Mallorie's been doing great. She's been doing so well, and I've been in a private room, with a huge pull-out couch, and awesome people here who are always trying to figure out what they can do to help me, so I should have been able to update more lately ... but the closer I get to home, the more the lack of sleep the past couple of months feels like it's catching up with me. You should see me; I'm doing what they tell new parents: the baby naps, you nap. I hope to SLEEP tomorrow, while everyone else keeps an eye on Mal.
We tried out the new home CPAP machine last night. It's so QUIET. We won't even be able to use it to replace the white noise machine!
So we're waiting on John to come get us from Beaumont (~ 2 hrs away), and we are so ready.
But not without a huge thank you to all of those who "carried" Mallorie (and me) during this stay. Unfortunately, I can't even list all the names of those who have touched our lives, and given such great care to Mallorie. Some, like Dr. Bill (who never spoke the words, "I told you so," over the surgery which he had recommended/urged even way back when), and nurse C (who brought me food and cocoa mix and STRAWBERRIES), are old friends. Most were new.
This picture is of the most recent group of those who spent hours observing seizures or sometimes what I thought were seizures, waiting to see how she did with extubation, calculating fluid needs :), listening, listening, listening. I am so grateful; I hope they realize just how much.
And an extra thanks to Dr. M, who totally surprised me and made me step up to the plate, by ordering Mallorie a pureed diet from the kitchen!! Before this stay, I'd never moved much past jarred baby foods, but when pureed broiled chicken arrived yesterday, plus a side of nice fatty gravy, and when the dietician early this morning included olive oil among her suggestions for increasing calories in Mallorie's feedings, I was able to dump the chicken AND the gravy into a few bottles with some fruits and vegetables (and even snuck in our old Baby Calm, for vitamin C), and felt such a sense of accomplishment, because we're going home, and Mallorie is going to be fine. Dr. M already gave me her wise advice about not going crazy (told you she sounds like Dr. B from home), and a good part of Mal's daily intake will still be breastmilk, but we are so much further along today than we were in February, when Mallorie turned 3.
But God has been so good to keep Mallorie safe, despite my pig-headedness, and allowed me this 2 month+ "vacation" to be alone with Mallorie to learn.
The Trisomy 18 Connection
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