John thought Mallorie was asleep as he walked near her crib, but he heard the sound of her lips smacking, and got this picture. THIS is something completely new for her; she has almost never sucked on her fingers or anything else, and we don't know how much of that was that she never had a good lip seal, and how much was that she had such a strong oral aversion. She's had so much un-fun stuff done to her mouth (suctioning, mouth appliances to pull the hard palate together before the first mouth surgery, a total of three mouth surgeries, and that time in February when she was on the vent for so long). Oral aversion was to be expected, and is part of why speech therapy is so important for her. So it makes stuff like this all the more exciting.
We go back tomorrow to get the tube taken out of her nostril. She somehow pulled/prodded it out today, and freaked the kids out, so they pushed it back in before I ever saw it. It's bothering her a lot, so it will great to have this over with for her.
And yesterday she let me give her some baby food (fruit) by mouth and nothing went up into her nose, as far as I could tell. This makes me VERY hopeful that the surgeon was right, and he might just have closed the opening between her upper lip and gum.
Oh, and her extremely smart and wonderful pediatrician has always had a problem with what she called us "rushing to cut on her." She is so very protective, and I say (to myself) that it sometimes feels like she's another mom for Mallorie. She's certainly taken some ownership rights, and gotten all huffy about certain issues ... which in MY blog shall remain undiscussed. :)
So, Dr. B? It's looking like it was worth it all, huh?
In October 2006, we went for an ultrasound for our fifth child, and were told that our daughter probably had a chromosomal defect. We were urged to get an amniocentesis so that genetic testing could be done, “so the doctors will know what decisions to make.” The specialist told us that he suspected Trisomy 13 or 18, and if he was correct, then no OB would do a c-section because it wouldn’t make a difference for the end outcome. Besides, no surgeon would operate on her back (she had a meningocele – spina bifida), because “Trisomy 18 and 13 are what are called lethal conditions. They are incompatible with life.”
That’s how our story with her began, but it is most certainly not the end. As her amazing pediatrician said about examining her at birth, “I looked into her eyes, and she looked back at me and said, I’m here for the long haul, chick.”