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

Today is my first day back to work full-time.  I feel lucky to have had more time with my daughter, although I wish she didn't have to go through so much during the first few months of her life. This morning, Evie woke up before Daddy and was smiling at me in her pack and play.  That is the best time of the morning for me, when Evie opens her eyes and sees me and gives me a huge sleepy smile.  And then she started grunting.  And pooping.  That's when I woke up Erick.  :)   Turns out she pooped so much, she soaked through her Zipadee Zip and her sheets, and then he changed her, and then she pooped again, and Grandma had to change her.  Yay for Team Moy! And yay that Mommy didn't have to change this one! This morning started off with a meeting, and they greeted me with a big potted sunflower to welcome me back.  That was so sweet! While I eat lunch, I have been reflecting on why I haven't been crying or feeling overwhelmed. ...

Last week, we had 2 big appointments that had to do with Evie's feeding. One was with the feeding specialist for the first time since she was 2 1/2 months old. (So much has changed since then!) The other was with the Enteral Tube GI and Nutrition Clinics.  Evie now weighs 16 lbs! We have worked hard for those thunder thighs! Our feeding goals for Evie include: 1) Drink more from her bottle so we don't need the G-tube 2) Eat more solids 3) Don't choke while drinking thinner liquids (i.e. we are still thickening what she drinks) When you go to the feeding team appointment, you're supposed to bring your child hungry.  Evie didn't seem to mind that she hadn't eaten in four hours. Those are not my genes!  She also decided to show the feeding specialist that she was not interested in her bottle. A head turn into my armpit was her message to us!  Perhaps because 4 people were watching her while she ate. I wouldn't like eating either with 4 people watchi...

Not sure if there is a book called Traveling With A Baby For Dummies, but I felt like I needed it. As someone who is a planner, I of course had to research how to take a baby with a G-tube and multiple medications on the plane to Vegas. The best summaries of what to bring were on the Feeding Tube Association's site , and on the blog Feeding Ray a. The logistics of how to get Evie through the TSA process and how to feed her on the plane, in a hotel, and in a hot environment were not situations in which I wanted to "wing it."   Here goes. GETTING THROUGH SECURITY All our medications were put in a small cooler the size of a thick phone book. The ice packs were frozen solid, because I had read that if your ice packs are slightly liquified in any way, the TSA will confiscate them.  Sure enough, I heard TSA agents both times mumble "frozen" to themselves as they confirmed that the ice packs were nice and frozen. Printed this card: TSA Card This card ale...

This past weekend, Evie took her first plane ride and her first vacation!  Our friends Jerry and Rebecca were getting married in Vegas.  I was nervous about her first flight, and spent a few days just making sure we had everything we needed. Just packing for a baby is hard enough.  Make that an aspirating baby on a g-tube who is starting solids, and it gets even more interesting.  But I am thankful that it's not an aspirating baby on a g-tube on oxygen!! Evie snoozed before take-off! We made it to the airport just in time to get through security, grab something for dinner for the trip, and pre-board.   Evie got her first pair of airplane wings, but was too sleepy to enjoy them.  Evie became known as "the good baby" on the plane, because there was another baby who was screaming the whole flight.  Poor baby and her poor mommy.   One fear was that Evie had not pooped in 2 days, and she usually poops at least once a day...

Evie hates tummy time. Her low muscle tone that comes with Down Syndrome makes it a little harder for her to coordinate pushing herself up. She's getting better at it by the day, but it's still not her favorite to be on her tummy.  She yells at the rug until I pick her up. She also does not like to sit still anymore. This can be a problem when she is getting her food through g-tube, and needs to sit for a little more than an hour. Enter my friend Paul Lee's awesome designer baby products, under the brand name Giantsuper . I'm not just telling you about these because he's a friend from way back when, but because Evie actually really likes them.  The first product we bought was the Peekaboo Pop-up Zoo. These beautifully designed cards have animals on the front and thoughtful questions to talk about with your child on the back. The best part is that you use your finger to pop up the animal, and then you get to see your baby's face light up. Enjoying ...