Namine was born with Pierre Robin Sequence. It’s a condition that affects children differently at birth; in Namine, it resulted in micrognathia and ankyloglossia.
Namine has had several surgeries to help her airway: a tracheostomy breathing tube, a jaw distraction, the removal of the tracheostomy tube (once her jaw was far enough forward that she could breathe unassisted), and a partial frenulotomy.
Hello to Everyone, Paul and I brought Namine in to see Dr. Denni this past Monday to find out when she will be able to have her jaw distraction done, so we can remove the trac and g-tube. It was mostly bad news but some good news. We have to ween her faster off of the vent then we have been doing. ...May 24, 2009
Jaw distraction on Dec 1
The post title says it all. As we said before, Namine's jaw distraction would occur sometime last this year or early next year. But Jessica got a call today from Children's Hospital that they would do Namine's distraction on December 1 of this year. Needless to say (but I'm ...Sep 23, 2009
Palate closure successful!
Well, kids, that was fast. Not long after I had finished updating the blog, Dr. Denny came out and said he was done. It turns out that since Namine was already asleep, he just started without coming to talk to us. Namine was, as always, a great patient. They were able to do a 2-sided closure; that ...Jun 3, 2010
A sudden lack of trache
I'm happy to say that Namine is safely home, and she's asleep in her own bed again. I could tell the day - and the whole hospital stay, even though it wasn't that long - took a toll on her, since she fell asleep within 10 minutes of laying her in bed. She's sound asleep now, and her O2 is nice and stable. I just ran in the bedroom to check on her, and her O2 is at 88 right now.* Anyway, read on for how things played out at the hospital. I warn you, though - I've written quite a book tonight. Also, feel free to share the link with anyone else who follows Namine's progress but might not see this post.Sep 15, 2010