Monday, October 7, 2013 Update

  Today when I arrived at the hospital Lenah's color still seems to be improving.  Her tummy still looks quite swollen, but not more than previously.  Her x-rays still show NO sign of perforation or obstruction.  Her heart rate, blood pressure and oxygenation are all still good.  They had reduced the flow rate on her ventilator yesterday, but had to increase it overnight. Her electrolytes are still in range.  Her red blood cell count is still okay.

 We had lovely visitors today. They were the pastors of our dear friends church. We had a nice visit and wonderful time of prayer. I have felt very encouraged since their visit.

  The cardiologist on rounds today came by to talk to me about the DNR order we had decided on last Tuesday and also about the biliary atresia question.  I explained to her that as things stand at this moment, if Lenah were to crash and the doctors on hand felt that it was because of something transient and recoverable from, we would would support their decision to resuscitate.  But if they didn't think there was a good chance of recovery, we don't want them to subject her to chest compressions and electric shock just to prove that all that could possibly be done for her was done.  I explained to her that we want the best possible outcome for Lenah, but not for our benefit.  We do not want her to suffer needlessly just so we can keep her here a little longer.  I also do not want to prevent any doctor from resuscitating her if they feel strongly that they should.   So she has kind of conditional DNR orders in her file.  I am so thankful that our doctors have taken the time to really listen to us and understand our feelings and position relating to our daughter's care.  I really don't know how they face having to have these hard discussions with parents on a daily basis.  I am thankful that our doctors have been both competent and compassionate.

 A couple of the GI doctors came by to talk to me today and they are far less sure of Lenah's possible biliary atresia.  The continual drop in bilirubin numbers, the fact that her stool has not turned pale, and her liver enzyme numbers are making them scratch their heads.  So right now they are content to wait and see how Lenah responds to the treatment of the NEC (necrotizing enterocolitis).  THIS IS HUGE.  It is now looking far less likely that Lenah has biliary atresia.  With Lenah's heart condition, the BA could be a death sentence.  Really, her heart condition alone is considered by many to be a death sentence.  But we know the Giver of life, and as of this moment He is not done granting life to her.  His praise will continue to be on my lips.

  Each day is a gift.  Hug your babies tight tonight, folks. (Even the big ones)  Just because it doesn't seem as though you are having to fight for their very lives, I realize that really you are.  We are waging a battle not against flesh and blood, but against principalities and powers that seek to steal, kill, and destroy.  Just because your children are not struggling to breathe or fighting infection, you are no less in a battle whether you realize it or not.  If you have been praying for Lenah fervently, you need to pray for your own babies just as fervently.  And know that the Lord is revealing this to me as I am to you.  As much as I have been praying for Lenah....I must do the same for my other children.  The war is just more physical and more apparent in her case.  The war is far more spiritual and hidden in theirs, but NO LESS REAL.