Ramona Mae

I’m trying to make sense of all of this. It must be natural, I think, to try and reason it out when something bad happens to someone you love. What could I have done differently? What if? Why her?
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I’m chock-a-block with “deep thoughts” lately. A friend of ours from Mucca Pazza, accordian Ronnie, teaches music classes with babies. She told with me once that she thinks every baby has their own bounce. A tempo that they will move up and down to in that jerky way that toddlers do.
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When Ramona was on the brink of death last Wednesday, all I wanted was to see her open her eyes one more time. In my grief, I just couldn’t imagine not having a chance to spend one more moment with her. (more…)

It’s show time! Here are three short video clips taken the day Ramona was born. Aren’t they all so cute — Mommy, Daddy, _and_ baby? (more…)

I’m not much for platitudes, especially ones that rhyme. Bumpers stickers that say “Let go and let God” give me road rage. But I think I may have to relax my cynicism in the area of naming things and claiming them in the name of God. (more…)

Babies with Ramona’s condition, Tetralogy of Fallot, are referred to by the nurses and doctors as “tet babies”. As they are removing some of her sedation (the Versed for those of you keeping score at home), she is becoming more aware of her surroundings, has her eyes open more and is just a wiggleworm in general.

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First off, thanks to Jen and Ann and Jon for getting this blog up and running. It’s been so nice to not have to make a million phone calls every time something changes.
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Ramona had a pretty stable night. Her blood gas was down a bit but nothing serious.
During rounds today the doctors were pleased. They continue to lower her Nitric Oxide level and it is now down to 4 from 20.

The big news is that they turned off the paralytic at 9 am. (more…)

I spoke to Jane and Ramona had a long busy day today. Lots of visitors as more family has come into town and I know it was a busy day for Jane and Andy as well.
As Ann wrote the closure of her surgery site went well and Ramona is holding her own. (more…)

Jane just called from the hospital with good news. The closure of Ramona’s chest was successful and smooth. They didn’t have to give her any extra fluid. They had planned to turn the oxygen setting up a few ticks, which they did. The main concern was that she’d be able to tolerate the extra pressure in her body. She has handled it great and is doing well. (more…)