Skip to main content

A Tribute to the IV Pole from a Tubie Mom

Last night, for the first time since she was born, Evie didn't get a formula feed overnight, and she didn't even get water overnight (for hydration).  She slept like a typical child in her crib, with no hookups.  I didn't have to hook up the 24" right-angle Y-port extension tube into her tummy and through a hole in her Zipadee Zip to the G-tube pump.  My husband didn't have to prep the 500 ml feeding bag and wait until she was asleep to hook up the feeding tube.   He didn't have to wake up at 5 am to turn off the g-tube pump when the alarm said the feed was done.  We didn't have to wake up because the flow was interrupted by her tossing and turning and the alarm didn't have to go off.  SHE didn't have to wake up soaking wet because there was a leak, or because the tube somehow became disconnected overnight.



With that, I want to post a tribute to the IV pole.  It has faithfully stayed by her bed, standing guard and holding her food for 2 and a half years.  It has alerted us with rolling sounds when she wakes up and starts moving around in the middle of the night.  It has now become an interesting toy to Evie, which is another signal that it is time for the IV pole to be relegated to a dark corner, until she gets her next cold and we stand in front of it, considering whether or not we need it because she won't eat.

But, Mr. IV pole, we are so done with you!  I am ready to put my daughter to bed by just changing her diaper and zipping her up in her sleep sack, kissing her, saying our prayers, and putting her in the crib.

The only thing left is venting her tummy before bedtime, but she just gave me the biggest burp in my face last night, so it's only a matter of time until we stop that too.  Thank you, God, for all the cool medical skills I learned, but thank you even more that we are moving towards getting rid of it!

So when can Evie get rid of it, you ask?  Well, when she feels like eating enough to continue up the growth curve.  Right now, she's getting 1 full Pediasure bottle a day to supplement, so we are close!
Thanks for your prayers and for cheering with us!

Comments

  1. Oh, my goodness! This stage of life has been so exhausting for you. I know you don't resent the work because of your love for your child, but praise God for the light He has given you at the end of this long tunnel. Evie is in great hands. She will thrive because of your love and care and attention to detail. She will learn patience and compassion from seeing you act that out. She will learn about God's love and forgiving grace through your sacrifices. You are building a legacy with her each time you get up in the night, each time you care for her medical needs, and each time you make sure she's doing what she needs to do. You are doing such a great job!

    ReplyDelete
    Replies
    1. Thank you so much, Susan! I appreciate your encouragement!

      Delete
  2. I have a question for you. My grandson has a g-tube. He is two. Right now we use a type of netting? Used in hospitals for burn victims to cove his g-tube mostly so he doesn't play with it. Do you have a better solution? I was thinking of sewing some kind of band to go around his stomach, not sure what would be a good material.

    ReplyDelete
    Replies
    1. Hi Momma Ski, if you search for "g-tube" in etsy.com, there are a lot of selections for bands to go around the stomach. I would say to look at those and see what kinds of materials people use. There are fabric ones as well as sturdier ones that have openings for access! Thanks for reading!

      Delete

Post a Comment

Popular posts from this blog

Repost with a giveaway! From Straitjacket to Starfish: A Shark Tank win

Update:   Hi all, I am doing my first giveaway! If you read my blog post the other day on the miraculous Zipadee Zip, then you know how this thing has changed our lives as parents.  The makers of Zipadee Zip liked my review so much, that they offered to help me do a giveaway. All you have to do is 1) "Like" their Zipadee Zip Facebook page and 2) leave a comment about why you could use a free Zipadee Zip on this post! The contest begins Wednesday, May 27 at 12:00 AM and ends on Sunday, May 31 at 12:00 AM.  Good luck! a Rafflecopter giveaway  ------------------------------------------------------------ Original post: There was a point in time when I was just proud I could swaddle teeny tiny Evie with a hospital blanket. Then she came home and started busting out of the blankets, and woke herself up all the time. Her arms flailed and her legs kicked while she was sleeping, which of course woke her up. But then she got bigger and craftier, and I...

Going public: Down Syndrome Awareness Day and what it means to us.

Starting this blog was a big deal for me. It's hard to throw out there in conversation that my baby girl has Down Syndrome, because that extra chromosome makes people view her differently. But because it is Down Syndrome Awareness Day on 3/21, I'm going public. Do you know why it's on the 21st?  Because of the 21st chromosome having an extra copy! So far, Evie has just been our beautiful baby girl who is learning to smile and reach for things. But as she grows older, I want our extended circle of friends to know, so that they can treat her as a typical little girl who may be a little delayed in her development, but will want to be included just like other kids.  I want the other kids to play with her and to learn that little girls with disabilities like to have fun too. Our story about our diagnosis is here .   Now that we've met Evie and know what we're dealing with, it's not SO scary as it was before.  Still overwhelming sometimes , but I wouldn'...

Why is Sophie the Giraffe so awesome?!

My husband and I had a discussion about why Sophie the Giraffe is so beloved and effective, yet so simple.  This rubber giraffe is $18-25, and Erick was just astounded that it is so expensive.  I told him that EVERYONE has this giraffe, and he asked why it was so special.  This post is dedicated to my dear husband. A rare photo without her oxygen cannula Evie LOVES Sophie.  So the question is why? 1. Who wouldn't love a toy with its own Wikipedia entry and Facebook page?  I knew Sophie was French, but had no idea she was so old.   2.  Why not a penguin, a duck, or an elephant?  It's the neck.  A giraffe has the perfectly sized neck for an infant to grab and practice motor skills.  Then why not an ostrich?  The neck is too skinny, and no ears for baby to suck on! (You can tell I am sleep deprived, because I am thinking of the ideal animal for a rubber toy.) 3. No batteries required.  Since Evie was born, our batt...