Baby Sarah’s open heart surgery has been delayed until Wednesday morning, March 18, first thing.  She was without food or water all morning today thinking that she would still be able to go to surgery at some point.  When they were told of the delay they allowed her to eat and she scarfed her bottle down!

She will be without food or water starting at midnight tonight…then she will get two shots in the middle of the night.  Add this to only being three months old equals one unhappy baby.  Please pray that she is comforted during the night and that it is much smoother than anticipated.  She should go into surgery first thing in the morning then straight to the ICU.

I have been quite emotional about the whole thing.  Today, I freaked out because they had an extraordinary time getting an IV.  Actually she doesn’t even have one for the time being, because of the struggle finding a vein, then it blowing.  I have felt the guilt of the world, because I didn’t prepare them with our experiences of IV nightmares and ways to bypass them.  This is their story, not ours, but we share both stories because we are walking them together.  One family.  I called them this evening in a panic (exactly what they needed, right?) trying to fix the problem.  I know I can’t keep Sarah from her story, but I wish it was an easier story.

Many people have asked how baby Sarah is related to us.  She is Aunt Kay’s grandbaby.  Kay is David’s aunt.  Kay went out to visit us in Seattle and has been a faithful supporter of Lydia.  Kim is her daughter, David’s cousin.  Which makes Sarah, Lydia’s second cousin.  Woo…that’s a lot of info!  Did you catch all of that?

As far as Lydia is concerned, we hit another huge milestone: as of today, she is fully weaned from her Tacrolimus!!!  This is her main medication that helps her bone marrow from rejecting her body.  It is an immune suppressant also.   So far, so good.  She will have a month of not messing with her drugs, then we will start the wean of her last rejection/immune suppressant drug.

Things are going so well that Sally and I are taking the kids on vacation to my moms in Florida for the rest of the week.  This will be our first vacation since Lydia’s birth.  David will have his own vacation here at home.  He has to hold down the fort.  He took so much time off to go to Seattle, that he is staying and having a vacation from daddy responsibility.  He will miss us like crazy, but I am glad that he will be able to sleep in a bit, read a book, maybe even enjoy the great outdoors!

Thank you so much for the outpouring of love and support for our babies.  Your warm wishes are treasured.

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