Evie the Extraordinary and Her Mommy: The Journey As We Go

Hi friends, Evie is 6 years old and has had a feeding tube all her life. Yesterday was the first day ever that she had no formula put through her g-tube.   At 5 weeks old, we broke out of the NICU (finally!) after getting a g-tube placed in her stomach so that she could gain weight at home. We started from using an overnight feeding pump and feeds every 3 hours on Pediasure formula, and praying she wouldn't spit up or set off her pump alarm overnight.   We then figured out how to space out the feeds to transition from a NICU schedule to a real-life schedule.   We then dealt with feeding aversion, with Evie turning away or crying when offered the bottle. As she got older, she accepted a little food by mouth, but not enough to sustain her.  I furiously searched Facebook groups and read articles, trying to figure out how to help her leave the tubie life.   We switched from Pediasure to Real Food Blends to let her body get used to less milkshakes and more real foo...

You know you're a mom when your phone rings, and you recognize the number as the one for the school nurse, and promptly hold your breath, imagining the worst.  Usually they say right away "Evie's ok," and then continue on.  Today they didn't say that, and I was having a minor heart attack with every second that passed when someone who WASN'T the school nurse was calling me FOR the school nurse.   Apparently there was a substitute nurse today (and for the next 2 weeks), and she was having trouble getting Evie's g-tube extension connected to her stomach port.  Somehow the whole g-tube button came out of her stomach, and the one other time this happened at school, the school nurse knew exactly how to get it back in and didn't even call me until it was back in.  Not today.  The person calling me said that she was calling for the nurse, and that Evie's g-tube button fell out, and would I like to come and put it in?  I said, well, I'...

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 ...

Evie has definite musical preferences.  No, Mommy, I will not look at you while you sing The Muffin Man, and no, I do not know him.  But if you sing about that Glorious Spider going up the water spout, I will smile at you and look up into your eyes like you are a genius. With the same curiosity that led me to look up why Sophie the Giraffe is so awesome , I decided to look up the Itsy Bitsy Spider, also known as the Incy Wincy Spider. The Itsy Bitsy Spider was first published in 1910 in a camp lore book as an adult song.  Except it was originally the "Blooming Bloody Spider."  I'd much rather have a tiny spider than a bloody and expanding arachnoid, so I will keep using "Itsy Bitsy."  I found all this out from Wikipedia if you're interested. As one of our good friends (DT) pointed out, Itsy Bitsy Spider is a song about hope, which is why Evie likes it so much.  I did a quick analysis of the note in my head and it's just 5 notes over and over a...