Double Tape 101

Hey Hey Hey! Just letting my FAB FOLLOWERS know that me and my BFF Juliana are starting a business called Double Tape 101! We are going to sell duct tape items for every occasion! Go to our blog www.doubletape101.blogspot.com to check it out! Sadly we don't have any items out yet, but don't worry we will have some up soon! Later peeps!

Anniversary

Hi out there I am sooooo happy! It is my 1 year anniversary month! It has been one full year since my surgery! It was great we even had a school social that night! Sorry I didn't actually post it on my actual anniversary. I have been busy. Check back soon for a new post!

IDAHO

                 I went to Idaho a week or so ago I can't remember. It was a lot of fun! I spent a lot of time outside more then I do here in Texas it is to hot here to play outside! We went with my family,grandparents,and my aunt and uncle with their kids. I LOVE my cousins. They love me to maybe a little to much. Sutton my 3 year old cousin expresses his love by hitting, kicking, and pinching me. Part of the problem was that I volunteered to sit with him on the way back home on the plane. He pinched me so many times it actually began to hurt! Carys is SUPER cute but she would not let me hold her whenever i tried to she would cry run down the hall yelling for her mommy. We rented a boat and went tubbing. Sadly it rained for a long time so we could not play outside for awhile. My mom bruised her tailbone on a horse ride. They gave her a very feisty horse and he loped to the front loping on the side of the mountain. It was very scary to watch! I had a great time other then all of the things I mentioned! Next week I will be at camp! TTYL!

HOME!

Hi everyone! We are home and so happy to be here. Emma Grace still has a lingering low grade fever. I called the cardiology crew at TCH today, and the nurse said it's because she's not up and about enough. Her lungs may be collapsing. I told her it's because they told her not to be up and about! She acknowledged it's a fine line. So, Emma  Grace is not in bed and watching TV all day, much to her chagrin. We go to her pediatrician tomorrow for a routine checkup after heart surgery. We have a few more appointments at TCH to follow-up in the next few weeks. Those people who have seen her say she looks great - it's hard to believe heart surgery was a week ago! Tutoring with Mrs. Johnson begins this Saturday, and Ms. Ramirez has been babysitting some. We are grateful to be over the hump.

I'm still battling a stomach bug but am getting better day by day. This is all a process, but we are getting there! Thank you for all the texts and emails and phone calls and dinners and balloons (the list goes on). The nurses and doctors that came into Emma Grace's room all commented on all her cute gifts, especially the prayer chain from school. Tim and I have a loved daughter and could not be more thankful!

I'm too tired to write anything that requires any thought! Emma Grace is SO good. We are in a recovery room. She's still in a little pain and slightly uncomfortable, but that's normal at this point. Her sassy and brave attitude are returning. We love it. They came and gave us discharge instructions just in case we get discharged over the weekend. Can you imagine if we get to go home on Sunday? That would be wild. She still has a road ahead of her. She can't carry anything over 5 pounds for 6 weeks and no backpack for 12 weeks. She's still tired but she's getting some rest. She doesn't have much of an appetite but that's returning. She'll be back to normal soon!

I took my time getting ready this morning at the Ronald McDonald House. Funny, I know with a sick daughter ten floors up, one would think I would hurry, but I needed some normalcy. I needed to feel human. Typically I poo-poo the grooming process, thinking it a waste of time and almost scorning the very worldliness of it. I mean, if God looks at the heart, why should I care what I look like on the outside?

That discussion aside --  today I’m thinking about the routine of it all. The familiarity. I know how long and how to specifically hold my hair, head and blow dryer to get the exact curl I want. There’s a comfort to it. A knowing. 

And then I think of Emma Grace. She is at the opposite end of the spectrum right now. There is little comfort for her. A group of grown men came in last evening to look at her, study her. They kept their distance, but here’s my daughter, naked but for a thin sheet, one arm strapped down to keep her from pulling out the line coming out of her neck, steri strips covering where the surgeon cut her open, tubes going every which way. No, no routine there. 

And much to her dismay, she’s watching Sponge Bob, which she refuses to watch at home because some friends told her it makes children stupid. She just doesn’t feel up to asking the nurse to change the channel. 

I forgot to pack my deodorant. I’m fairly certain I don’t smell, and I did shower this morning. But because I forgot one thing out of my routine, I feel off. Not off as in horrible, but off as in just this side of not right. Then of course I think of Emma Grace. How off she must feel. Must be my offness multiplied by 1,000. That makes me sad for her.

As I was sitting at Starbucks this morning, watching the train-thingy (I’m not sure of the official name - such a suburbanite.) drop off nurses, doctors and other medical staff, I was struck at how I am simply a cog in the machine. One of the thousands of moms at the medical center today. Moms yearning for healing for their children. Moms wanting comfort. Moms feeling helpless as all they can do for their children is offer ice chips. How out-of-routine. 

But it is in the steps of the doctors, the confidence with which they leave Starbucks, coffee in hand, exit the train-thingy, knowing which way to go -- that pacing, that rhythm, the familiarity the nurse has with Emma Grace’s tubes and beeps and cording that is comforting to me. God has sent them to take care of Emma Grace when her father, her mother, and her friends clearly could not. We are sitting on the sidelines right now. And that is hard. It’s definitely a study in my vulnerability and God’s strength. 

Emma Grace is making small but steady strides. Tubes are slowly being removed by her nurse. An EKG came back normal. Her vitals are good. She’s quite grumpy because she is uncomfortable and wants to go home, she tell us, and I don’t blame her. I do too.This is not our normal, but we need to let her heart get used to its new valve, its new pacing, its new routine. 

Emma Grace is out of surgery! We are so excited. The doctor said it was a rather uneventful surgery. “Boring” is the word he used. We’ll take that. We get to see her within a few hours. What a great day it has been. My daughter has a functioning heart!