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Tuesday, October 26, 2010

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.

7 comments:

  1. Hang in there! You are doing a great job. I know it must wear on you some days and you probably feel pretty overwhelmed, but God won't give you anything you can't handle. He knows you're tough! Keep up the good work. Hope the visit tomorrow with the doc goes well:o) Lilly looks great!

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  2. I'm sorry about your nose Lilly!!! that nasty old feeding tube!!!!
    It REALLY IS a hastle!!!
    I know I know... But it does help you!
    it does help it helps you a lot! :):(
    I thought it had broken off inside of you!!! that scared me to death!!!
    but since God has spared you this so long I knew his angels would watch over you.
    love,
    tabby

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  3. Good luck tomorrow, Lilly!!!! Saying prayers:)

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  4. I know it doesn't compare, but it reminds me of when Crystal had pneumonia at 6 (or was it 7?) and they were trying to put the iv in and tried, and tried, and tried. And after 3 tries she was still ok with it... BIG eyes but bearing up well. But by the 6th and 7th times, she was crying and so was I.
    I am now crying along with you and Lilly. xxoo

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  5. Tough day, but so are you. Not hard to tell where Lilly gets it. With ongoing love and prayers, Alana (Nikki's FB buddy)

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  6. Oh, my poor L and her mommy
    what a hard time but what a sweet blessing she is.
    God will have mercy upon both of you. Of course you know that with out my saying...
    all our love mj

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  7. I totaly agree with what Mallories mommy says.
    I know it must be very difficult and heartbreacking sometimes and you wont feel strong always but very tired, but thats normal! But you sure are a great mother, the best mother that Lily can have. Never doubt how mutch you do for you and youre family.
    Big hug to you :-)

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