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NolanBiliLight

One day I came down to the NICU to see poor Nolan in his little bed, with this bright light shining on him and this weird mask covering his eyes.  The nurse said Nolan had some jaundice, which is typical of babies who are born a little early, and the light was called a Bili Light, which was a treatment to help the jaundice along.  The light had to stay on, and so did the mask, until they were happy with his tests.  Grant had some jaundice too, but not as much as Nolan, because he used the Bili Blanket, which was this funky light blanket that would be the envy of EDM fans worldwide.  And he only needed it for like a day.  Nolan had his for several days.  It was pretty depressing because the mask meant you wouldn’t see his little eyes and it almost made him less human, if that makes sense.  

Day after day, we’d come to the NICU and see Nolan under that light.  Occasionally they’d give us a short break to hold him or just love on him a little bit, but mostly it was hands-off, talking-only stuff.  It sucked.  I knew he needed it, but it felt like he was making zero progress.  I mean heck, isn’t it enough he had a heart defect?  Now he has to be all covered up, just laying there to be poked and prodded.  It made me feel awful for him.  For possibly one of the first times (and definitely not the last), I wanted so badly just to be able to fix him.  I would’ve done anything.  Guys are supposed to want to fix things, and here I was helpless.  Meanwhile, Grant was just a few feet away and he was able to wear clothes and be held.  While Nolan only had our voice…

 

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About Chris Perez

My name is Chris aka HLHS Dad: I’m married with 3 sons. I love photography and the New York Yankees. I’m an admitted pizza snob and amateur balloon animal maker. Every now and then you can catch me being serious…but most of the time I’m quoting random commercials or lines from Pee Wee’s Big Adventure.

Posted on October 26, 2013, in NICU and tagged , , , , , , , , , . Bookmark the permalink. 4 Comments.

  1. Hi there – I’m loving your blog – it’s giving me so many of the details I need to know – I’m adopting a baby girl with HLHS, DORV, pulmonary stenosis in December. I was wondering if the baby would be blue when she came out…but I guess not. When will Nolan have his Norwood? Mine won’t have the Norwood, she’ll just have the BT shunt in the first week, then the two other surgeries. Look forward to future posts! Thanks!

    • Hey Leslie, thanks for reading! Nolan had his Norwood 7 days after birth: Dec 17th, 2012. Since I only recently started this blog I have A LOT of catching up to do til now. But spoiler alert: he’s 10 months old and doing GREAT. There will always be challenges, and every HLHS kid is different, but we’ve come a long way in taking care of heart kids. Please don’t hesitate to continue asking any questions!

  2. Glad to hear he’s doing great! Hope you continue to blog about your journey as other HLHS parents are surely looking for someone they can relate to.

    • Thanks for reading! Nolan is doing great and we’re very blessed. It’s been wild to recall all these things: it keeps everything in perspective. And if I can even help one person, it’s all worth it!

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