Tuesday, Tuesday

Man...Tuesdays are proving to be pretty unique days. I LOVE them because Jeramie typically works from home, but this is because we also schedule most of our appointments then. Other than the busy-ness of getting to multiple appointments in one day, Tuesdays haven't been that bad.

Until yesterday.

We were scheduled to go to feeding therapy, the cardiologist, and the pediatrician. The first two didn't go quite as well as we hoped, and the third didn't "go" at all.

We've been having some trouble getting Ethan to eat from a bottle at home. He rocked it out with the therapist last week, but has been pretty reserved since then. Yesterday he gave her a taste of what we've been experiencing (crying after every suck, disorganization, not latching on very well...) and she wants us to go for a swallow study. This will show us if Ethan is a "safe swallower". One thought is that some of the milk may be going towards his airway, which scares him and, in turn, makes him cry. This study will let us know exactly what's going on with how he swallows. For whatever reason, Ethan is freaked out by the milk that comes out of the bottle nipple. We just need to find out if this is physical (swallowing issues) or behavioral (texture/sensation issues). Our therapist did say that it is not uncommon for babies to skip bottle feeding altogether and go straight into taking solids by mouth. So we'll see. For now, we're not doing anymore bottle practice at home, just small drips of milk around his Soothie. This definitely isn't the direction we want to be going, but as I've said before, we've learned to go where Ethan tells us...however fast or slow that may be!

As for the cardiology appointment...blah. I REALLY like our cardiologist, don't get me wrong, but those appointments have been the worst for me. They are a harsh reminder of how sick Ethan still is. And I HATE saying that. The Echo showed that Ethan's heart function still hasn't improved. The right ventricle is in pretty bad shape, and I think the doctor (and we) were hoping it would be showing some improvement by now. He considered admitting us back to Duke, but ultimately decided that they wouldn't have done anything more than he did in our 2 1/2 hours there. This is something that will have to be watched very closely, so we'll be going back next Friday (the 19th). There's also a small concern that Ethan's heart rate is a tad-bit high, so he's going to keep an eye on that as well. We're thinking this is just "how Ethan is", but he doesn't want to miss any potential problems. It's so scary to know that we were a small step away from being back in the hospital. I'm having trouble dealing with the reality of Ethan's condition, but also not letting that steal my joy of having him home and seemingly healthy. As I said, blah.

We never even made it to the pediatrician since our cardio appointment went way longer than expected. It was just a quick visit to give Ethan the rotovirus vaccine, and we were able to reschedule it for tomorrow afternoon.

Ethan (and we) are still in desperate need of your prayers! I know my God is bigger than any cardiac arrest and can restore Ethan's heart function. The catch is still knowing He is good even if that doesn't happen. My prayer is that Ethan will recover from such a traumatic event and be able to live a happy, active life. Please pray for the restoration of Ethan's heart and that Jeramie and I would find the strength we need to sit through appointments like yesterday.

We love you guys!