February 17, 1995 - Dear Geordi. Today your entire world was
completely pulled apart. For the first time since the day we took you
home you were no longer able to reach for me when you wanted a
snuggle and I was no longer your primary caregiver. Both of us are
going to have to learn to adjust little one. You are going to have to
find the will to live on your own and I am going to have to relinquish
responsibility to others who don't love you as we do. It is devastating
watching you all covered in tubes and needles...but it is necessary
or else you'll probably die. The day we bring you home again will be
as wonderful as the day we first brought you home.
February 18, 1995 - We said goodbye at 1 p.m. and got the good
news at 5:45 p.m. They reconstructed your pulmonary valve and
widened the artery. Then they plugged those annoying holes. After
the surgery you looked incredibly peaceful and beautiful. You really
reassured me...and you were pink - not blue. Many, many hugs and
kisses little one.
February 21, 1995 - You just had a major tube removed today! We're
making progress! You just took this pen when I offered it to you - but I
realized that right this minute - it's been 71 hours since you came out
of surgery - you're over the major hurdle - out of the danger zone!
Way to go wonderful! I love you.
February 23, 1995 - Well tough stuff, you've just had your first set
back, and they've decided to restart some drugs. You have a very
sick heart and it just wasn't ready to work all by itself yet. You are
keeping much calmer than Mommy though. Necessary pain. That's
the pain you need to survive. It's a Mommy's job to spare you
unnecessary pain. I hope some day I can make you understand.
February 25 1995 - You are breathing on your own. That nasty tube in
your nose is going to come out this afternoon.
February 27, 1995 - Found out you started wheezing late Saturday night. They think you have a touch of pneumonia - just another plunge on this roller coaster ride...at first we were a little frightened but you see to take it all in stride and are looking very comfortable considering it all. So I guess you're going to be here a few more days.
March 2, 1995 - The doctors have no idea why you are so sick. You have made no improvements in the past week that you didn't lose again last night before they put the breathing tube in your nose. Did you ever fight their attempts to help you, that sight will haunt Mommy the rest of her life. I hope you never remember.
March 4, 1995 - Sweetie, you are hooked up again to the tubes. Yesterday all you were connected to was the ventilator. The doctor's don't understand why you're not getting any better. They even have you back on muscle relaxant. Are you giving up on us sweetheart? Is the shock of this too much for you?
March 6, 1995 - I asked just how sick you were - unfortunately questions like that trigger concerns from doctors and nurses and next thing I know I've got a doctor looking me straight in the eye telling me that you are not going to die and perhaps I should talk to somebody. It is okay to cry. I am worried little one. I am desperately afraid to lose you. You are very, very sick - I can't believe how sick you are. Can you every forgive me for giving you a bum heart?
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