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'...

For those of you getting excited by my title, no, she is not completely eating by mouth yet.  But she is completely on real food! Evie just switched this past month to a different "formula" because Pediasure Peptide 1.5 density seemed to be causing her to lose weight.  She had been gaining on 1.0 density, but we were trying to help her to cut down on the amount of formula needed to maintain weight and still be interested in food.  Once she started losing weight, the GI doctor theorized that she was having absorption problems with the Pediasure, and suggested that we just switch her to Real Food Blends or Nourish. Both of these blends are real, blenderized food, and I was a big fan of getting her off of formula.  Not only would it be healthier in general, but she might become more regular as well (sorry, TMI, but not sorry). Back in our Pediasure days, we used one can a day and poured some in through the g-tube throughout the day, as you would any liquid with the ...

When I was growing up, I thought summer school was only for children who didn't do well academically.  Now that I have a child with special needs, I'm learning that summer school can mean very different things. Evie just finished her second day of summer school.  To her, we go in a different entrance and there are new teachers and new classmates.  But as soon as she saw her new classroom, she went right for the blocks, and I knew she would be just fine.   If a child has an IEP, it's not an automatic thing that they will qualify to have Extended School Year (ESY) services.  It has to be apparent that the child will regress without school, or take a long time to relearn certain skills due to lack of school during the summer.  Some kids qualify for therapy sessions during the summer, and others, like Evie qualify to go to the summer school program for 1 month.  There was no question that Evie qualified for ESY when the IEP was first written--I did...

Evie's 2-year follow up with Cardiology was today.  She had open heart surgery at 5 months old to repair an ASD and VSD, and since then, her heart has been strong, and her pulmonary hypertension has resolved.  I celebrate her heartiversary every year to remind us of how far she has come. Taking a 3-year old for an afternoon of an EKG, Echo, and Cardiology follow up takes a lot of energy.  Especially when said 3-year-old does not want anyone to touch her.  "Evie, these are stickers!"  Evie did not think that EKG leads and stickers were fun at all.  She would not stop wailing until we took them off. The Echocardiogram part was a bust.  The technician gave up when Evie start flailing around, even though I had her arms in a lock and my legs around her legs, while my husband tried to hold the iPad and hold her legs as well.  Evie's look of blame when she twisted around to ask me for help was an arrow through my mama heart. We finally got to se...

If you don't know what a "threenager" is, the term refers to a 3 year old who already shows signs of being a teenager.   "Evie, you just took Mommy's seat.  Can Mommy sit down and get out of the airplane aisle?"  [Evie grunts and shakes head no.] As Evie gets older, we run into new challenges that stretch us in our ability to find creative ways to help Evie adjust to new experiences.  The latest new experience was a 6 hour plane trip from Boston to California and back, with the fun stuff in between. Here are some new insights we learned about traveling with a non-verbal, g-tube feeding, non-walking 3 year old who is curious, feisty, affectionate like a clingy koala bear, and only bribable by iPad time and hugs. 1.  Food transportation.  Evie eats blended food orally, so each week I prepare a variety of frozen foods, blend them up, and freeze them in cubes.  Transporting these for a 6 hour plane ride and then 4 hours in the car (darn LA traffic!!...

This post is dedicated to Evie's first boyfriend JJ, who lounged next to her on the carpet as they g-tubed peacefully together at the same time at the ripe age of 6 months.   He has moved onto greener pastures and now tries to sit on every woman's lap possible.  At the age of 3, he is a lady killer! We love you, JJ!  <3 I wanted to share some of Evie's favorite blended foods.  It's a tough balance when we have to fatten her up, but I have to make blends that taste good by mouth too.  Whatever she doesn't eat orally is thrown in a blender with some formula and put into her tummy by g-tube.  She eats 3 meals a day orally and gets supplemental formula/blends to help her with her growth rate. We just had our most successful Nutrition visit yet since trying to lessen the amount of Pediasure!  Evie doubled her growth rate from 5 grams a day to 10 grams a day!  I wanted to take a picture.  Hearing "well done" at this visit is enough to ma...

