Ramona Mae

I got a lot of calls today from folks saying, “Hey, I read your last blog entry, I hope I haven’t said anything to offend you”. Don’t worry, it wasn’t you! Even if it was you, don’t worry.
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We’re all excited, we’ve got all the gear, we’ve got our makeshift hospital room all set. Now all we need is the baby.
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Excuse the levity, but I’m in a mood.
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Well, we’re hoping that tomorrow will finally be discharge day! We’re coordinating the delivery of an oxygen machine, portable oxygen, pulse-ox monitor and NG tube supplies. I’m getting her room ready, trying to make sure that everything is in the right place. It’s kind of exciting and reminds me of bringing her home from the hospital for the first time.
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Simon was up a lot last night. He’s usually a solid 12 hour night sleeper. As I tossed and turned, listening to him fuss and deciding whether or not to go to him, I had myself convinced that he was suffering terribly from our recent absences. Wrong again.
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I have always felt proud of our son Simon. Proud of the way he charms people. Proud of the way he wakes up each day ready to go, go, go!
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We were further devastated to learn this morning that Ramona has a chromosomal syndrome. Although what this will mean from her is unclear, it does carry with it some risks for immune system problems, mental retardation and palate abnormalities among other things. It is also possible that she would show no further symptoms beyond her heart defect.
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Well the doctors told us at rounds this morning that Ramona will come home tomorrrow! We’re thrilled, proud and terrified.
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Many have called, left voicemail, sent email, pinged me via IM, even sent me messages on MySpace. I haven’t gotten back to most of you, but I want to thank everyone so much for reaching out to us. The past week and a half have been totally overwhelming, but thankfully so has your support.

If I could I’d sit down with each one of you over a beer and tell you how wonderful you are, how beautiful Ramona is, and how proud I am of her. I hope to reconnect with you all soon.

Love, Andy

Today Andy and I have decided to spend the night at home. We are driving ourselves crazy with worry these past 48 hours. Ramona is having her first real setbacks. The doctors have told us over and over again that every patient this sick has setbacks, but it’s just so hard after she’s been recovering so miraculously.
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