Walking the tight wire without a net

The last couple days have continued the crazy ride as it has been “touch n go” over the weekend.  Julia’s ventilator has been changed multiple times trying to keep her blood gases at the right levels.  Her levels can swing pretty dramatically each day.  Sometimes her levels are too low and other times they are too high.  Always a balancing act. 

There is a lot she is dealing with right now with her infection and poor lungs, those being her 2 biggest obstacles.  They started her on a new anti-fungal medicine that is usually used on adults, but they are hoping it will work for her.  Her lungs are at a critical stable state with little to no wiggle room for treatment.  We just got off the phone with our night nurse and she said Julia is saturating well, and her blood gas is good.  So she is able to wean her a little on her vent, but she is still at 100% oxygen.  Her urine output is improving which is very important due to her swelling, so hopefully she will continue that,   Or we might have to put her hands in warm water while she sleeps.    Or maybe we could put a little portable water fall by her bed to entice the urine output.  During pregnancy I can practically pee on command.  Sorry TMI(too much info).  

In all seriousness, this has been a extremely difficult time for us(in all aspects), and we also feel for each of you who are going through this with us.  I guess the hardest part for us right now is the unknown.  If, when, where, what?  And all the complications that go with the if, when’s, what etc.  We believe in miracles, and we feel if God wants her to be made whole, he will make her whole.  But we also accept God’s will that if he wants to take her he will.   Julia is at a point where she isn’t quite making an indication of which way she wants to go, she is just sitting on that fence still.  The doctor is surprised that she hasn’t leaned one way or the other. He says usually a baby in her condition would indicate that to us.  The doctor’s will let us know when we need to say mercy, but they aren’t there yet.  But she is hanging from a very delicate thread.

The last 6 and a half weeks Bill and I have had all of our control taken away.  We’ve had to rely greatly on faith, prayer and inspiration for our decision making.  But yet we still recognize and appreciate all of the blessings and miracles small and great that we have received.  On Sunday I was able to attend church services at Primary Children’s hospital, and the speaker talked about being grateful and recognizing blessings in our trials.  I was truly touched with a congregation full of sick children,  parents of sick children and the doctor’s and nurses who attend them.  There were very few dry eyes in the congregation after the beautiful message. 

A positive attitude and continued faith in our Father’s will, can help us get through any trial(s) even the very difficult and tender ones.  Thank you again for your many prayers, texts, service, love and support.  It means so much to us.  We love you! 

P.S. It’s late, please excuse grammar and scattered thought.