A few times a day, Barnaby will stop breathing and his heart rate will drop. Alarms sound, nurses rush in, time stands still. In most preterm babies this “apnea of prematurity”, colloquially known as “spells”, will resolve at 34 to 36 weeks gestational age. That means that we have many more weeks of this terrifyingContinue reading “Spells are scary, Day 23”
Author Archives: rossbeane
Another respiratory milestone, Day 22
Yesterday Barnaby graduated from CPAP mask to nasal cannula. With no straps around his head this is a much better situation for his shunt, is probably more comfortable for him physically, and requires a lot less adjusting all of the time. It is also delivers significantly less pressure from CPAP and it is a littleContinue reading “Another respiratory milestone, Day 22”
How will we know if brain surgery was successful?
First some background info: Ventricles are voids in the brain filled with Cerebral Spinal Fluid (CSF). When brains develop a bleed, which is common in premature babies, blood gets added to the CSF causing the ventricles to expand and push out on the important bits – this is called Hydrocephalus. There are several possible treatmentsContinue reading “How will we know if brain surgery was successful?”
Extubation, Day 19
Barnaby came off the ventilator today and is on CPAP via a nasal mask that straps to his head and makes him look like an elephant seal. 🦭 The thought of being intubated while fully conscious is a terrible one, it’s something an adult would never tolerate. Still, it’s hard to say if he looksContinue reading “Extubation, Day 19”
Prelude to Barnaby.blog
This site will be updated periodically with updates about Barnaby. If you scroll way back the first post is about his birth, but that of course is not the beginning of the story. Ana’s pregnancy was generally uncomfortable. Both because of sustained “morning sickness” that was really all day nausea for the first trimester andContinue reading “Prelude to Barnaby.blog”
Day 18
Morning rounds just finished. The doctors basically don’t know what Barnaby is up to. We came in early this morning to sit with him and it’s so hard to tell what are normal movements that we might have seen before and what are artifacts of what was happening last night. He isn’t having the kindContinue reading “Day 18”
After Surgery Complications
After surgery we were back in the room with Barnaby and he was sleepy and kind of staring off into space barely blinking as he came out of anesthesia. Ana and I were both exhausted and hungry, we had gotten here early this morning and done a lot of stressful waiting so we went toContinue reading “After Surgery Complications”
A wise old turtle gave Barnaby his first haircut
Ana thinks that Barnaby’s Surgeon at Children’s Hospital looks like a wise old turtle 🐢 . He is one of the most esteemed pediatric neurosurgeon in the world. A recipient of the macarthur genius grant, a professor at harvard medical school, and he literally invented one of the surgeries commonly used for barnaby’s condition ofContinue reading “A wise old turtle gave Barnaby his first haircut”
To Boston Children’s
Barnaby just took a ride in his transport “bus” down “the pike” to children’s hospital. We met Dr. Warf and he was very nice. Now we are in the waiting room here at children’s. They expect the procedure to take about an hour and a half but said not to be alarmed if it goesContinue reading “To Boston Children’s”
Surgery Scheduled
Tomorrow Barnaby is headed to children’s hospital for an operation to get a ventriculosubgaleal shunt. This is a procedure that will hopefully prevent the need for a more permanent shunt (the kind that drains excess spinal fluid into an abdomen through a longer tube) and is much more effective on very small babies. This “subgaleal”Continue reading “Surgery Scheduled”
Barnaby 