend Ivy for good.
    Report Reply
  • JTA2426JTA2426 member
    She must have been one of those super "straightforward" kids who tolerate feeds from the beginning and have no complications. Seems like that's about 1 in 10 or less, so awesome for them though.
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  • EagleWifeEagleWife member
    Wow, I had no idea that Oshie even had a baby, let alone that baby Lyla and baby Luke shared this connection. Luke and Lyla :) 

    It's always interesting to see how news reports just gloss over something like it's a minor detail when really it is so much bigger than that.

    Wishing both babies the best. 

    *P.S. I finally know how to say "gastroschisis."


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  • gutsymamagutsymama member
    @EagleWife L names are definitely out for any future daughters. I don't mind an occasional Star Wars Luke joke, but I'm pretty sure something like Luke and Lyla would drive me batty :)  
    FKA mimi4347: diaper rash magician and unofficial expert on excrement
    photo fdcd1f14-730b-4ea3-9fd5-37c8a5575512_zps6b3ccb11.jpgphoto a71807cf-a0c7-4c71-807b-bc4577b61b83_zps4eece2a6.jpg
    This kid may not have a lot of bowel, but he has plenty of guts! 
    DS born at 34 weeks with (surprise!) gastroschisis turned short bowel syndrome.
    131 days in the NICU, 7 trips to the OR, G-button, daily TPN....
    We are impatiently awaiting the day we can say goodbye to his girlfriend Ivy for good.
    Report Reply
  • EagleWifeEagleWife member
    mimi4347 said:
    @EagleWife L names are definitely out for any future daughters. I don't mind an occasional Star Wars Luke joke, but I'm pretty sure something like Luke and Lyla would drive me batty :)  
    @mimi4347 - That's pretty funny. I didn't even think of the Star Wars connection. I had to rack my brain to think what the problem was and then I remembered the Princess Lea character. :) (I've never seen the movies.) :D
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