Tuesday, December 7, 2010

She Weighs As Much As Her Chart

The words of this week's Attending, Dr. Schatner. Sad, but true. She's been here for all 10 1/2 weeks of her life and papers are added to her chart every day. We're going to need another binder pretty soon! We were told that upon discharge, we will be given a CD with all of her medical records burned on it. Hopefully it will be well-organized!
I am sitting in Aurelia's 6th room in the Cardiac Care Unit watching my little girl sleep peacefully. She loves her little bouncy/vibrating chair and she seems to be snuggled in quite happily. We came back over the to the step-down unit on Sunday and were happy to be reunited with some of our favorite nurses. Nearly every face is familiar now, from patients to parents to the wonderful folks that clean Aurelia's room (thanks Moses and David!). It is odd to see someone who is clearly here for the first time, with a look of bewilderment and uncertainty. All I can do is offer a knowing smile that says, "Don't worry, it gets better. You are one step closer to going home." Of course, for us, being one step closer to home has included a lot of steps back, including 3 return trips to Intensive Care. This most recent trip to the CICU was planned though, a place to recover from her G-tube surgery.
Our little girl is such a trooper. They started her feeds back on Saturday and just today she was advanced to her full feeds. At the moment, she is being continuously fed 23 ml per hour. The goal is to do continuous feeds over night, but to do bollus feeds during the day. This will make life easier for everyone, but our girl has had trouble with bollus feeds in the past, so we'll see how it goes.
I am happy to report that she doesn't seem to be showing signs of discomfort from reflux, so the nissan procedure seems to be doing the job that it was meant to do. She still has lots of mouth secretions (makes her look a bit "foamy" sometimes"), but they are significantly less than before.
Another item of note is that Aurelia's vocal cord paresis certainly seems to be on the mend. She is awake now and strolling the halls with our nurse. I can hear her crying/talking and they are at least 20 feet away. This is a very big deal. I was worried that we wouldn't be able to hear her at all when we finally go home, but that doesn't seem to be the case at all! In fact, I think that she quite likes the sound of her voice and is spending time chanting and talking so that she can hear more of it!
In "other" news, Madison had a bout of a stomach bug for a couple of days at the end of last week and I caught it on Saturday night into Sunday. I stayed in bed for most of the day and finally started to feel somewhat human again by Sunday evening. My mom woke up this morning with it too. When I spoke to Charley earlier today, he was on his way home from school because he too had caught the "ick" and was going home to rest and recover. It seems to be a 24-hour bug, so hopefully we are all on the healing end of it. My dad is the only one in our room who didn't get it, so perhaps it will skip him.
Santa came to visit at the Ronald McDonald House on Saturday. Madison did surprisingly well. She sat on Mama's lap, with Daddy on one side and Santa on the other. She tolerated it for a minute or so and then she was done. After sitting with Santa, children were invited to choose a toy and pick up a goodie bag. After we sat with Santa, Maddie bolted up the steps and out of the room in 5 seconds flat. She skipped the toy station all together! We coaxed her back and she picked out teddy bears for her and Aurelia. While she didn't talk to Santa while we sat with him, we had been asking Maddie what she wanted Santa to bring her and she'd been saying "Choo Choo," so perhaps there will be a train set under our tree this year!
I don't want to use the "D" word (shhhhh... it's "discharge"), but I think that we are getting closer. Aurelia seems to be tolerating her feeds and Charley and I have taken all of the classes that we need to. We both feel that we could use a refresher class in using the feeding pump that we will bring home, but we are mostly comfortable with the other things that we need to do to care for Aurelia. There is still a lot that needs to be done, but we are certainly getting closer. Maybe our next post will have the words "heading home" in the title. I'm not getting my hopes up... okay, I am. But, I'm trying to pretend that I'm not.


  1. Wow, this is great news! I can totally relate to how weird it is to see bewildered "first-timers."
    Just wait till you go back for her Glenn! I remember going in for Bodie's Glenn (the 1st of his 3 surgeries that we were coming in from the "outside" world, so had to go through normal pre-op). We were joking with the nurse on the way up to anesthesia that it was so exciting to get to go to the OR the "normal" way. There was a mom in the elevator with us who had a 6 month old and you could just see the look of utter fear in the poor mom's eyes. We kept trying to reassure it that it would get better, but it's hard to get it until you've been through it!

    So glad to hear her VCP is getting better - it has taken Bodie months (and it's still not quite there) to get sound back, so way to go Aurelia!!!

    Hoping and praying for a discharge soon for you guys!

    Amy & Bodie

  2. Hoping for a discharge post really soon!

  3. I so remember the looks on new parents faces... I just wanted to run up and give them a big hug and say "It's gonna be alright..your child is going to flourish. They are in the best of hands here..how about a cup of coffee?"

    Good luck with the feedings...I remember going from continuous feedings to bolus feedings...This is where I cried alot..It was frustrating for me...so glad when they found out that my daughter had RSV and it wasn't the feedings that were making her throw up, it was the RSV. Thinking of you...and sweet Aurelia.

  4. So hoping for the heading home post.
    The best to your whole family. ~Mary

  5. wow-hoping all continues to go well!
    Sorry to hear you have all been ill too-
    It was also nice to Santa to visit!
    Keeping you in thoughts and prayers!