Wednesday, September 29, 2010

A daily update and life from afar

I don't know that I have the words to write about what it means to me to be here teaching again and not at my family's side, but I can share a bit of how Aurelia is doing and some impressions I've had during this first day away.

Aurelia has had some changes to her fluid intake and her electrolyte levels as they work to keep her hydrated during this time on her diuretic. She's also off the bili lights and she did have a nice time today with her mother, being held for a good fifteen minutes!

The amount of fluid being pumped from her lungs continues to decrease each day and the general surgery people were pleased with what they saw this morning during their consult. She's still on pace for heart surgery on Monday and they will do a echo sometime on Thursday or Friday to determine the procedure for her heart surgery.

Rounds this morning went well and the doctor's scheduled her for no new tests. She's off her breathing tube and while her breathing remains labored they are no longer issuing daily x-rays for her chest until there is some sign of a drop in her oxygen levels.

The urology and kidney doctors are pleased with where she is with her kidney and how she is avoiding infection, and the ophthalmologists have said that her eyes appear to be fully normal. We'll have to wait a full two months or so for the genetic screening to be completed, so until then we won't know what's possibly behind all these many troubles.

Other than that, she is looking good. Dr. Naim and Dr. Ince are just awesome and I love all the nurses that Aurelia has had during her stay. They are amazing, and having one nurse per baby is such a godsend. We can call in directly at any time and get updated (which I am thrilled about) and everyone there has been very supportive, including our social worker, Caroline, and the folks working with the COPE program (the parents study that we're a part of).

As for what it feels like to be back at school? Well, I don't rightly know to be honest. Part of me is depressed (and that good sinking heart sad depressed, too), part of me is forlorn, another part angry - at myself and the situation, and parts of me welcome the diversion that is teaching.

When I'm actively teaching I can consciously escape from all these feelings, but when I let the students do any independent practice my mind automatically switches off and those emotions come flooding back. I'm not sure how to describe it yet, but I'm working on the words. It feels a bit like a part of you is alive, but listless, almost comatose. It's not dead or empty, but it is sullen. I don't want to call it a nagging feeling, and it goes beyond persistence, but it feels almost like a hole inside that has been filled with some sort of viscous sludge that has hardened into a pit of loathsome despair.

As I find words for it I will post them, but this is a new emotion to me, different than depression or its cousins, so I want to try and wrap my mind around exactly how it is impacting my behavior.

And other good news, before I close. Jillian's mother broke down and took her to the hospital today. A major victory! Also, we were just relocated to the Ronald McDonald House five or so blocks from the hospital. This is a major victory as well!


  1. Sending you a big hug, Charley. It's completely normal and to be expected that you are on a roller coaster of emotions. And, I remember lots of days when I was just numb to really feeling anything in the present. Sometimes it's all you can do to just focus on keeping your head down and moving forward. Just try to keep checking in with yourself...

    I am really glad to hear that things are still stable for Aurelia -- that's huge. I'm sure, as you know, these things can change quickly, and it seems like a great sign that she appears so strong and is such a fighter. I'm also really happy that Jillian's mom was able to drive them to the hospital and that the Ronald McDonald house came through. What a relief that will be for all of you!

    Anyway, keep writing, and know you have lots of people who are reading along and supporting you. It's clear you have so many people who are sending lots of love and prayers to the four of you.

  2. TGIF! I know one teacher who is going to be more eager than any of the students for that final bell to ring today. Thanks for sharing your feelings. You and Jillian are a great team and your daughters are very lucky to have you. I am just a phone call away if you need anything.

  3. Hi Jill and Charley, we are going out of town for a few days, but we wanted to let you know that we will be thinking of you and Aurelia and Madison. We will keep in touch with Mom and Dad so we will know how Aurelia is doing. Our prayers continue. We send you our positive thoughts and love. Ilene and Gary in New Milford