Something I never thought I'd have to do when I first got pregnant was that I'd need to explain to the other kids in my daughter's class what's different about her.   And honestly, after spending a month in preschool, I don't think the other kids see too many of the differences.  The letter is more for the parents, so they won't be caught off guard if a child goes home talking about a "plastic tube that goes into Evie's stomach," or asking why Evie has a wheelchair and a walker. Evie modeling her pink wheelchair!  Insurance wouldn't cover the light-up wheels I selected (for some reason...) Our preschool team has been amazing, and one of their suggestions for the transition was to write a letter to the other families in the preschool class, explaining the g-tube in case the children asked about it.  They put me in contact with another mom, whose tubie is now in 3rd grade and flourishing. So a lot of credit goes to this mom, who gave permi...

Evie stands voluntarily now! The thing about having a toddler on a feeding tube is that they become more active, and burn off the calories you work so hard to put in to gain weight.   It used to be just using Pediasure formula to fatten her up when she was an infant, but it's more complex now. She actually weaned off eating with the iPad (whew!), but I wanted to show that she likes chocolate pudding! In the latest chapter in the saga of helping Evie to gain weight, we hit a plateau where we were giving her formula by tube and then feeding her pureed foods orally, but she was still growing at a slower rate than optimal.  At that point, the GI doc was concerned, and we could start seeing her ribs, despite adding oils and Duocal supplement to every meal.  We were so close to weaning her off formula, and then she started learning to walk and going to school to learn to be a big girl!  It felt like a step backwards to add back in more formula.  I was so...

I didn't cry.  Everyone warned me I would cry, but I think I was too busy trying to unfold Evie's walker and help Erick with her wheelchair, and forgot to be emotional about dropping off Evie on her first day of preschool.   Evie didn't even notice that I left.  She saw kids playing with trains, and I plopped her down on the rug and left.  I kissed her goodbye and she didn't even blink.  She was too busy looking at the trains. The preschool coordinator came to meet us, and took over, and that was that.  We left our precious cargo in SCHOOL! One of the moms introduced herself in the hallway.  She said that her kids were told about Evie before she came, and they were all excited to have her there.  That meant so much to me. Evie actually has a Rifton chair that has a picture of her on the back so that other kids don't take her chair.  Rifton chairs provide more support for a kid who needs more support to sit for long periods of time. ...

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 ...

Along with growing taller, Evie is growing in feistiness.  She has definite opinions about everything from socks to books to how she should eat.  I didn't read on any of the Down Syndrome websites that there seems to be a theme of stubbornness in our kids (although every kid is still different!).  But as I've learned from other families, stubbornness is a very real thing.  First, she has the genes for stubbornness from both sides of the family.  Then she seems to have the extra copy of special stubbornness.   But the thing is, she's a cute stubborn.  She sticks out her lower lip and crosses her arms as she emits a "Gaaaah!"  Which just makes me laugh at her. Most of the time. Today I am not laughing.  We decided last night to wean her off the iPad while she eats.  I was inspired by the other parents on the tube-weaning Facebook group I joined, and while I was warned that it would be tough, it is still hard to start the journey. ...

...and I meant this as an adjective and not a verb.  Evie is eating!!! I haven't blogged in awhile, mostly because of being busy, but also because I have been focusing my energies on getting Evie to eat.  Since I last blogged, Evie has transitioned to a new nanny and also gone through a developmental leap (which I never knew about until I had a baby!).  In the midst of all of that, Evie decided she had zero interest in eating food by mouth. Zip, zero, zilch.  She would turn her head away, and if we begged her too many times, she started to cry.  My biggest fear was a food aversion, so we just backed off... ...and silently freaked out that Evie would never eat.  Well, I freaked out.  My husband almost never freaks out.  I like to think that my freaking out/intensive planning sometimes gets this family to bigger and better places.   My husband may have a differing opinion. Over the past couple of months, Evie had gained enough weight for ...

The greatest guessing game of all is...how to motivate Evie to eat.  Someone was surprised that we actually count the number of BITES (and not ounces) that Evie takes. Well, that's because that's all she'll eat by mouth.  We are averaging 5-8 bites a day, although every once in awhile she'll eat more than 20 bites for our nanny, who is definitely our MVP. The end goal is to cut down on her g-tube feeds so that she'll be hungrier. When we get clearance for having gained back all the weight she lost this winter, we will start the adventure! In the meantime, we definitely have learned some helpful tips for those for which eating is not second nature. Here are some of the finer points of eating we have learned: 1.  A child with oral aversions or sensitivities can be very sensitive to where the food falls on her tongue.  When we feed her with a spoon, she does fine with food on the tip of her tongue.  But any food towards the middle of her tongue makes her gag. ...