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!