Day +42 November 3

Elle's cultures still coming back negative for yeast, but she is still acting like she is sick, they say because of the blood pressures.  The plan is to take out 2-3 lines tomorrow and replace them.  I said before that I was ready to pounce at this window of opportunity.  Well here it is and the plan is in place but I am not sure she can handle the big Hickman replacement.  This is her largest central IV access and replacing it is a surgery rather than a "procedure".  Her skin is so bad and "cheesy" at her neck and sorry to be graphic, but the outer layer of skin is coming off of her upper chest and shoulders.  I am not sure how to accomplish what needs to be done without completely taking off a very large area of skin, causing bleeding to already open tissue, and/or driving more yeast or Pseudomonas or what ever else is lurking in opportunistic colonies into her bloodstream! 

I know many of you will not read this until after her big day Thursday of IV replacements, but we are asking for extra prayers that the skilled physicians will have clear minds, steady hands, exceptional judgement.  We also ask for protection against further infection, prayers for baby to tolerate the procedures / surgery and to not suffer much pain through it all.  We ask that she and we have the strength and endurance to keep fighting.  Also pray that we can entrust our sweet girl into God's hands and that we can try to be clear headed and worry less by letting Him shoulder the burden.

She is resting after head gear (done in record time this time) she is actually a more normal color than this

We got to see her beautiful face uncovered again tonight while changing her head gear.  Although it her head is very raw, she is still so beautiful and we wish we could smother her face in kisses.  This is not to say it isn't hard on us.  S and I went and had a beer afterward! RT, Sheena stayed an hour and a half over to help us with her head gear.  She is one of the awesome staff here.  So many of the nurses, RTs, and doctors seem to take a personal interest in her.  They are not afraid to care and we love that.  I am going to be a better nurse for it.

Chloe, Destiny, and Ginger are getting on well.  They are having a really good time together.  They are learning to read, and share, and make chores fun.

I mentioned in the last post how I was able to go to sleep on time, right?  Well, I lay in bed awake for 20 minutes or so, unable to fall asleep and Ginger whispers, "Are you awake"?  So we end up quietly talking like teenagers for awhile.  Finally, we both fall asleep and at about 3AM, I hear Chloe cough and then say,"Mama"  I started to get up just as she vomits in her bed.  You never saw two women move so fast!  It was actually her second episode.  Stefan and Dad felt the love too.  He said you never saw two men move so fast! It is just a little stomach bug going around RMH. She feels perfectly fine after throwing up though and it earns her a ticket into bed with me or her dad (we try to keep her in her own bed or we'll never get her out again, but I have to admit that on those occasions when she is in bed with me, I LOVE it).

Ginger took the girls in a wagon to get groceries

This one of destiny looks like a Polaroid from the early 60s



Stefan gets some cool effects on his phone

 

Looks peaceful right?  Threw up an hour later!

So, please keep up the positivity and thank you so very much for supporting and praying and rallying with us for this little dolly!!