Intro an Questions About Feeding

iVillage Member
Registered: 04-14-2010
Intro an Questions About Feeding
Thu, 02-10-2011 - 4:23pm


I'm new to the CHD comunity and I'm looking to meet other parents.

My son was born with Tetralogy of Fallot with Pulmonary Atresia last November, and he just had his first surgery last month at 2 months old. He's now 4 weeks out from surgery and he still has his NG tube. He didn't have any feeding problems before his surgery, and his sats are higher now than they were before. They put him on a schedule of 2.5 oz of fortified breastmilk every 3 hours when he was in the hospital, and whatever he didn't finish was put in the tube. He did okay for awhile, finishing the 2.5 oz or close to it at least a couple times a day, but he's since been needing more and more of his nutrition put through the tube. I realize that he's still probably recovering from surgery, but I'm wondering if anyone else had a similar experience. I know that some babies have NG tubes for many months or even years, but my little guy was doing just fine before the surgery. I'm kind of baffled as to why its taking so long for him to build up his endurance again. Am I just being impatient?


Avatar for hokie1999
iVillage Member
Registered: 03-27-2003
Fri, 02-11-2011 - 4:40pm

Hi Lesley,

Welcome to the board. My son had his first open heart at 2 weeks and I don't think he ever had a feeding tube. Are you working with therapists and GI docs? Gabe did end up having feeding issues later in his first year though. Definitely mention your concerns to the doctors and see if they have a plan for getting him off the tube.

iVillage Member
Registered: 04-14-2010
Sun, 02-13-2011 - 4:00pm

Thanks, Caren and Becca!

We have been following up with his cardiologist since we got home from the hospital, and we have a home care nurse who comes to the house twice a week. They're all aware of the issue, but they're taking more of a "wait and see" approach. At the hospital, the nurses told us he'd be a new baby after his chest drainage tube came out, but that didn't seem to solve the eating problem. Then, they told us he'd be so much better with eating once he got home into comfortable surroundings. He's actually seemed a little worse. Now they're telling us that he'll probably improve when he's done with his 6-week course of antibiotics (he got a staph infection a week after surgery).

Avatar for Cmmelissa
iVillage Member
Registered: 11-13-2008
Wed, 02-16-2011 - 4:20pm

Hi Lesley, welcome to the board!

iVillage Member
Registered: 09-30-2007
Wed, 02-23-2011 - 5:22pm

Hi Lesley! I have a TOF baby..well toddler as well! My little guy never had a NG tube so I can't offer any advice there- but I just wanted to say hello, and welcome to the board!

iVillage Member
Registered: 02-20-2007
Tue, 03-15-2011 - 8:38am

I would definately call his cardio doctor as his feeding has declined (if I am reading your post right).