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A day in the new life of Evie

Some friends have asked what a day looks like in the life of Evie. Post-heart-surgery, she is stronger, and without Ollie the oxygen tank, we are so much freer! 

Evie starts the morning in her play gym, working on her grabbing skills.  Then we do some tummy time, which she still doesn't like so much.  Because of reflux, Evie can't always lie flat on her back, so the morning is the best time before she has a bottle.

We usually have an appointment once a week for various follow ups. Today we went to Boston Childrens for her Endocrinology follow up.  We woke up earlier than usual and headed to the hospital.  It was wonderful to have my brother along to help us.  Lifting the car seat out of the middle of an SUV is killer to my back!

Daddy usually gets all of her medications ready in the morning and gives them to her through her g-tube while she's just waking up in her bed.  Then Mommy packs up the bottle and g-tube bag inside Pepe the Penguin backpack, changes her diaper, and cleans up Evie's g-tube area.  

This time, we got to the hospital early enough for a Starbucks stop.  Of course that was apparently the best time for pooping as well, because I heard and smelled something as Evie and I waited for my brother in the waiting area.  As I lifted her up, I realized the extent of what had occurred.  An "ohhhh no, baby" escaped my lips as I felt the wetness of her back and then saw the brown stain spread up her back all the way up to her shoulder.  The people around me also saw, I'm sure.  This is the very reason why I now pack a baby towel in the stroller. I wrapped her in the towel and zipped over to the restroom in the lobby of Beth Israel, only to find that there was no changing table there! (I never noticed how important these were until we needed them too!)

So we marched back down Longwood Ave with Dave pushing the stroller and me holding a poop-drenched Evie in my arms as we got to 333 Longwood.  The info desk lady politely asked if I would like to use the check in kiosk, and I politely replied no, because I had a poop blowout emergency. She quickly waved us to the elevator. 

We made it to the changing table and I could finally assess the disaster at hand. I will spare you the details.  Here is Evie wearing the emergency emergency outfit because I got the first one dirty in all the cleaning.  I usually have 4 outfits in her bag, and went through 3!

I had to fill out a lot of paperwork for Evie to apply for disability (a whole new world I am learning about!), so that was our next stop to drop it off. 

Good news--the brand new cafeteria at Boston Childrens is open!  We got to test it out. There is a Starbucks, Subway, and Regina Pizzeria.  There is also a place to order a custom salad, and they have featured dishes by a chef.  All the administrators are still out on the cafeteria floor directing people and testing things out.  One told me about the fancy farro salad and the rotisserie chicken available. Another one directed me to the salmon burgers, bison burgers, and sliders.  They weren't as expensive as I thought they would be either.  Score for Childrens!  It's great to have somewhere else to eat other than Au Bon Pain!

This is us sitting in the corner near the bathroom at the cafeteria.  Luckily Evie pooped again at a more convenient setting. She was going to have to wear long sleeves on a hot day if she had another blowout, but she spared mommy this time around. Evie finished her g-tubing in the cafeteria as we finished our yummy lunches.

Evie and Uncle Dave enjoyed the interactive sensor screen in the lobby at Childrens before we left. 

We got home, and Evie drank half of her meal from the bottle!   G-tubing went a lot faster that way!  Then playtime with Uncle Dave!
Evie is back on sweet potato, after not liking butternut squash as much.  Evie kept asking for more sweet potato by opening her mouth really wide and squinting her eyes. So cute.

When Daddy came home, he showed Evie all his hats, and then put Evie's hat on her head.  She seemed to think that was a blast.

Evie took a nap while everyone else ate dinner. We had Popeye's fried chicken in honor of National Fried Chicken Day.

Evie G-tubed some more dinner, had some more sweet potato, took her medicine, and went to bed.  All in all, a good day in the life of Evie. Mommy was happy because Evie had a good bottle-drinking day again!  Hopefully this is a trend!


  1. Totally love your updates. And Evie is such a cutey.


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