Author: Scott

The difference four weeks can make. After three surgeries, numerous IVs, a PICC line, two intubations, two hospitals, and a whole lot of care, Evanna is (realistically and medically) moving toward getting home. As of this morning, the remaining issue is which route to take for her feeding: ng tube, like shown in the bottom…

This is the first post I’ve written since Evanna arrived, and it’s not for lack of things to write, but because we’ve just been posting directly to the Facebook Community page. (So check there for all the things that have happened and all the pics posted…) For this post, I’ll summarize it in this: it…

Today was our final pre-Evanna hospital day of appointments. And while they’ve been pleasant visits, I can’t say that I’ll miss them. But it was one step closer to having her with us, so in that way, they’ve been worth it. She passed the non-stress test and the biophysical profile without issue, so there are…

This just showed up in my Facebook timeline.   With having only 9 days to go (assuming Evanna sticks to our timeline…), the reality is really starting to hit in a major way.   And this could be part of that reality…one of the many medical things that we cannot know until after she is born.…

The current question, and I believe it’s a sincere one, is: How are you (or you guys) doing? The answer, also a sincere one, is that we are doing ok overall. Really. Main thing now is working on the logistics of everything: when the kids are coming up, when they get to see JoAnn beforehand,…

From the onset of the news of something being wrong and through the weeks that followed until we had an actual diagnosis, I never had the near-stereotypical breaking down and pleading with God for a particular outcome. There was no wailing, no begging, no attempted deal-making with the Creator. And I don’t mean that to…

  This is a great illustration I came across from Cincinnati Children’s on two of Evanna’s conditions: the spina bifida and the expected hydrocephalus (and as I’ll explain below, also indirectly illustrates the Chiari II malformation).   Normally-developed baby on left; baby with both conditions on the right.   For Evanna’s spina bifida, her lesion…

We’re nearing the date, and if I’m going to be honest, I’m a mix of emotions in the lead up to it. Note that I didn’t write that I’m a mess; I don’t think I am. But there sure is a range of emotions. I’m really excited that she’s almost here. I’m humbled and amazed…

Wednesday this week will be a very busy, busy day…and will give us insight on what Evanna’s clinic days may be like in the future when she goes up to Seattle Children’s. The schedule will be something like this: 10:30am – Leave house; drive to Seattle 12:15pm – check in for ultrasound 1:30pm – walk…

I read a stat this evening that really staggered and upset me. Maybe I should have expected it, considering where we find ourselves as a country. Upwards of 65% of babies diagnosed with spina bifida are terminated…aborted…ended. 65%. It breaks my heart. There are so many things I want to write about that, and for the…