"Whether we are filled with joy or grief, our angels are close to us, speaking to our hearts of God's love."

Monday, April 26, 2010

April 26, 2010

Very early yesterday morning they had to stop Benjamin’s feeds because his belly circumference had increased even more, he was developing a lot of redness below his incision line, and he was so lethargic. They decided to start the antibiotic again in case he had an infection. We spent almost the entire day with him and knew something just wasn’t right. He opened his eyes maybe two or three times for a few seconds. Ryan gave him a manicure and that didn’t even bother him!

An x-ray was ordered as well as an ultrasound and they didn’t show much. There seemed to be a little widening of some areas of the “good intestine” (the part before his ostomy) and a potential kink near where the ostomy comes out of his abdomen. One of the surgical fellows had been dilating the stoma (trying to open it up and stretch it out a bit) a few times a day for the past couple of days, but that wasn’t really doing the trick.

On the way home Ryan and I were wracking our brains trying to figure out what was wrong with him. It’s great when an x-ray or and ultrasound doesn’t show anything alarming, but it’s extremely frustrating when there are no answers. His little tummy just keeps getting bigger and bigger and no one can figure out why. He’s growing so that’s part of it, but it’s still measuring a lot larger than it should.

The ultrasound did show calcifications in his kidneys. We were told this is due to the lasiks he was given to help him pee. So, today he was given another drug to try and clear up the calcifications.

The antibiotics must have helped a lot because when I got there this afternoon he was getting back to his usual feisty self. He actually pulled his feeding tube out of his nose twice! His belly is still measuring the same, but the redness is gone. He’ll be on the antibiotics through the week. They don’t want to start his feeds back up until they notice more output out of the ostomy.

Dr. Zahr, one of Benjamin’s neonatologists from South Shore Hospital, stopped by to see him this afternoon. I was so happy for his visit! Ryan and I are still in awe at how many people truly care about our son and how he’s doing. It’s extremely touching.


  1. Glad to hear that the xray and ultrasound didn't show anything alarming and that the antibiotics seem to be doing the trick!! Still praying every day for my little friend. :) Love you!

  2. you guys are just amazing! so glad his belly seems a liitle better! sending love your way!