Today has felt like we're getting into somewhat of a routine. I knock on wood having said that, because I know that we could have everything change without warning, but it was the fourth day in a row without any major drama, with Clara doing well on ECMO, and us playing the waiting game to see when she'll be ready for her surgery, so we were able to get into more of a groove than we have been. Chrissy and I moved back into our own house, and I went back to work. Since we didn't spend the whole day together, this post will have a little more "me" than "we."
I started out today's work day with a side trip to Brenner to see Clara at around 9am. I planned to just pop in and talk to her some and then leave, but before I knew it, it was after 10. It's amazing how quickly time passes when I'm at her side; it feels like I can blink and I've been there for hours. I guess that time flies when you're having fun, but it launches into orbit when you're completely, hopelessly smitten.
I reluctantly tore myself away and went out to call on some nursing facilities and make a few deliveries (Note: for anyone who doesn't know, I am a representative for a company that provides splints/braces and other medical goods for nursing home residents). It was really good for my psychology to get out and get some work done, partly to provide a distraction, and partly because I work on 100% commission, and we have some pretty significant medical bills pending. But it was also good because I have found myself supported, loved on, and prayed for by my clients that I call on. To have people cross the boundary from customer to friend, to have them drop professional pleasantries and give you a big bear hug and tell you that you're in their prayers, that's powerful. And it fills reservoirs that have been emptying. And it reminds me of the ever-repeating miracle that we can step outside ourselves to connect with and care for others.
After work, I went back to the PICU to soak up just a little more time with Clara. This seems as good a place as any to brag on the staff at Brenner Children's Hospital. Every single nurse, doctor, respiratory therapist, receptionist, and whatever other titles we've come into contact with there has been patient, helpful, and compassionate in a way that you don't often see. If any of you happen to be reading this, we can never thank you enough for all that you do to take care of our little girl and facilitate her healing. You also deserve a lot of credit for caring for her parents and grandparents, whom you have helped immensely. I can't imagine Clara being in better hands, short of those of the Creator himself.
Chrissy urged me not to let myself stay for more than 45 minutes this time; after all, meals and sleep have to happen at some point, and those take time too. I stayed every second of that 45 minutes though, holding her hand, touching her toes, kissing her head, and talking to her and telling her how much her mother and I love her. My favorite thing to tell her has become "Clara, I want you to have a good day. Because when you have a good day, I have a good day." And I finally got to see her open her eyes juuuust a crack and look around, before she fell back asleep. That half-second sent me soaring.
I returned home (again, reluctant to leave Clara's side) to a wonderful meal cooked by my mother, who has selflessly given up her Spring Break to be our live-in nurse, chauffeur, maid, butler, and chef. And now, my eyelids are starting to droop a bit, so I'm heading bed-ways momentarily.
But first, the medical updates for the day:
-Another blessed boring day for the most part, with Clara resting and getting some fluid off.
-An ECG (Echocardiogram) was done to try and gauge the pressures in her lungs, but unfortunately didn't show us very much.
-We've been told that the pediatric surgeons are looking tentatively at Thursday to perform the surgery to repair her diaphragm, but that is not set in stone and could change with her condition at any point.
Like I said, pretty boring, stable day, so there's not much to report. We're glad of that.
-Pray that her pulmonary pressures would drop significantly. They're less of an immediate issue at the moment, because the ECMO machine is doing the work for her, but the less time on ECMO, the less chance of ECMO-related complications, and the sooner she's able to pump blood through those pulmonary blood vessels, the sooner she'll be able to go without ECMO.
-Pray for her to be able to get rid of her fluid build-up; she's on Lasix to help get rid of some of it, but we'd like to get rid of a lot more before she goes into surgery.
-Pray for the doctors and surgeons that will be making very serious decisions about Clara's care in the coming days and weeks.
-Pray for the day when she can come home to us. We prayed tonight for God to bless her entire life and to let her grow up and be an incredible testament to his love for decades to come.
-Don't forget to follow @PrayForClara on Twitter. This will be one of the ways that we can update during the day without having to sit down at a computer and bang out a full blog post. Even if you aren't signed up for Twitter, you can easily check it for updates by going to http://twitter.com/PrayForClara.
-A lot of people have been asking what they can do to help us out. We haven't actually had time to think a whole lot about it. We'll get back to you. Right now the #1 thing is to pray for Clara and for us.
It's midnight. I'm about to pass out on the keyboard. I love you all; thank you for caring for us, and thank you especially for loving our little Clara.
PS - Oh shoot. I forgot that I had this whole thing I wanted to say about the etymology of the phrase "Getting into a groove." I'm crazy about analogies, and the phrase is derived from working a saw. The saw tends to jump around a bit until you can make a groove and get the saw down into it. Once "in the groove," you can focus on the action at hand and your work gets much more efficient. A lot of people hear that phrase and take it to mean that you're getting into a routine, and can just coast, but when you're sawing, you've got a specific goal in mind: turn one big thing into two smaller things. We've got a specific goal in mind too: bring our girl home. And our routine is getting a little more efficient, so that we can put our energy into getting that goal accomplished. But sawing can't be forced. Anyone who has ever used a hand saw can tell you that you have to let the weight of the saw do the work. We know that we've got to let go and let another Force do the work here too.
That whole digression probably would have gotten me a B- at best in one of my classes in Park Hall at UGA's English department, but I thought of it and liked it. Cut me a break, it's late.
Ok, goodnight for real. Love and Peace.