Camp--Days Two and Three

Lily's having a great time at camp!

Yesterday, she went horseback riding! I was envisioning Lily being held by two therapists, sitting straight up on the back of a horse. Instead, they placed her across the horse's back on her tummy. Not what I expected, but I'm not complaining. I'm glad Lily got the experience. She spent pretty much the whole day at the barn, so it wasn't a very busy day.

Today, Lily learned about insects. Again, they began the day with a morning walk. And, again, Lily spent some time in her stander. But she also had music therapy, read The Very Hungry Caterpillar, painted, decorated a flower pot, and participated in food tasting. (She tasted strawberries, pears, and apples, but Lisa, her camp counselor, said she only liked the apples.)

Both yesterday and today Lily vomited during lunch. Poor Lisa! But as fortune would have it, Lily's OT was visiting camp today and was there when it happened. She asked Lisa how fast she was feeding Lily. Lisa told her that she was giving Lily 3 ounces and then waiting 10 minutes and then giving her the rest. Brenda then asked her how quickly it was going, to which Lisa replied pretty quickly. Ah ha! We think (no, we hope!) we found the problem! It seems the slower we feed Lily, the better she holds it in. Not always so, but usually we find that's the case.

So two more good days at camp overall. Looking at all of the activities they are doing, I think I'm going to try to incorporate similar ones into Lily's day once camp is over. By then, Gabriel will be beginning school, so it'll be a little easier to do so. Besides, with Gabriel in school, I think I'm going to need a little more activity to keep me busy!

Encouraging news

Lily had a modified barium swallow study today to see if she aspirates while drinking her bottle. Nothing much to post about that except to say that it went very well and the speech pathologist encouraged us to continue feeding her with the bottle. Lily is drinking the proper way, and there was one episode of "penetration" of the milk, but it didn't go down into the lungs. Still, we are to watch Lily while she eats to make sure nothing gets down into her lungs, for there is danger of pneumonia if it does. (And I'm happy to say that Lily has increased her intake to 70 ml, but we think she wants more!) Amazing!

We have a doctor's appointment tomorrow, basically to check for weight, but I'm sure he'll listen to her heart, too. Then, on Wednesday, Lily goes for a sweat test to check for cystic fibrosis. I'm not sure of the details, but apparently, either Dave or I is a carrier of that gene. We're hoping for the best because that would be quite a blow--as if having T-18 isn't enough for her to deal with.

Our little traveler

Lily has been on vacation! She's been hiking in the Smoky Mountains where she saw a bear and rode a choo-choo train with Gabriel and her mommy. She wanted to ride the go-carts with her daddy, but she wasn't quite tall enough. Tonight, she gets to go to the Dixie Stampede and hopefully will see some horses. She's spent a good bit of time relaxing in the room, but it's been nice spending time with Grandma and the aunts, uncles, and cousins. And she's been doing all of this without feeding tube!

We've been giving Lily a bottle here and there and supplementing with the tube anything that she wouldn't take on her own. Before we left, she had taken 3, maybe 4, full bottles. Here, she took all but one full bottle, and the one bottle she didn't fully take had maybe 20 ml left, so she had that through her tube. That was Tuesday night. Early Wednesday morning when I was feeding her, I smelled a weird smell. I couldn't figure out what it was. I was smelling her, her blanket. . .even myself. :) When I put her in bed with me, trying to calm her and get her back to sleep, I noticed that it was the tube that smelled. I could not imagine letting ANY more liquid go through that tube, as bad as it smelled, so Dave pulled the tube out, and Lily has gone without tube since then. She's such a champ! The other morning, she ate at one, but didn't wake up until 8:30. . . and I had to wake her up. It was nice to get some extra sleep, but I have to admit that I woke up afraid to check on her. But she was there and I said a quick "thank you" to God.

The feeding issue isn't resolved. Lily goes on Monday to have a modified barium swallow study done to see if she's aspirating. We feed her without tube, so I'm hoping that she's not aspirating now while she eats. Sometimes she does choke a little. I hope that's not what's happening. But the speech pathologist says that even if she's aspirating, she can still learn to take milk from a bottle. That tube is such a nuisance, so I hope we don't have to put it back in. But as much of a nuisance that it is, if it is the way we have to feed her, so be it.

My little kitten has lost her mitten

Lily without her mitten

Lily without her feeding tube

The mitten is an important accessory in little Lily's wardrobe. You see, Lily has this tendency to hook her pointer finger around her feeding tube, right at the nose, and pull the tube out. (She has successfully pulled her tube out twice--once, last night.) The tube, for now, is part of Lily's being, so the mitten helps keep that tube in. Somehow, though, Lily loses her mitten every now and then. No big deal, unless the tube happens to come out.

Like I said, Lily pulled her tube out last night. Dave and I have been trying to bottle feed Lily, and we've been pretty successful. She's taken 10 ml here and 15 there. I think she had even taken 20 or so at one feeding. When the tube came out, we decided to try leaving it out, thinking Lily's hunger would take over and encourage her to suck more. The opposite happened. Baby's burn a lot of calories eating and they lose a lot of energy. Even though we only left the tube out for about 12 hours, we could see a difference in her energy level. We didn't like that, so Dave put the tube back in, which is a traumatic experience--for Lily and for me.

I really wish we could have left the tube out. It irritates Lily (and me--I keep catching it on something), plus, it's no fun to watch her suffer when it gets put back in. Tearing the tape off of her face leaves her face red and irritated and is painful. And the process of tube feeding is tedious:
1) pump for ten minutes
2) put pumped milk into a wasteful 1000 ml bag (Lily takes 60 ml, but we put 80 ml in the bag to make sure we have enough. The smallest bag they have is 500 ml.)
3) prime any water left from cleaning through the feeding pump tube so that only milk is in it
4) get air bubbles out of the tube. Pump is now ready for feeding
But we have to prepare Lily. . .
5) take a syringe and insert it into her tube. Pull out until there's resistance (we don't always do this step because there's resistance at the beginning, so it's a wasteful step.)
6) take syringe out. Pull out about two ml of air
7) put syringe back in. Get stethoscope and put it on Lily's belly. Push 2 ml of air into Lily's belly. We're listening for a swish or a plop to confirm placement of the tube. I guess if we don't hear that sound, we'd have to reposition the tube. (I hope that NEVER happens.)
8) pull same amount of air back out with syringe
9) put pump tube into Lily's tube. Turn pump on to begin feeding
10) clean syringe with hot water
I have to admit that feeding is pretty simple. Lily is supposed to lay on her right side at a slight angle. Sometimes we prop her on a pillow. Sometimes we hold her. When we can't hold her, it's pretty convenient. Still, I hate the tube!
Once feeding is done. . .
11) clean out wasteful bag with hot water (a tankless hot water heater would save A LOT of water since we seem to have to wait forever for the tap water to get hot)
12) let gravity do its job and run the water in the bag through the tube (gravity does not always do its job and that frustrates me beyond belief because I have to finagle the bag and tube to make the water pass through)
13) hang the bag back up on the pole
OK. I'm sorry to have bored you with the details, but I just wanted to share with you what feeding Lily is like. It doesn't take as long as it seems, but the details (and I get too bogged down with the details) make it seem so tedious. Try doing this at 2 AM and then again at 6 AM, and you'll see what I mean.
But like I said, the tube is a part of Lily's being. Now that's we've tried not having it in, I'm not quite so sure she could survive without it right now. But here's a question Dave asked (it's not a pleasant question). What if Lily pulled that tube out for a reason? I don't like thinking about that question. For now, I'll be selfish and not give her credit for being able to think that way.