Hospital Day 5

I really REALLY thought it was going to start getting easier. And it almost seemed to. Until today.

Because today the chemo is starting to make her sick. She spits up a lot, and she poops- and I know what you are thinking. You're thinking big deal, that's what babies do. Well, picture what you think babies normally do, and multiply that by about a hundred, and you will be touching the tip of today's iceberg.

Kevin's parents brought Bekah up today, and she spent a better part of the afternoon on the computer playing games while we volleyed between rocking Charlotte, walking Charlotte, and feeding Charlotte; who has suddenly become a bottomless pit. When we brought her in, she was eating a solid 30 ounces a day. Now, because of the steroids, she is up to 70 ounces a day. That is more than the recommended eight glasses of water for the average adult.

I am starting to feel incompetent. I have the mom guilt- like I failed to protect her, but there is something more sinister creeping up on me and I don't like the way it is making me feel. Kevin's mom (God bless her, I know she means well and she is lost like we are right now) is starting to take over. It feels like she is directing the show, and her wanting to be here for rounds in the morning is making me a little bit uncomfortable. And then I feel horrible that I even have those thoughts, because I know she is doing the best she can.

She made us food tonight, and I realized this afternoon that Kev and I have only been eating once a day. So I heated up the roast she made, and while we were eating it, Charlie had another sick episode that woke her out of a dead sleep, and the food was forgotten about.

She was so uncomfortable that she started moaning- a low, relentless noise that dug into the core of my soul and ripped my heart out of my chest. I cried to Kevin to make him do something, anything, to get her to stop making that awful noise. What could I do?? Nothing. Tylenol, morphine, she gets it and it just comes back when it starts to wear off.

Now she is finally sleeping, for how long is anyones guess at this point. Its like Kev and I are on autopilot, and it feels like we have been in this hospital for years.

I really hate that I can't sound upbeat about anything right now, but this is a hospital FULL of sick kids. I met Claire tonight, who was sitting on her dads lap watching the fireworks. She has cancer- she has been through surgery, chemo, radiation, and lost one of her kidneys... And the worst part is I look at this little girl and think, could that be us in five years?

Being on autopilot makes it extremely difficult to pick up anything the doctors and nurses are really telling you, which wasn't helpful when Nurse Lisa introduced us to Chester today. Chester is a rightfully named dummy, who has a pic line and a port, and is used to demonstrate the flushing of the lines that we will have to take care of when we are home. I have a feeling we will be getting acquainted with Chester over the next couple of days, as this is something we will have to do with Charlie when we take her home.

So without further ado, I give you Nurse Lisa and Chester, the chest dummy.



And I bid you all good night; and lets cross our fingers that tomorrow dad can still get her to smile, no matter how uncomfortable she is.

And of course, as always, thank you for your prayers and thoughts. The only peace I have right now is the knowledge that so many of you (even people who have only heard of us from friends) are keeping us in mind. We are NEVER too busy to thank each and every one of you.

God bless.

Kristi Rufener