It’s a very surreal feeling, being back in general care. We were here once before for a very short time. We thought then that we were on our way home, that was two weeks ago. Hopefully this time will be different. It feels different. All that stands in our way is one more trip […]

We got to go for our first walk outside with Evan today. We put the two med pumps that he’s still on with us in the bottom of the stroller and went out for a 15-20 minute walk in the huge courtyard. Evan was asleep before we ever even made it outside and never opened […]

Since reloading the phenobarbital and continuing the maintenance dose Evan has not had any more seizures. This afternoon he was removed from the EEG and we gave him a nice bath to get all the wax and adhesive off of him. He was awake and alert for a very long time today, from about 10:30am until […]

The doctor’s restarted Evan’s feeding yesterday afternoon, and recently increased him to 6 mL/hour. They will keep increasing him every 8 hours until he’s at his goal intake of 22 mL per hour and then they’ll switch to 44 every 2 hours, and then 65 every three. This will take several days to get him […]

The short of it: Evan had a seizure early this morning and several more throughout the day.  They are the result of a stroke he had some time ago but not sure when.  He is comfortable, sleeping, and stable.  His brain activity is being monitored continuously for 24-48 hours.  He is NPO again (removed from […]

It has been seven days since Evan’s cardiac episode (NEC scare) and the surgeons are slowly starting to feed the little guy again. This morning they started him out at 3 mL per hour for 24 hours. It’s being pumped directly into his stomach through an NG tube continuously. If there are no bad signs by […]

It may not seem like much, being one month old… but given what Evan has gone through in his short time here we wanted to celebrate a little. Evan, You never cease to amaze us. Every coo, every quivering lip, every smile, every scowl, every cry, every movement, and every look of amazement as you look […]

Sorry for the lack of updates the last couple days but as they say, no news is good news. Evan was moved out of the PCTU yesterday (Friday) morning and back to moderate care. He has not had any more episodes and he’s looking much better. Pediatric surgery has been following him and they have […]

  As you read yesterday things went really crazy really fast. Evan is now stable and relatively happy back in the PCTU. The echo, x-rays, blood gases, and cultures are not pointing to NEC which is great. Because he had some symptoms and because the doctors take NEC very seriously they are treating him with IV […]

Being in general care is pretty nice.  The room is a typical hospital set-up; 2 beds in the room separated by a curtain running down the middle.  There is also a couch that can be used for a bed, meaning Evan would be able to have an overnight visitor.  I elected to stay overnight with […]