Defeated.

This post is going to seemingly pale in significance to what I posted about yesterday, I realize. However, if I've learned one thing over the past year and a half (I say that a lot, don't I?), it's that every person and every story matters.

Sure, Jeramie and I have had to endure more as parents than many of our friends, but does that make their stories any less important? I've had friends tell me something that's wrong with their child, from an ear infection, to a more serious illness, and qualify their story with, "but I know it's nothing compared to what you've gone through." While that statement might be true, their child's ear infection is just as important to them as Ethan's vibrating chest is to me. And, although my concern for Ethan will always be heightened, being that he is my child, I am still capable of showing concern for another child who might not be "as sick".

I don't know what it's like to lose a child, but those mamas who do still express concern and interest for the children who are still fighting battles. We're all in this together, from a congenital heart defect, to cancer, to a splinter in a finger. It's all important, and it all matters.

So, while I am in the midst of being heartbroken for these families, pouring out prayers for peace through it all, and asking y'all to do the same, I am also going to ask you to send up a few for Ethan (and myself).

I took him to the doctor yesterday for this nagging cough (which he now has an antibiotic for), and they went ahead and did his weight check while we were there. Many of you probably saw my post full of excitement on Facebook a couple of weeks ago when it appeared that he had gained 12 ounces in about as many days. Well, it seems as though that was just an illusion. The doctor two weeks ago was comparing a naked weight with a fully clothed weight, and Ethan's jeans, t-shirt, and tennis shoes were enough to make us think he was on the up and up.

The reality is that his naked weight from yesterday, compared to his naked weight at his 18-month well visit, has dropped by about half a pound. I could have cried. I feel so defeated, and completely out of ideas. The pediatrician was, of course, not happy about the weight loss and got on the phone with some people at Duke. He's in the midst of finding a nutritionist for Ethan, since the one that was originally assigned to us seems to no longer be in the system.

Yesterday was also the day we just so happened to have an appointment with Ethan's feeding therapist. I relayed the information from the pediatrician, to her, and she agreed that we've got to do something. Ethan is teetering at a weight that's starting to scare all of us; he dropped from the 25th to the 10th percentile in a matter of four weeks. If he goes much lower we'll be looking at "failure to thrive", which equals bringing the G-tube back into play. Everyone knows how hard we've worked to get him to eat by mouth, and going back to tube feeds now could possibly undo all that we've done.

So, here's the plan. We continue to feed Ethan as we are; adding butter and heavy cream to mashed potatoes, Carnation Instant Breakfast to his milk, fatty oils to grits, giving him spoonfuls of peanut butter before bed ... you get the idea. I told our feeding therapist that, in an attempt to fatten him up, I feel like I'm clogging his arteries in the process. So, if any of you out there have some good high-calorie, heart-healthy options for a picky toddler, I'd love to hear them!

We're also going to try a supplement called Benecalorie, which is a Nestle product. In just one and a half ounces there are 330 calories, 33 grams of fat, and 7 grams of protein! If that doesn't put some weight on his bones, I really will beat my head against the wall.

I am really struggling with "being anxious for nothing". If I'm honest, I'm very worked up about the whole thing. I feel like I've prayed and prayed and prayed for God to take this worry from me, to allow Ethan to thrive, but I just keep getting it all thrown back in my face. I am thankful that Ethan does eat, that he wants to eat. I am thankful that the cardiologist has been able to rule out this being a heart issue, and I'm thankful for a separate team of medical professionals who are wanting to do best by Ethan. Heck, I'm most thankful that my child is even alive and breathing today, and that we have this issue to deal with at all. But, I'm frustrated, and I don't want to be.

I want us to trust Ethan. I want to trust his body to tell him when he's hungry or thirsty and I want to trust that he'll relay those signals to us. But, the truth is, when you've got a kid like Ethan who has had so much stacked against him in the way of eating, that's so hard to do.

So, I'll just keep doing what we're doing, plus some. I'll keep concocting bizarre recipes to maximize his fat and caloric intake. I'll keep offering him chocolate pudding three times a day, and I'll keep sneaking pureed vegetables into his macaroni and cheese. Above all that, I'll keep praying. I'll keep begging God to grow my son into the healthy and strong person his heart needs him to be, even when it feels like I'm not being heard.