Sunday, August 29, 2010

Coming soon...

I am working on writing Luca's birth story.  I will post it when I get a chance over the next couple days.

In other news, if you haven't been following Luca's story on the caringbridge website, here's the latest: Luca is having surgery tomorrow to put in an access line into her chest (a more permanent IV) because doctors will need lots of blood taken over the next couple months for her liver transplant.  At the same time, the surgeon's will put in a g-tube (a tube goes into her belly and we can feed her via the tube).  Because she was on a ventilator for a little while, and her formula is incredibly bitter (protein free formulas are DISGUSTING - even Ian and I tried it to see why she was making a bad face every time we tried to feed her; and as a sidenote, the only protein she gets is from the tiny bit of breastmilk that is mixed in with her protein free formula), she does not like eating very much by mouth.  She eats every 3 hours on the dot, but only takes about half the amount she needs to.  Since she is required to get the exact amount of calories each day, and needs to take all of her meds every 3 hours, we have to push whatever she doesn't finish and also her meds through the feeding tube.

That's the bigger piece of news: our baby girl needs a liver transplant.  It's not that anything is wrong with her liver, but rather that she is missing an enzyme that allows her body to digest protein.  But a liver transplant (likely she'll just receive a piece or lobe of a liver that will be attached to hers) will allow her body to have the enzyme she's currently lacking.  If successful, she can live a much more normal life.  The reason she needs it so soon (in the next few months), is because her defect is proving to be a very severe one (each child's defect varies in severity).  Her body can only handle the most tiny amount of protein (with the help of medications), but it won't be enough for her to continue growing as she gets older.

Hoping the surgery and recovery go smoothly tomorrow.  Then, hoping baby girl continues to get better so we can take her home.  Our estimate: in about 1-2 weeks we can take her home (until a liver is ready for her).  We can't wait!!


  1. Thank you for the update!! I had an IV line put in my chest and a g tube when I was a baby. But I can't even imagine how stressful and painful that is to watch your baby go through. Praying for you guys and of course praying for Luca!

  2. Hey girlie! Glad to hear that she did well in surgery and that there is a plan moving forward. Even more glad to hear that she will be able to come home soon! Keeping your little family in my prayers! Hugs!

  3. Just never-ending huh? I'm sure you're exhausted, but I'm so impressed with your endurance. I have a good feeling about this little girl - she's got fight in her for sure.


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