Recovery and a Set-Back......

  Lily had made it through the first and most risky of a series of three surgeries that would hopefully save her life.  I was so relieved to see my baby girl.  Even with all those IV lines, wires, and a blood transfusion, she was beautiful and precious to me.  At this point I was on my maternity leave from work.  My routine was basically waking up in the morning, showering, getting dressed, and making the 30-45 minute drive in to CHOP each morning while Jeremy went to work.  I spent about 8-9 hours every day sitting at Lily's bedside watching, waiting, and learning.  Between all the watching and waiting I was also pumping breast milk every 2-3 hours which was frozen and stored for a time when Lily would hopefully be able to have nutrition by mouth.  Do you know what it does to a new mother's mind to not be able to feed your child or see them eat?  I took excitement in each diaper change, each medication that was stopped, each bath-time, etc.  It was my time with my newborn daughter, and it may have not been conventional, but it was all I had. 

  About a week or more into Lily's recovery the doctors had begun noticing that her oxygen saturations were running borderline low.  On a good day Lily would hover around 73-75, but on bad days she would dip at times to the mid-low 60's.  No one seemed to be too concerned.......  While we were in our pod at CHOP there was a constant "parade" of new babies and families who would be moved in and out.  I heard so many stories of heartache, babies not being diagnosed until birth, mother's from all across the family and world who were forced to leave everything to come to Philadelphia, PA to be with their heart baby.  It can at times be quite depressing, and quite lonely.  I saw babies pack up and get to leave CHOP, I saw babies code and have to be brought back with paddles, I was there when close families lost their child and the entire unit visited them to pay their respects and cry.  CHOP's slogan is "Hope Lives Here", and I cannot think of a place that is more deserving of these words.......

  It finally did become apparent after several additional echocardiograms that Lily's coarctation of the aorta was a bit more significant then what the doctor's had anticipated.  They were convinced that by ballooning the aortic arch area it would allow for better blood flow and thus improved oxygen saturations.  After consult with interventional cardiology it was determined Lily would be scheduled for a cardiac catheterization to go in and take measurements of the aortic arch, and then most likely balloon the area.

 The procedure was scheduled for the following day or so and Lily was wheeled off to the cath lab.  We again took up camp in the waiting area of the CICU to hold our breath and wait for updates from our nurse.  

First update- she is sedated, they are in the artery in the right leg, all is well, they are waiting to take measurements

Second update- the measurements are done, they have decided to balloon the arch

Third update- they are finishing up, all went well, she should be finished and wheeled back to the CICU soon

Fourth update- there was a complication while they were removing the cath line, her artery was nicked and she is bleeding internally.......WAIT.....WHAT???

Fourth update- My name is Dr._____ I am the vascular surgeon here on-call at CHOP.  Your daughter is bleeding internally and is in very serious condition.  I am going to go in, stop the bleeding, clamp the artery, and try to save your daughter's life.

  At that moment, I believe my life was shortened by a few years, and I may never be the same.  How could we go from so good to very, very BAD in such a brief moment??  All my husband and I could do was wait...........