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