Tuesday, May 26, 2009

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.


  1. Lily pulled out the tube for a reason...she's smart enough to know it irritates her! Great job Lily, Vera only got round to that skill at about 4 months. I'm impressed! I totally share your dislike for the tube insertion...

    but just to share, we got Vera to 15 pounds through painstaking work of tube feeding. hang in there...

  2. http://mylittlevera.blogspot.com/2008/07/tube-insertion-101.html

    don't we just wish we didn't have to do this!

  3. Sweet Lily, it's so great to see your babe looking so lovely. Her lips are just so adorable! Sorry that the feeding is difficult. I hope that one day soon she can feed without the tubes. love Shannon (Oliver's mom)

  4. You are going so great with her! It is going to be fun watching her grow!

  5. Mittens! We totally didn't think of that! At 4 this morning Annabel pulled her ng tube out of her nose and had a look of complete relief as she held it in her hand. We had to try bottle feeding and she managed 7 mL before she grew too tired to go on. At 9am the nurse came by to reinsert the tube and it just breaks my heart to hear Annabel cry, as I know she just hates it.

    Hang in there, mommy. This is a long, scary road we travel but each minute we spend adoring our babies makes them and us stronger.

    Jorge and Carrie

  6. I think Lily is like her mom and dad- willful, hopeful and totally not liking the tube like you not liking her having it. Hang in there- just look how far you have come. If you think about it wouldn't we pull the tube out if it was irritating us as much as we all know is bothering Lily? Try not to ask questions- God has granted you this time with Lily -tube and all. You are always in my daily prayers and thoughts. Miss you.