It's Official!!

Hey hey hey! Go to doubletape101.blogspot.com to check out my products! Juliana still doesn't have hers out yet, :( but they should be out soon! See you on the other side!!

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!  

Tomorrow!

Hi everyone! 

Tomorrow is the big day, and I am actually excited to say we are doing okay. We were at TCH most of the day today, and many of our questions were answered. We found out some things we didn’t know we didn’t know. For example, Emma Grace is having a valve placement, not a replacement. Who even knew there was such a thing? 

Emma Grace threw up when she looked at all the blood they were taking. She’s not a fan of needles. And needles attached to vials of blood, well that was all it took. Giving blood was one of the first things she did. It was smooth sailing from then until the child life specialist told her about all the tubes and lines that would be coming in and out of her body in various places. I’ve never seen Emma Grace’s eyes widen so much. We assured her of two things. Some would be gone before she even knew they were there, and that is why there is pain medication. 

Tim did the best he could do in his wheelchair. His knee is swollen due to lack of attention today. Tomorrow we will have to be a bit more vigilant. 

Carson hung out with Grandma Doe today and had a ball. Thank God for grandparents. 

Speaking of God, we are resting in some Scripture and His promises. We are breathing through this and taking one step at a time. We are completely out of control in this process, and that’s okay, hard and painful (even gut-wrenching) sometimes, but okay because we know there are bigger things at work. God is reminding us of His goodness and faithfulness.

If you come to visit, (and we do love that we are loved!), please know that we might be in our own little worlds and may not be our usual bubbly selves. Well, I’m not sure either of us would ever describe Tim as bubbly, but you get the idea. Also, we love the texts and emails. I’m not sure we’ll be able to respond to each and every one, although we wish we could. We will update the blog as often as we can, and we have set up a carepage. The link is http://www.carepages.com/carepages/HeartyTimeswithEmmaGrace Check us out there, too. 

We are walking through this as best we can, and we are grateful you all are along with us for the journey.  

Much love, 
Amy

Two Weeks Left

      My surgery is in TWO weeks!! I am so nervous. I'm nervous about recovery I really hope it goes well! All I need to remember is that I'm missing school for a MONTH!!!! OH YEAH!!!With two weeks till surgery I can barely stop thinking about it, the thought sort of creeps up on me like my brother. What I'm going to miss the most is science with Mrs.Miller, writing with Mrs.Lewis, and most of all my friends. I'm going to miss Jaqulyn,Sara,and everyone. That is all for now, I'll keep you updated!

                       Pray For Me Please!!

Mom's Thoughts

Emma Grace is away at camp. Strangers and friends have asked me how we’re doing, what we think about all of this. Here are my thoughts...


I’m hoping Jesus comes back within the next few weeks. I mean, I really want to grow old with my husband and watch my children get married and all that, but I don’t want to face this ugly but necessary thing coming up in a couple of weeks.

I’m not worried about the actual surgery. Emma Grace’s heart surgeon assures us valve replacements are heart surgery 101. The hospital stay doesn’t concern me much. Texas Children’s consistently ranks in the top ten as far as hospitals for children go. Their heart center ranks even higher. They must be doing something right.

Missing school? Eh, a pain but manageable. The logistics of it all? That’s where friends and family step in. Overall, figuring out what it’s going to look like won’t be easy, but I’m okay with all of that. What I’m struggling with is larger.

How do I know Emma Grace is going to be okay?

When it’s all said and done, I don’t. That’s what is so scary. Brennan Manning, who is controversial I know but I can’t figure out why, says the absolute hardest thing for a Christian to do is to trust. Oh, I can have faith. I can have faith in a loving God until the cows come home, but trust, well that’s another story for me.

A friend once told me in passing between church and Sunday school that her family didn’t have an alarm system because she knew God would take care of them. I was checking my kids into their classes and simultaneously thinking this was the most naive statement I had ever heard. Does she not watch the news? People who believe in God get burgled, or worse, all the time. Bad things happen to those who have faith. Good people get robbed. I looked up to tell her my thoughts, and she was gone. The statement has resonated with me since then.

God will take care of them. Hmmm..... Perhaps my friend knew a deeper truth? If they were burgled, would it be pleasant? No. Would it be horrible? Yes. Would it be something she would carry with her forever in her soul? Perhaps. Could she be forgiving? I don’t know.

She knew that God, the god she chose to worship, follow and obey, has promised her nothing but good at the end.

The end. Of her life. No more. Only good. She knew that He will ultimately take care of her.

What a soul-wrenching, change-my-life truth. Life is yucky here. Good people get robbed. Heart problems exist.

The list goes on. The messiness surrounds us, but our God, my heavenly father, has promised to take care of us.

So when Emma Grace is wheeled away from me, I’ll be pulling on all my moxie and courage to trust God, the great physician, the great I AM to take care of her. And I know He will. In the end.

