19 days old!

Maddie is 19 days old today.  Seems like such a blur already. I have completely lost my ability to distinguish between different days of the week and only know what time it is because of who is walking through the bay or because its time to pump (again).

We have so much to be thankful for.

• We didn't know if Maddie would be able to hear or see - the video from the other day shows that she can do both.  
• We didn't know how being intubated would effect her - often CDH kids (or any kid who is intubated for the first weeks of life) have a oral aversion and forget how to suck and swallow.  I'm happy to report that Maddie loves her binky.  But she loves sucking on my pinkie finger even more. 
• When we first got discharged, our average daily cost of living was about $200/day.  Between help from friends, family and the hospital's generosity, we are now managing to live on about $35/day total.  This does not include Maddie's deluxe suite, of course.  We estimate that she is costing between $15K and $20K a day - thank God for good insurance!
• Maddie is making steady upwards progress every day.  She is still dependent on a lot of help to get through the day, but hasn't had emergency life saving intervention in about 5 days.  
• Dillan is such a great kid and has been so amazing through all of this.  So far his spirits are high and he is still a happy well adjusted kid.  I hope we never discover what his breaking point will actually be.
• Friends coming to visit Maddie, taking care of Dakota, playdates with Dillan, calls, texts, emails, presents, gift certificates, donations, giving blood and mostly, prayers.
• Family dropping everything and flying or driving for hours to be here to support us.  Ruth has been living with Dillan for over 3 weeks now and still has energy left over to help clean up my house and yard.  Mom and Dad, Uncle John and Aunt Carol have made multiple trips up to see both kids.  Rusty left his new baby and Therese in Utah (man, I hate Utah) to come see us.  Jamie has dropped everything to be here almost every day.  Plus all of Luke's family that has been able to stop in for an afternoon and spend some time with us.  
• Prepositions - I know its killing some of you that I keep ending sentences with them.  Sorry.  No editing of my blogs allowed for at least another few months.

Love to you all.  I hope to keep reporting happy news.  Please continue to pray for Maddie.  We see Him working and answering prayers every minute of every day.