Day 7, 11:15 PM

It's crazy to think that just a week ago we were preparing for an anxious night of sleep before an early wake up to walk JG over for her heart surgery. It's been some week. Thanks for the many kind expressions we've rec'd and the many prayers we've felt.

It's been an odd day. Jennifer stayed with JG at the hospital after deciding it was best for me (Jason) to come home and try to give Jacob and Jensen some sort of normalcy. I love those two and being with them is a breath of fresh air. We can only hope that 24 hours from now we'll all be under one roof. I also need to return to the responsibilites of work in some capacity beyond what I've done via blackberry, voicemail and e-mail this past week.

I should take this time to mention that Jacob and Jensen have been troopers. While well cared for, they've exhibited maturity beyond their years with their willingness to be shuttled around to 4 different houses the last week and taking each move in stride. Of course, the owners of those 4 houses love them dearly and we're thankful. Nonetheless, we recognize that not all kids would roll with it like those two have. We continue to trust that the Lord will use these experiences for His good in their lives.

We'll continue to rely on good friends and family to fill in the gaps with helping care for J & J as plans are in place for them on Tuesday and Wednesday. We had dinner with friends, I had groceries come to our door tonight, walked into a clean home, the grass was mowed, and Jacob's lunch will meet him at school tomorrow. We appreciate the way our friends and family are assisting during these challenging days. It's humbling to be on the receiving end of generosity, but we're learning to just say "yes" (tough as it might be).

So back to our odd day....As mentioned, Janie G's temp dropped last night (Sunday night), so they wanted her blood which we she didn't give up as usual (even to the most highly trained nurses). Therefore, they cannot do blood tests to determine any infection etc. Instead, they are relying on old-fashioned observation which takes time (hence, Jennifer and JG remain at the hospital). JG's EKG appears fine, her heart rate and oxygen levels are good, her blood pressure has been normal and her heart echo looked "pretty good" in the words of the cardiologist. There is still some fluid around the heart that is not unexpected after surgery and the right side of her heart isn't completetly up to speed but that too is not a surprise. The left side of the heart, which is a little small right now, is actually working really well which is important as that is the side that pumps blood to the body (the right side sends blood to the lungs). Therefore, we continue to get good news about her heart's condition. If we can get that low-temp up or at least give no other reason for concern, we'd probably be stamping our passport home.

The plot thickened late this afternoon (you really won't believe this) when I got a call from Jennifer. A chest x-ray had been done on JG as a surgical follow-up measure this morning. While I was packing up the car with my stuff and cleaning up our room at the Ronald McDonald house, one of the residents had come in the room and asked Jennifer how we were feeding JG. She explained about the bottles and then the express feeding to her stomach. He said to her "you mean her intestine, right?". Jennifer said, "no, she used to be fed 'tp' (to her intestine) but now it's to her stomach". The doctor said, "then why is her tube in her intestine?". Essentially, his read of the film was that somehow the tube had ended up in her intestine rather than her stomach. I don't have time to run you through the conversation that Jennifer and I had. However, if that's the case, our excitement over her stomach tolerating these feeds isn't warranted because her stomach isn't doing anything at all. Not good. Now, you may be wondering what the big deal is. I'll explain. The ironic twist to this is that the first time JG got her tp tube in (going to her intestine), it took 3 x-rays to make sure it was lodged in the right place. When it was reset after an upper GI, it took the doctors 15 minutes using live x-ray to get it placed right. Four Sundays ago, I spent 7 hours in the ER with JG trying to get it re-set correctly over and over again after it accidentally came out. Now, when we want to try it in the stomach it accidentally ends up in the intestine. You've got to be kidding me, right? I wish this was a joke. Therefore, now we're left to wonder what long-term impact could be had by keeping her stomach inactive or we pull the tube back so that it dumps in her belly and we spend more time at Brenner while they observe feeds into the belly. Here we thought the last rollercoaster loop was behind us!

All this said, we're not exactly sure what Tuesday holds.

Relative to JG's feeding, we were advised by a speech therapist that we may never get a bottle in JG as the suck reflex is typically present for months 1-3 of life. Since we werent' feeding JG for so long, she may have lost it. She may have to graduate to a sippy cup or spoon feeds rather quickly. Bottom line: There's going to need to be lots of therapy for JG's eating pending a miracle.

Jennifer reports that she and JG had a nice evening together at the hospital.