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!

Tube Weaning and Mountains of Furniture

First Mommy, and then a note from Evie!

Mommy says:
At this time a year ago, we did a happy dance if Evie opened her mouth for any food.  She started eating more purees from pouches, and showed a love for apple and mango flavors.  But we were only counting the number of bites she took last August.  Fast forward to June, and we are counting the number of ounces she eats.  She averages 12-14 ounces a day, plus 2 boluses of 120 ml of Pedicure Peptide during the day.

She is still mostly on purees and yogurts, but we are now mixing in mashed egg yolk and blending real foods like chicken thighs and rice and mac and cheese. She still won't pick up any food and put it in her mouth, except for deigning to lick something once in awhile.  She is also sipping more liquids by mouth too, although we are counting by sips and not ounces.  She has shown that she likes my flavored seltzer water.  That wins the record for most sips!

I read on one of my many Facebook parent groups that blending real food for their tubies helped their children to increase their appetite.  In the past week, I have been blending more real foods like casserole or quinoa mixed with other foods, and am seeing a significant difference in Evie's energy levels, appetite, and willingness to eat.  Maybe we lost the first iPad wean, but I'm happy that we got the thumbs up and a "good job" from the GI doctor.  It helps that Evie has decided that she likes climbing all our furniture and burns calories in the process.  Our living room furniture has now been rearranged to a less dangerous arrangement.

Next step: weaning off her night feeds.  We are down to 50 ml of Pediasure Peptide at night mixed with a bunch of water.  We are going to say goodbye to the 50 ml next week, and then start moving the water to the daytime (somehow).   This means that she will be a lot easier to care for at night, and poor Erick doesn't have to wake up at 5 am to shut off the pump!

Evie made a list of what we've learned in the last year about helping a (medically-stable) tubie.  Hope that it helps someone!

Evie says:
Hi everyone!  I hope that you are enjoying the summer.  Mommy keeps buying me dresses and shorts.  My SMO braces make my feet hot, so I like wearing less clothes.  Anyway, enough about my feet.  I want to share with you what we've learned about my tube life.

Mommy said to comb my hair, so I did. 

1. Thick and smooth!  That's how I like my food.  Thick so that my tongue knows that there's food on there and I can swallow better.  Smooth so that I don't gag on lumpy stuff.  Some older lady informed my mommy that I have all my teeth, so I should know how to chew.  It's not that easy, lady.

2.  The Ninja blender brings me new foods.  Mommy held off on making me new foods because I was so sensitive before.  But she got brave and started blending foods like casserole or mac and cheese, and they were actually not that bad if she mixed them with applesauce!   A couple things she made were YUCKY.  I gagged right away.  And I made a sour face to convey my disgust. She had to start over with another food.   (Mommy's note: For those of us who can't "swallow" the price of a Vitamix, the Ninja blender has been a godsend and kickstarted me into making more real foods for Evie.)  **On super sale right now, 52% off! If you use my link, Mommy buys me a new book!**

3.  Real foods make me eat more!  In the two weeks where Mommy has made me more real food that I can eat, I've pooped more regularly.  I like to take up a stance at the sofa and quietly stand there until I'm done.  (Yes, I'm standing at the sofa!)  (Mommy's note: I read on a tubie FB group that the parents who had started a blenderized diet for their kids saw an increase in appetite and faster weaning off the tube.  So far so good! And yay for less constipation!)

4. Mountains of furniture.  My uncle Dave does rock climbing and I do furniture climbing.  It gets the juices flowing and the food moving, and boy, do I work up an appetite!  I chuckle to myself when I pull myself up onto the sofa.  You can't hide anything from me now!

#tbt to 2 years ago, when we went rock climbing with Uncle Dave!

5.  Daddy replaces my overnight formula with water.  I find that I wake up more ready to eat now, which makes me peppier for the day ahead!

 Mommy's latest blended concoction, approved by Evie:

  • Annie's mac and cheese
  • raw spinach
  • shredded chicken thigh
  • avocado oil
  • Happy Tot's apple and butternut squash (lots of it)

--> Split up into cubes and freeze, or freeze in 4 oz containers.  I serve Evie about 3 TB and add a pouch to it for each meal.

That's it for now!  Thanks for reading, friends!  I am excited about the fun things I am going to do this summer (but maybe not ready yet for the potty, even if Mommy put me on it for fun)!

Evie's new movie channel on YouTube!

During the pandemic, Evie and Mommy have ventured into the art of making videos.  Once we became better at it, we started a Kids' Youtub...