Pierre Robin Sequence
Pierre Robin (pronounced “Roban”) Sequence or Syndrome (PRS) is a condition present at birth, in which the infant has a smaller-than-normal lower jaw (micrognathia) or set back from the upper jaw (retrognathia), a tongue that falls back in the throat and obstructs the airway (glossoptosis), and difficulty breathing. Most infants, but not all, will also have incomplete closure of the roof of the mouth (cleft palate), and is commonly U-shaped.
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Distracting Namine
Namine had a doctor’s appointment earlier this week. We took her in to see Dr. Denny, her plastic surgeon, who looked at her jaw and distractors; he said she’s doing better than he expected. (We get that a lot.) He told us to keep on with the distracting process through Sunday, then to bring her…
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Going home today
Hey everybody, we’re finally going home! Namine is doing a lot better this morning, and the special needs doctor has given the okay for us to leave. Namine still has a lot of secretions this morning, but the raspy sandpaper noise she was making is gone. She’s also feeling better all around. The “stranger danger”…
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Not home yet
We had planned on Namine coming home yesterday, but that didn’t happen because she’s had more secretions than usual. We then hoped that Namine would come home today, but now that’s not happening, either. Namine has a potential trach and lung infection. She also has a possible C-diff infection. This is a severe bacterial infection…
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Today
Namine has had quite a busy day. She was sitting and playing and visiting with Great Grandma and Great Grandpa and watching it snow. Namine also has hit the stage of stranger danger. It has not been fun all day. Everyone that has come into the room that was not family she cried and clung to…
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Contentedness and misery
I am home now. The plan is to get some sleep – actual sleep in my own comfy expensive bed – before going back to the hospital tomorrow morning, then going to work. But first, an update! Because much has transpired in a single day, and it feels like we’ve been there a week. We…
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What time is it?
I’ve been up all night, trying to make sure Namine doesn’t pull out her distractors. Even through the haze of drugs and wooziness of a tiring day, she still makes plain her dislike of artificial attachments.
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Jaw distraction complete
Namine’s jaw distraction surgery is done and she’s doing well!
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Surgocalypse Now
After a hard morning, Namine is in surgery now. Waiting and not knowing is always hard.
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Clinic Visit
Good news from the plastic surgeon, plus more excitement than we planned for.
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Namine is in the PICU
I know lots of people are waiting with bated breath on how Namine is doing, and I can’t type any faster. Jessica and I were going to see how Namine did today, and perhaps take her in this evening if we felt she wasn’t doing much or any better. Well, that was this morning. But…
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I made Namine throw up today
It was not purposeful, believe me. Namine, as I’ve posted recently, has had a lot more secretions lately, and we weren’t sure why. She’s been on an antibiotic for roughly a week now, but that doesn’t seem to be helping. Namine started to gag this evening during one of many suctionings (is that even a…
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Sick girls
So we got back from the Aurora Urgent Care clinic around 6-ish. Jessica has been feeling unwell – that’s putting it mildly. She’s been feeling nauseous and occasionally, sometimes more than occasionally, throwing up. So we went to the Urgent Care clinic, and found that it’s most likely her gall bladder. The clinic doctor gave…