Day 104

Luckily, Holden has had a couple of better days yesterday and today. He doesn't seem to be in as much pain, and he's been in a much better mood. He's still vomiting just as much as before, mostly in the morning and late at night, but the abdominal pain doesn't seem to be as much of an issue now. His lungs are still wet but improving. That could change in the next few days, as the doctors feel like we need to cut back on his diuretics yet again. His BUN and creatinine are still creeping up, and they're worried about permanant damage to his kidneys if we continue to let them trend up. We're stuck between a rock and a hard place, because we'll end up having to sacrifice one set of organs for the other. If we cut the diuretics to help the kidneys, his lungs will suffer, but if we continue trying to keep his lungs dry and happy, his kidneys will suffer. Lungs bounce back more easily than kidneys, so that's the path we have to take. It really, really sucks to have to make choices like this. Holden is such a fickle medical mystery, and we're constantly trying to figure him out and solve new problems. I hope and pray that we can get him to a more stable position in every area, so that we might finally be able to think about taking him home to wait for his heart. We're not even close to that yet, so many more prayers are needed.

Thank you to those of you who have been spreading the word about CHD awareness week... I love you! For those who have asked about ways to donate or help in other ways, here are a few options to check out:

The first book we received as brand-new, ignorant CHD parents was a book called "It's My Heart"... It was given to us as a gift, and it was an invaluable resource for us while we tried to figure out our new world of heart defects.

Visit them at http://www.itsmyheart.org/ to learn more and donate.

"As the country’s leading organization solely committed to CHD research funding, The Children’s Heart Foundation dedicates itself to bringing health, hope and happiness to children and families impacted by a CHD. CHF has funded over $3.6 million of vital, life-saving CHD research since its inception." - The Children's Heart Foundation

Visit them at http://www.childrensheartfoundation.org/ to learn more and donate.

Remember, even if you don't have the time or resources to donate, you can still help by spreading awareness and reminding your pregnant friends to get an ultrasound at 20 weeks, as well as pulse oximetry testing before leaving the hospital after the birth. A little bit goes a long way!