Haven had a pretty rough day today.  She continues to get more puffy despite her efforts to shed the fluid.  We are working closely with the doctors in order to make certain she is getting the absolute bare minimum amount of fluids (medications, feedings/nutrition, blood, etc.).  We are even working with the head of the ICU on a way to cut back even more fluid by using a different pumping set up for one of her lines.  It is currently not the ICU’s policy to run lines the way we want to do it, but we are aware of other units that successfully do it.  So we are pushing to get an exception made for Haven.  Hopefully we’ll find out tomorrow whether or not they will allow us to try it. 

We had to stop Haven’s feedings all together today.  Apparently, her tissues and organs are so full of extra fluid that her gut is not working properly.  The hope is that once we can get the fluid retention under control, then we can work on getting those feedings up to where we had them last night. 

There is an even bigger concern now that her liver is not functioning properly.  This is critical because major problems can ensue from liver malfunction.  They would like to get a liver biopsy and a brain scan to find out more, but are unable to do that in Haven’s current state of instability. 

The fluid is also causing her body to need more ventilator support we found out this morning.  She is on pretty high ventilator settings right now and will probably remain on them until the extra fluid is gone.  She did have her genetics tests drawn this morning then received the extra blood that she needed.  There is only one lab in the country that process these types of genetics tests, so they were sent off this morning.  They say it takes up to two weeks to obtain results.  In the meantime, the priority is managing fluid in’s and out’s all the while closely monitoring the status of her other vital organs that appear to be on the verge of malfunction. 

We are trying to remain just as strong as ever through all of these new circumstances.  We are so thankful for our daughter and for each other.  Standing together, grounded in the faith and the Word of God, we give Him the glory for all things and are ever grateful for His precious gift of forgiveness of sins and eternal life through the shed blood of Jesus Christ.