We know it isn't the last one. Since Sadie has started feeding therapy, her eating has greatly improved! Just changing little things like oral stimulation before meals, leaving the spoon in her mouth longer so she has a chance to suck the food off herself, and thickening her foods have all helped SO MUCH! I no longer worry about screaming through meals or spitting everything out on me in disgust. She also seems to be making the connection between being hungry and eating to take care of that discomfort. This is huge for us! She's even started trying to grab the spoon as I put it into her mouth! It's like she wants to feed herself!
Two weeks ago, we stopped nursing. We had been tapering off for a while, and the two times she'd be nursing during the day I doubt she was really getting anything substantial. She'd nurse in the morning, which there was probably something there at that time, and she'd nurse in the afternoon to quell afternoon-meltdown. That was just I-need-mommy time. So, when the teething hit hard, she just started refusing to nurse, and I started refusing to fight her about it. Then she started doing such a good job with the sippy cup, that it wasn't a big deal. But that was only that week...she hasn't really wanted the sippy cup since. All the liquid we've been giving her has to be squirted from a syringe directly into her mouth. Which, as you can imagine, can be pretty unpleasant for everyone involved.
So, at our appointment today I had two goals. The first goal was to figure out why Sadie won't eat or drink more, and the second was how do we get her to? What we learned wasn't shocking, but it still hurt a little. Sadie is NOT getting enough to eat, but more importantly, she is NOT getting EVEN close to enough to drink. Let's put it this way; when the doctor told me she needed between 24-27 ounces of liquid a day, my jaw hit the floor and my eyes popped out of my head. Giving Sadie more than about 3 ounces at once (and that's pushing it) is flirting with puke, so HOW IN THE WORLD are we going to get 8 times that in one day?! She also needs to be eating between 800-850 calories a day...but we'll get to that.
Here are some things we came up with:
1. We're going to try a motility medicine that she will take 3 times a day, about a half hour before she eats. The purpose of this medicine is to encourage her digestive track to empty and give her tummy more room for food. The idea is that with an empty tummy, she'll have room to eat a lot more food in one sitting! This will definitely increase her calorie intake.
2. We're also going to put her back on reflux medicine. It's a different one this time, and something that might be better for a bigger body. Her reflux and puking has really improved a lot, but she still gets those juicy burps that you KNOW have to sting a little...and sometimes after she eats she still does a lot of arching and looking uncomfortable. So, hopefully we can help make her tummy feel better, and that will make her more eager to eat and more excited about it.
3. We're going to drown her in PediaSure (not really, but 24 ounces feels like it!). Not only will this provide her with nutritional supplements and basic fluids, but it will also give her a lot of extra calories. Because 24 ounces of PediaSure is like 720 calories, I doubt I'll be giving her all 24 ounces of liquid as PediaSure, but alternating it with milk, water, and juice. This will help get her to her daily calorie intake. (Side note: we've already tried experimenting with this. When we got home, I started giving her about an ounce of liquid every half hour. Just this afternoon and evening, Sadie drank 7 ounces. That's more than she sometimes gets all day. And she seemed to tolerate this pretty well, in addition to eating her regular meals)
4. We're going to continue to add oils and high calorie foods to her diet. The Nutritionist suggested that we shoot for 2 Tbs of oils in her foods throughout the day. That's almost 250 calories right there. Plus if we can get her to eat more in quantity, as well as drink more PediaSure, we should have no problem reaching 850 calories a day. We can do this!
In a little less than 2 weeks we will go back to visit the doctor again (although he won't be there...vacation maybe? But we'll see the Nutritionist and the Nurse Practitioner) to weigh in, see how the meds are going, and possibly discuss a NG tube (this is the kind of tube that Sadie had when she first came home from the NICU, it's the kind that goes in her nose down to her stomach). The idea of the NG tube would be to supplement her normal daily intake. What would happen is that we would feed her and give her liquids normally throughout the day, then anything we weren't able to give her would go into a nightly drip administered through a pump. This would not only be a good way to supplement, but it might also be easier on her stomach since it'd be so slowly administered over a long period of time. Ideally, this would be a temporary solution while we continue to work on drinking out of the sippy cup and tolerating larger quantities of food and drink. I refuse to let this be a long term set up.
I have mixed feelings about all of this. Part of me feels like this is my burden to carry, so I'm the one (and Brian is the one) that should be responsible for getting the right amount of food and drink in Sadie's tummy each day. But the amount that she needs compared to what she's getting now is a little overwhelming and scary. Part of me also feels like having that NG tube would ease the burden some. But at the same time, we need to consider if the benefits of having the tube would outweigh the damages. And will it be a slippery slope toward a straight-G tube (that is surgically placed in the lining of her stomach)? Is that bad? I just don't know. I fight and fight and fight the tube...but if it's the best way to keep Sadie healthy and growing, is it such a bad thing? I think a lot of my fighting it has to do with that tiny little bit of denial I'm still holding onto that this is who my child is. This is the last thing, and I don't want to lose this fight because I've already won so many others (and I like the feeling of winning!)
Luckily, I have a lot of support. Many of the other parents of special needs kids that I know "virtually" have already given me good advice. And I know that I have a lot of experienced moms out there to talk to about the whole thing. In some ways it's so scary, but in some ways it sounds really nice to not have to always be looking at the clock and forcing food and drink down Sadie's throat, fighting her about it, risking puke (and all my hard work going to waste), getting frustrated and stressed out.
So, we'll see. We have 12 days. She'll start her medicines tomorrow night. Then the clock starts ticking. Stay tuned to see how this will play out.