Category Archives: Update

Click play above to listen to Micah Motenko, who is an old friend of Jasmin and wrote this song for Barnaby. We have been humming it nonstop and it’s proven so catchy that nurses in the NICU who have not even heard the recorded version are singing it because they’ve heard Barnaby’s nurses singing it!Continue reading “Barnaby Music”

Barnaby is off CPAP. They decided that he was doing well and it was time to try him breathing completely on his own.  They replaced his feeding tube around that same time and for the first time we got a photo of his little face with nothing taped to it.  In the ebb and flowContinue reading “The Ups and Downs of Breathing, Day 45”

As of yesterday, Barnaby is on a CPAP pressure of 5 cm h2O. This pressure is achieved by literally dipping the outflow tube from his mask five centimeters deep in a cup of water where it bubbles away, keeping a constant air pressure flowing to his lungs that is the equivalent weight of that muchContinue reading “Lowest Possible Respiratory Support, Day 41”

At this point, the team thinks that his spells are back within typical premie territory. The doctors have given him an allotment of 5 spells per day based on what they consider normal development and he is not going over his limit most days. Many of his spells seem to be feeding-related, and a fewContinue reading “Barnaby is Doing Great, Day 37”

We started the week trending in the wrong direction.  Barnaby’s tachycardia (low heart rate) spells were increasing in frequency and severity. Also concerning was that these low heart rate moments were not always accompanied by apnea (breath holding) meaning that there was some other underlying cause. There are a lot of reasons why this couldContinue reading “Mysterious Problems with Mysterious Solutions, Day 34”

Today we spent a little more time at home and a little less time at the hospital. When we there this morning it seemed like our little guy needed to rest and the stimulation of having us touching him and reading to him was causing him to drift and spell more, shallow breathing leading toContinue reading “Finding Rythm, Day 29”

Generally good news over the past two days. Yesteday he had a head ultrasound and the results were stable. His head has a sizeable boggy lump of fluid under the skin where the shunt is draining. At this point they think the bleed has stopped completely which means that the shunt is still flowing becauseContinue reading “Progress, Day 26”

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”

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”