And that is what is going to get me through surgery.

A little more history

This was me when I came home from Texas Children's. I still had the feeding tube in. My parents did not like the feeding tube because each time they had to feed me, they had to listen through a stethoscope to make sure it was in the right place. What a pain! 

We all got used to the feeding tube after a while. 

My parents say I was a happy baby! 

See my red cheeks? This was from being in the hospital. My skin was reacting to all the tape. 

My cheeks are healing! 

This was right before I got sick with bacterial meningitis. I can tell I don't look so good. 

Double ugh. I went back to the hospital with bacterial meningitis at 14-months-old. I was there over Halloween, so I dressed up at the hospital. I dressed up as a cardiologist. 

I really don't look like I feel well, do I? This was at the beginning, before the antibiotics kicked in. 

My mom says this was the hardest hospital stay because the antibiotics kicked in quickly, but we had to stay there for the entire course. Two weeks! I was well and still at the hospital! 

Going home again! 

This is me at physical therapy. The doctor said I should go there because I was slow at learning how to walk. 

Mom loves this picture! 

Happy baby! 

This is me after my open-heart surgery. We are home, but I'm still recovering. The surgery was on May 6, 2003. I was one-year-old. I don't look too pretty, do I? Granddad says I look like I was in a car wreck. My parents say the open-heart surgery was pretty uneventful. The surgery was about 6 hours and considered a success. They weren't sure what they were going to do until they opened me up (they never really are), but out of all the options they thought were available, the best possible outcome was achieved. It was a good surgery. Surprisingly, I'm not on any medication and have no restrictions, even to this day.

Still recovering. My cheeks are looking better, aren't they?

With my friends, Nash and Cade. I'm recovering but my cheeks are still red, red, red! The scar looks much better, too. 

My mom says this picture encompasses my personality beautifully at this age! 

A Little History

Today I'm going to give you a little history. I was born on Sunday, August 5, 2001. My parents were so excited! I was healthy for about 4 hours. Then the nurses noticed I was cold. They put me under a warming lamp.

This is me with my dad, my grandmother Nan, Uncle Darrell, and Auntie Joy. Everyone was so excited. No one had any idea how sick I was. 

It was a normal pregnancy, with no indication that anything was wrong. 

A little while after I was born, the nurse came in to say they were moving me under the warming lamp because I was cold. My parents weren't too concerned. My mom's main concern was that they not feed me with a bottle because she was breastfeeding. That's what it said in all of her books, to make sure the nurses don't feed your baby with a bottle! That really should have been the least of their worries! Then they came in and said they could not warm me up. My parents were a little more worried at this point. 

A new doctor came in at 11 p.m. and said they had to take me to Texas Children's Hospital. My parents were very sad and scared at this point. My mom remembers all these people coming in from TCH with forms to fill out and sign. They were very nice. My parents were overwhelmed. Mom had to stay at the hospital because she had just given birth, and Dad followed the Kangaroo Crew to TCH. Nobody was sure of what was wrong with me, just that I was slowly dying. 

From the NICU (Neonatal Intensive Care Unit). It took about 30 minutes to get me into my mom's lap, with all the cords and wires and machines. My mom said you would think it would be a loud room with all those babies crying, but it's actually very quiet because none of them can cry out because they have tubes down their throats. 

At this point, they had figured out it was my heart. It was all the same to my parents, because they still had no idea what was going on. 

Can you see me?

This is in the Cardiovascular Intensive Care Unit, or CVICU. I had a BT shunt put in through my back. That's why there's a scar on my back. My mom's friend, Amy Curry, brought her books to read to me. Mom also talked to me a lot. She said she felt kinda silly reading and talking to me because I wasn't moving much and only occasionally opening my eyes, but she did it anyway. She figured it couldn't hurt. 

They explained to my parents what was wrong with me. I was born with a congenital heart defect called pulmonary atresia. It actually has a longer name than that but we can never remember it all. My mom told them she was not good in science and knew where the heart was, but that was about it. They told her I was born with three chambers instead of four because I have a bad valve. That's the valve I'm going to have replaced in August. I also have another bad valve, but they're not sure what they are going to do with that valve yet. They watch me very closely. 

This is on the recovery floor. We were on our way to being released from the hospital but got a little sidetracked. 

The first night we were on the recovery floor after leaving CVICU, I was having a hard time breathing. Grandma Doe was there to help my mom because my dad had to go to work the next day. We had been in the hospital for about 3 weeks. My mom called the doctor, a resident, several times throughout the night because I was struggling so hard to breathe. The doctor ordered breathing treatments. They didn't help. None of us slept much. My mom remembers thinking that no one should have to work this hard to breathe. 

