Many steps back....

Clara Elyse Murphy, Day of Life 22

It has been a while since I have sat down to blog. A lot has happen in just a week. It seems that everyday we keep taking steps back. Jason and I literally are scared to walk in Clara's POD in the morning, fearful of something new we may learn discouraging.

On September 26th, we learned that Clara had an infection in her blood. It was to be treat with an antibiotic A blood culture later came back negative, so we were hoping it was clearing up.

Yesterday we learned that there was another culture that came back positive so they believe it has now spread through out her body. They began yesterday using two antibiotics again in hopes to clear it up. Also Clara is losing good veins to stick for an IV line, so they will have to start a PICC line despite being infected. Getting off the vent is off the table for the time being.

Despite all of this Clara is doing remarkably well. She is alert, moves around, opens her eyes, tolerates her feeds and still continues to get feisty when the nurses mess with her (which is all the time). This is encouraging. Her nurse practitioner said today that she should be a really sick baby, but in Clara's fashion "doesn't know she is sick". They have also said at any time she could start getting sick, just to prepare us.

TODAY: I was encouraged to walk in this morning to hear that she was still looked well. She was very alert and was just a kicking her legs and arms. That is when I took the above photos. They are waiting for a culture, which will come tomorrow morning? We PRAY it is negative again. That means the antibiotic is working. However if is positive for infection, they will begin to test her organs to see if they have been infected.  Which I assume will not be encouraging.
A PICC line was to go in this evening, and she also got another blood transfusion today, her 5th.

Jason and I are literally at a loss for words. Confused and beyond scared, trying to be strong and press on. But as you can imagine it is hard to do so. Even though I know she has no idea what's going on and prob isn't experiencing pain, it is so hard to see her go through this. We would rather it be us instead.  But it's not.

Madeline has been our joy, constant normal, and a distraction. I told Jason last night what would we do without her, I couldn't imagine going home everyday from the hospital to just our worry. I long for the time we can just all be together as a family with both our girls. 

I hope to get a call tonight with an update on the PICC and some more stuff. Please pray specifically that Clara gets a negative for infection tomorrow and that she can ride this out. 

It is my hope for better news to share tomorrow. I praise GOD constantly that she is still fighting and is proving to be remarkable, just as I have always known she is.