Judah's New Look

I can predict the future after all. Not in a good way, because the NG tube is not what I wanted, but at least it wasn't a surprise. And, as usual, Judah is handling it better than I! That jolly boy just has no idea that he's sick! The feed eval. didn't go well at all. So, until further notice, we need to give him 30 min. to eat about 6 oz. (after 30 min. baby burns more calories than he's taking in). Whatever he doesn't take in that time he gets via his lovely new accessory. (Who says guys can't accessorize?) He'll have another swallow study done right after his palate surgery to determine whether or not he's still aspirating; until then at least we'll be thickening his liquids and using the NG...unless he gets stronger & takes all he needs orally. I think I'll call the pulmonologist to see if he's thinking of doing a scope or not. What if the problem is anatomical or fixable somehow, other than just being a matter of swallow coordination, and he could get the aspiration problem corrected before June? And does any doctor even know? That's one of the things that is so frustrating about this whole situation. There are no easy answers, no one doctor knows everything or even a fraction of it, and there isn't one solution. I feel like between the 12 or 15 doctors we see for all the diagnoses and health problems, they're all just trouble shooting. It's one thing after another. One doc. says this, another one says that, one wants a weight every week, one wants one every other week, one thinks this is fine, another one thinks it's a problem, and on and on and on. I'm sorry. I know my attitude stinks right now, but it is what it is. I'm frustrated. I want answers and solutions and progress for my son, and it's nowhere in sight right now. I know in my head we'll get passed this, but I feel somewhat buried in "medicalness" right now. And now I look up and see my sweet, beautiful boy sleeping on his boppy. Peaceful. Content. Oblivious. He's such a precious gift. He doesn't deserve this.

So that's that for right now. I did ask one of the doctor's nurses if I could get my own scale and do all this weighing from home. Doc's on vacation right now, so I don't know who she asked, but they basically said no. I fought for this one. She'll talk to the doc. on Monday and I can call on Tues. I'm determined not to back down. A trip to the hospital every week just to get weighed? Seriously? Seriously. I don't think so.

Practically speaking, we need wisdom. Lord, I NEED WISDOM!!! These doctors need wisdom! And not the kind that will come from their own knowledge or experience; the kind that only comes from You. Jared & I need wisdom to know what questions to keep asking, what decisions to make, how best to advocate for Judah, what to respectfully fight and what to graciously concede. Lord, I need You here. I can't do this. I just can't. I look at Judah and see this amazing little person that You knit together to be just so, and I look at me and see inadequacy and fear. Phil. 4:13. Ok, good point. 2 Cor. 12:9. Yes, another excellent reminder. Right, I get it. I'm not alone, and only in my weakness and dependency on You will You give me Your strength and enable me to do what You have called me to. *sigh* Christ in me can do this. Ok. I think I can move on now.