Finding the moving average

We are training ourselves (and hopefully all of you) to not focus on Maddie's progress in terms of hours or even a day.  We have learned that in order to ride this roller coaster, we need to look at a block of days together and determine if we are trending positive or negative.  With that in mind, we are definitely trending positive but Maddie had a really rough day yesterday.  She needed a blood transfusion to help stabilize.  We also started her on a diuretic to start helping pull away some of the fluid shes retaining.  Both of these helped immensely and she had a very quiet night.  We were able to bring down the pressure, amps and oxygens levels, all of which she tolerated great for the first time.

Shes a fighter.  As soon as she starts approaching the 2 hour mark between administration of her paralytic, she starts fighting the ventilator and trying to breath as much as she can.   Its always nice to see her spirit start to come through but a relief to see her calm back down and let the machine do the hard work for her.

So far, Rusty, Dad and Luke have all been able to donate blood directly for Maddie.  Once it is screened and matched, their blood will be used first when she needs a transfusion.  Mom donated too but is not a match.  If you come and visit and have A+, A- or O- blood type, please consider donating too.

Today we are hoping she stays nice and quiet.  Maybe lets us wean her down some more.  Repair surgery still looks like for tomorrow afternoon sometime - but again, we'll believe it when it actually happens.  These kinds of things have a way of getting moved around a lot.

Luke and I are really starting to get exhausted.  We both slept like champs last night.  Really missing Dillan - it was heartbreaking to call and say goodnight.  I have two beautiful babies and didn't get to hold either one of them yesterday - not something I ever want to experience again once we bring Maddie home.  Dillan is having a great time with Stan and Ruth and his doggy back at home.  Ruth says he misses us, but I think shes just trying to make me feel better.  He is so in love with his grandma I don't believe he is missing much of anything. 

We have a bed in the NICU for Luke and I again tonight.  Tomorrow we are hoping to get word on something more permanent.

Please continue to pray.  We love all of the emails and texts and calls of encouragement. We super love the gift cards we've received!