21 days

My man is three weeks old! Time really has gone fast for us! Liam no longer looks like a newborn, he is so stinkin cute!!! I cannot wait for all of you to meet him! His pictures to not do him justice.. Starting last night a fatty substance started to appear inside his chest tube drain! They called it chylous! They said it most likely happened during a surgical procedure! I asked if it was common and they all said yes! Most of the cardiac babies have experienced this! The one set back is to discontinue his breast milk for 7-10 days depending on if the substance slows down with this medicine they started him on today! It's a med that is supposed to dry excess fluid! Hoping and praying it slows it down, if not procedures might need to take place to help it and he might need to be on a special formula for 6 months! Prayer chains are needed please!!!! So today they sent him to the cath lab to have a heart cath completed and while they were there they placed a more stable med line in his right leg since the other one was 21 days old and they are not supposed to stay in that long! This is Thea line that all of his medicines go thru.. His heart cath came back good! The one side of his heart is weak where the blue blood circulates back but his heart surgeon said that can be treated with meds and it's not something that surprises them with his heart defect! But everything else measured good! Thank you god!!! She also said that Liam has found all the annoying things! Fixable but annoying! That is always good to hear! So with all of this.....last Night they tried sprinting on Liam. He did not do very good. His left lung ended up collapsing! So back up on the vent! Please lord let my little boy be able to get off his ventilator. My biggest fear is that tube and not being able to remove it!! So now they need to slowly wean him down again and do some treatments to improve that lung! Still weaning off his sedation meds, he is doing pretty good with it! Methadone and valium both introduced now to help with his withdrawls! So that is a positive! No arrythmias for the past three days so they are going to wean on his amiodarone to see how he does and make a decision on what anti-rhythmic he should be on long term! He has been thru more in 21 days then some people experience in a lifetime!! But he really is our superhero and our miracle! Please continue prayers! A message was sent to me and I think about it often! The poem FOOTPRINTS I try to remember during the hard times that god carries you through it all and we are never alone!!