Guess who hit 19 pounds today?!
Since February when she was put on the NG tube she’s gained ALMOST 3 pounds. This may not seem like much to you, heck, I can gain 3 pounds just making eye contact with a brownie. But for Rae, 3 pounds is great!
So my GI today gave me 2 options.
Take Rae off the tube. Not wean, just cold turkey take her off and see what happens. Have twice weekly weight checks and see where she stands. If she loses too much, she goes back on the tube and we start talking more permanent measures of a feeding tube (g-tube, mic-key button etc). OR! If she does well, we introduce milk and pediasure and try to get her off of the Elecare after we see that she can maintain her weight on her own without the tube. If she goes back to declining, we talk more permanent feeding tubes.
Tube stays in. We start introducing her to dairy. Monitor her vomiting and make sure the dairy doesn’t set her back. In 3-4 weeks if she does well with whole milk, transition her to pediasure and see if she likes that better than the Elecare. Then at our next appointment try to take her off the tube. If it doesn’t go well then, talk about a more permanent option for feeding tubes.
Both options, pretty decent. Both can go very well and our weight issues are over, or very poorly and end up with her having the g-tube placed.
The gritty details:
The GI wasn’t going to try to wean her today. She was going to suggest adding the dairy back in first, but I asked about weaning. Apparently she’s JUST at the 20th percentile where she’d consider weaning her. But to be honest, I’m so DONE with the NG tube. She keeps throwing up. She’s been sick EIGHT TIMES since February when they put it in (she has an increased risk of infection with the tube). I hate holding her down and putting it back in 2-4 times a week. I feel so terrible for her, kids constantly staring at her, pointing to her tube. No one stares at her just because she’s cute, they stare at her because she has this huge yellow tube covering her pretty face. It makes me really sad for her. So selfishly, I just want the tube gone.
But at the same time, I worry about how a huge of a chunk of her calorie intake will be cut out. She’s on 750 ml of formula. Almost 900 calories of her intake a day is in her formula. When they cut it out, she’s solely retaining on whatever she eats and drinks by mouth. Which, her intake is normal for a 15 month old. She drinks 1-2 bottles a day and eats 3 whole meals and 2 snacks. She eats well, but even on the tube, with the extra 900 calories a day, she has weeks where she loses weight. So I’m concerned about that.
The advantage to trying to get her on dairy before weaning is she may like the pediasure and milk more than she likes Elecare, so she may be able to drink more of it and give her more calories. But we’d have to wait a whole month and a half until we see the GI again to try to wean. Which means 6 more weeks of checking tube placement, stressing about aspiration and throwing up and her pulling her tube out, constant uncomfortable stares and being known as the “young mom with the kid with the tube in her nose”. Have I mentioned how much I hate the NG tube? Well, I hate it.
The reality is though, as my GI mentioned today, with Rae’s abnormal labs that had markers for mito, if she does truly have a mitochondrial disease, she’s going to need the g-tube either way at some point. It’s very clear that she cannot metabolize her food properly, but we don’t know if that’s a permanent thing (if she has mito, it is) or maybe something she has, or will outgrow (hopefully!). So after a geneticist, neurologist, both my pediatricians and the GI have mentioned, we are being conscious that a g-tube may or may not be in her future either way.
Overall, this was one of those appointments where even with the abnormal labs hanging over us, and the cautiousness of my GI that she may not wean well, I felt really good about it. For once Rae isn’t considered failure to thrive. For the past 9 months she’s had “FAILURE TO THRIVE” written on all of her release papers and the scale was not our friend. But today, I’m finally feeling confident that no matter what we decide is the next step, God is going to steer us in the exact direction we need to go.
“Do not worry about anything, but instead, pray about everything. Tell God what you need, and thank Him for all that he has done.”