It's a love-hate relationship

When my oldest daughter, T., was about 3, she would tell people she had a "love-hate" relationship with Bob the Builder. (Yes she has always been very expressive.) I remembered her expression today after having another struggle with the NG feeding tube. And I understand what she means.

I LOVE the NG tube because it is keeping my baby nourished, gaining weight, and alive! I HATE it because inserting it and all the things that go with it can be really time consuming and stressful.

Today when I took T. to piano lesson, I left Lilly's pump and milk at home. Instead I took along a bottle so we could practice bottle feeding while T. had her lesson. Lilly did OK - she drank a few milliliters. Then when we got home, I hooked her back up to the milk pump, then went to go do something.

T. suddenly yelled that there was milk coming out Lilly's nose. I stopped the pump and checked the tube. It had about come all the way out! I was shocked as no tube has ever budged on Lilly before, but stayed taped in place. I felt terrible because I hadn't checked it first. (Learned that lesson! I'll be checking a lot more frequently now.)

Ok fine. I trashed the tube and got out a new one. But Lilly began crying and gagging everytime I started putting it in. At one point I thought it went in smoothly but it came out her mouth! Soon I felt like crying right along with her. I couldn't figure out why it wasn't working right. I've done this before without problems! Finally after a really upset prayer to God, the tube went in smoothly. So smoothly in fact, that Lilly hardly whimpered, even when it went through the "gag zone" (her throat). Whew ... thank you God ...

Tomorrow afternoon Lilly has an appointment with her cardiologist. I assume he'll have an echocardiogram done on her, or at least an x-ray to check the pulmonary artery band in her heart.