Not a good day

Things have kind of been a blur for us tonight (10/8).  All the medical terms have been overwhelming.  I'll try to give an update on Alyssa the best I can.  After starting Alyssa's open heart surgery, they went in expecting to do the Norwood procedure, which is the first step to rerouting the pathways of the heart to work for her body.  Once they got in there, they were able to find the aortic arch (which they hadn't been able to find during our echos).  However her aortic arch was not only undersized (as expected) but it was also on the wrong side.  So her already rare heart defect became and even more rare one.  Her diagnosis changed to Hypoplastic Left Heart Syndrome with right aortic arch with an aberrant left sub-clavian artery.  Right aortic arch is estimated to be present in about 0.1% of the normal population.  Because this is such a rare condition they decided to close her chest up so they could research the best possible way to repair her heart since the Norwood is not an option until they figure out what to do with her arch.  She was then sent to cath lab so they could put dye in her veins and figure out where each one is going to and from the heart.  They wanted to have all the information possible re: her unique anatomy before devising a plan of the best course of action.  This is where things went downhill.  For some reason her body started crashing after the cath procedure was complete.  It appeared that she was bleeding internally as her abdomen didn't appear right and her BP started dropping quickly.  They then opened her belly up to look for bleeding but didn't find much.  They did find lots of fluid and her intestines and liver appeared swollen and grayish due to her body trying to get all her blood to her heart and brain and not enough to her tummy area when she was crashing.  They had to start chest compressions on our baby girl and had to do CPR for quite sometime while they got her hooked up to ECMO.  Because she is sedated, intubated, and on ECMO life support, we will not know for awhile whether there are any brain injury from lack of oxygen.  The doctors are still unsure what caused her body to vasodilate; right now the only thing they can think of is that she may have had an allergic reaction to the dye that was given.  

So right now our baby lays on an operating table in a procedure room while a team of doctors and nurses work continuously on her body to adjust every little thing and get it more stabilized.  There will be two nurses, an intensivist, and a technician for the ECMO machine in there at all times throughout the night.  She will be receiving round the clock care.  At this point our little Alyssa needs a miracle. She also now has mottling of her legs; a sign of just how sick our little baby is.  The plan is still up in the air as for what will happen next.  We are just trying to give her body time to rest for 24 hours and go from there.

Tomorrow is Chris and my 8 year anniversary and tonight when I go to bed, I will be praying for the best possible gift. For our little girl to receive some kind of miracle.