Day 8, 1:00 PM

I know it's hard to imagine (it's even a little strange for me to admit this) but Jennifer and I probably had more anxiety about nutrition and feeding post-surgery than the actual heart surgery itself. We had so much confidence in the doctors, believed it would be repaired once and for all, and she'd move forward (just as she's done/doing). Feeding a child, on the other hand, is a daily (hourly) grind when that child is not excited to eat orally. To that end, I probably sound like a broken record by continuing to focus on it with these updates.

Nonetheless, today's update is once again feeding related (trust me, we're glad to not be sending out updates on heart complications)...So as I explained, the tube ended up "tp" (in her intestine) on accident. (We've had to reconcile in our minds that the Lord's hand put it there for a good reason). As we surmised, the doctors won't allow her to receive high volumes in a short period of time directly to her intestine. Therefore, we need to go back on slower continuous feeds, or, basically, to where we were a week ago when we turned off the tube. She'll get what she needs over 20 hours with a 4 hour break at which time we'll hope/pray/try to feed her by mouth with a bottle/sippy cup/spoon etc. Honestly, this is terribly defeating as it's really hard to imagine Janie getting desperate for food during those 4 hours given her compliant nature. But we need to pray that as she gets bigger, stronger, older and further removed from surgery that the light bulb will go off on how to suck/swallow.

Like us, you're probably asking "why don't the doctors just pull the tube back into her belly like we thought was happening on Saturday night?" We asked and this is where you start to see that medicine is not cut and dry. Doctors have different opinions on what is safest and best for a 4.5-month-old. While the doctor over the weekend was willing to try a tube to the stomach given there was time for observation, the doctors currently on the floor have greater concerns about refluxing (and fluids ending up in the lungs) and the possibility of a stomach tube migrating up her esophagus and dumping directly into lungs (real bad). Certainly, these are notable concerns and not hard to disagree with. However, barring a miracle of her eating orally, it certainly seems like this is a more temporary band-aid than where we felt we were over the weekend with her stomach (supposedly) showing signs of progress. You see, in the background of all this discussion, is our knowing that the final solution, barring a miracle/slow improvement with her oral eating, would be a surgically-inserted tube directly to her belly. We'd certainly like to avoid that, but an active toddler cannot live with a tube in their nostril indefinitely.

I keep promising Janie that I'll grill her a steak every night the rest of her life if she'll just start eating through her mouth.

Naturally (with sarcasm rolling off my tongue), given a modified feeding regiment, they want to observe her again, so we're hoping that Wednesday becomes departure day. Jennifer basically told the doctor "we're leaving tomorrow (Wed.) unless there's an infection and you can prove to me that I'm putting my child in danger". Pray for Jennifer...she's more than ready for home as she's been at Brenner since last Monday afternoon. When we were originally told 5-7 days, 9 days feels long. Pray that nothing else pops up that would make them want to keep JG in the hospital for observation beyond Wednesday. Given our past experiences, you don't feel like you're out until you drive off of the campus as there can be so many prohibiting factors.