OT obsessed

Xina and I are working closer to jumping a mental hurdle this morning, though one of us is giving up earlier than the other. It seems all of our primary nurses and our attending doctor seem to think giving Amelia a G-tube as soon as possible is the right thing to do. She's just not picking up on the oral thing and they don't think she will quick enough to get her home anytime soon. Since the ultimate goal is for her to take all eight of her feeds completely by the mouth, they believe she has too far to go. Since it's literally been less than a week since anyone brought up and decided that Amelia has an oral aversion we're both - Xina especially - a little miffed that a) it wasn't picked up sooner (we can both look back at the hints now and get it, so why didn't the OT professionals get it earlier?) and b) everyone seems to not give Xina's and the nurses aggressive
therapy a chance to work. I guess it's because everyone can look back and see how long it's been going on. But, again, it's only been 5 days for us, and Xina is still trying different things that might hit home; it just seems a relatively quick surrender.

So, Xina is picking up some Haberman bottles in the village today to try and use them with her feeding this afternoon. They have a special nipple made for oral aversions and sucking issues which basically drip milk into the mouth as soon as it gives the hint of a suck, whether good or bad. Xina is hoping that the minimal amount of nipple need will help Amelia might do better.

All that being said, if neither one of us sees improvement in the next 5-10 days, we've resigned outselves to the G tube. It's better to do it sooner rather than later, as they have to intubate the kids for g-tube surgeries, and then wean them back down on their O2 support. Knowing how Amelia is, if we weaned her now on O2 support and then still had to have a g-tube surgery in a few weeks, we'd lose all that ground we gained. That's the main reason for everyone pushing hard to get it done soon. We've seen lots of kids, including Amelia's fiancee, go home with the g-tubes, and it's not the end of the world. 3 kids out of 7 in our pod have them, and Amelia would be 4, so it's not uncommon. She's not far off from eating real food at this point, so as we move forward, we hope her continued OT will get her off that g-tube support quickly.

Nevertheless, we'd rather not go this route if we can avoid it.

Other notes - the endocronologist came by and said that Amelia will need to be on her thyroid meds for at least 2 1/2 years. And, he said jokingly, they weren't even sure if she had a thyroid. Xina didn't find it very funny; but apparently it's just not working. If something kicks in within those 2 years, then she could come off the medication. If not, then she could be on those meds for her whole life. But people live without the thyroid working porperly and take this synthetic form without any ill effects.

She was 12lbs 5ozs last night, and was re-measured at 64cm, or 25 1/4 inches. I'm not quite sure that length is right - it's seems really long in my mind, but primary Patsy did it on the board to make sure (she had actually lost length before.) Nevertheless, she's growing good. It's amazing to go back and look at pictures and think of the stats when she was born - 26cm - 10 1/2in and 480grams - 1lb 4ozs. I had to reshuffle her pod closet and take out a dozen outfits that don't fit her anymore... and those were the ones we never thought she'd fit in. I look at the size of her outfits now, 3-6m, and think they're too large - but she fills them out perfectly well around the middle, although she comes up a little short at the toes.