The doctor called for an X-ray. It was early in the morning. We were tired! Mom wanted to take me and let Grandma Doe sleep. I was in Mom's lap in the wheelchair while she was being pushed by an X-ray tech. On the way, Mom said she was happy because I had finally calmed down. The medicine was working! I looked so peaceful, she said. In the elevator, though, she realized why I looked so peaceful. I wasn't breathing. Later they decided I had experienced a heart attack. She started screaming. The tech didn't know what to do. The doors opened, and my mom was screaming, "My baby's not breathing! My baby's not breathing!" A nurse took me from her arms and whisked me to the ER. My mom was quickly wheeled down and prayed outside the room where I was.  None of the doctors or nurses knew anything about me. They were yelling questions to my mom, and my mom was answering them as best she could. A chaplain was called. My dad rushed to the hospital. They put us in a private room to say goodbye to me. 

Luckily, they didn't have to do that! I lived! They ran all these tests to see if there would be any long term consequences. Everything came back okay. They also told my mom and dad they would have to wait and see how I developed. So far, so good! 

We went back to the recovery floor after a few more days in CVICU for observation. My mom said if that doctor came into the room, she wasn't sure what she would have done. She was still angry she had let me get that bad. She still says to this day it doesn't take a medical degree to see when a baby can't breathe. 

I became known as "The Elevator Baby" at Texas Children's Hospital after my ordeal.  

I look kind of creepy with the IV in my head. They had to do that because they had used all my other veins. Check out those cheeks, though! I'm cute! 

Chilling on the recovery floor.

Grandma Doe came to the hospital quite a bit. Lots of other people came, too, to see me and pray over me. 

My favorite nurse, Paula Garroutte. She helped Mom and Dad when I came home. 

The tube is in my nose to feed me. They thought the heart attack was caused by aspirating, which is a fancy way of saying I choked. They weren't sure if I could swallow. The tube went in to avoid any other aspirations. I went to physical therapy to learn how to eat. Turns out, I didn't have a problem with it! I pulled it out a month after we got home and was fine. 

Finally, leaving the hospital to go home! Mom said she was scared to death to take me home. 

YAY! Home! 

Big News!!!

Today something huge happened I lost a molar!! I am going to have another visit from the Tooth Fairy!! I wonder how much money I will get??

My MRI Today

Today I have a MRI! You know I have mentioned I HATE MRIs! This year I don't have to get sadated,but I still have to get an IV. My mom might put photos on. I will watch a movie in a tube were they take pictures of my heart. I hope they have Harry Potter and the prisoner of azkaban!!!!

Great Day Houston!

On Monday I will be on tv to talk about my heart. Be sure to watch me and my mom on Monday morning at 9 on channel 11. My doctor Dr. Rivenes will be on there too with me. I don't know if I'm going to talk. I have no idea what I will say if they ask me something. I guess we'll wait and see! I don't remember anything about my surgeries, which is good because I don't have to remember the pain! I do have to have another MRI in April. I hate MRI! I absolutely positively hate Mris! Why do I have to get the shot? TV will be fun! Now goodbye! See you after the show!

CAMP MYSTIC

I loved camp this summer! I was in the tribe of the KIOWA (ke-o-wa).I had a lot of fun going horse back riding, swimming, drawing,golfing,drama,free swim, cheer leading,guitar,minnows.I didn't want to leave.I know next year I will have a lot of fun!

Getting ready for more camp!

Nothing big on my heart right now. That's good news! Yay! No surgery for a while, like a few more years or so. I hope I don't have to do any of those yucky tests again anytime soon. I'm getting ready to go to camp for FOUR weeks, but I'm not worried about my heart. I know it will be absolutely, positively fine. My mommy wants me to write longer blog posts, but I don't have time right now. See you after camp!

P.S. There are sugar ants crawling in our house, and we don't know why!

Camp Pump It Up

I went to Camp Pump it Up a few weeks ago. It's a camp for kids with heart problems. I met a friend there named Ainsley who has a seven-year-old boy's heart in her. She's also had cancer. I rode horses and canoed. It was fun. I had lots of fun activities. It was good being there with kids who have problems like me. Mine weren't nearly as bad! I can't wait to go next year! It's for a weekend. I didn't know anyone when I went. I was shy. Carson can go with me one day. The dance was fun. I only saw one girl dance with a boy. I was in cabin #9. It was the best cabin I think. I was too busy to miss my family. See ya later!

Today I had my stress test. They put sticky things on my chest to put cords on them. I have no idea what they do. Something about measuring my heart. I walked on a treadmill for 10 minutes. At the end, I had to run. I got tired and I started to cry. I feel fine now but I'm a little tired. Mommy took a bunch of pictures. Here they are.

Before it happened. I'm watching the TV.

I felt like crying!





I couldn't breathe!

This one is right when I was done. See how tired I am?

I'm about to get all the sticky things off of my chest.

Bye for now!