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rubys story
first day, christmas eve.
we knew nothing about rubys jaw before she was born. We didn't know if it was a genetic condition or just a deformation.
But it was christmas eve, so no specialists were coming in to see about her. so they kept her on her belly to keep her tongue from blocking her airway and kept her on a cpap machine. things were not looking very good at that point.
two days later, she got transferred to childrens hospital in new orleans.
balancing our need to be in new orleans with ruby and at home with melody was a trying and heartbreaking task.
after being in nicu for a month, undergoing tracheostomy and g tube placement [feeding tube], she was discharged. we had to learn how to take care of her trach.
Brandon decided that he was going to quit his job and quit school and stay home with Melody and Ruby until we knew more about Ruby. The plan was that Ruby was going to have surgery at ten months old. He would stay home with them until then.
Childrens hospital started to suck. We drove three hours with a trached infant one morning because they forgot to tell us they cancelled an appointment. then they kept pushing back the appointment to schedule surgery.
I got frustrated and called tulane which is also in new orleans.
even as she got bigger, her jaw didn't grow much.
the surgery that she needed was called a jaw distraction.
tulane and childrens are the only hospitals in the region to do them, and tulane was willing to do it months before childrens would even see her.
so we went with the quicker hospital and ruby had her jaw surgery in January.
the surgery was disgusting. they put a device on each side of the break. the device also had rods coming out from behind her ears. we had to take a special screwdriver-like tool and attach it to those rods and turn them. as we turned it, it stretched her jaw forward. we had to do this for ten days. it was a stressful ten days.
I had some pictures of the small difference in her jaw you could see from day to day, but they are taking a while to load. :[
here is a before and after
her jaw looks crooked because it is.
doctor thinks that after a few months of use, the muscles will pick it up and put it in place.
there is still a device in her jaw [which is why it looks crooked].
ideally, it should stay in her jaw for 3 months to help support the new bone as it grows... however... it is too big for her small mouth and it caused her incision to open up and become infected.
so, we are having her final surgery next week to remove that device.
we have been given the ok to consult with a pulmonologist about removing her trach.
she is almost done with her jaw journey.