Making A Deal With The Daddy

We've been struggling with the feeding tube issue and had decided to meet with the surgeon on Thursday to get his point of view, more information, and possibly a date for the surgery. He informed me that we have 3 surgical choices: (1) a G-tube; (2) a G-tube + Nissen; or (3) a J-tube. All them present their own risks/benefits but any abdominal surgery for Carter will be very risky since he's already had numerous surgeries (due to scar tissue, etc.). We were also hoping that we could have Carter's circumcision done during the surgery since he'll be under anesthesia and will have pain meds.

The night prior to this meeting (Wed), Brad had a feeding discussion with Carter and told him if he would just start eating from the bottle, we wouldn't have the "procedure" done during the surgery. I couldn't believe we had resorted to bargaining with a 3 month old! Well, guess what? We called the following morning to check on Carter and Wonder-Nurse Jennifer had gotten him to take 20 ccs from a BOTTLE at TWO different feeds! We were in complete disbelief. She's such a great nurse that she called us later that morning to go over her magic technique because she would not be back at work for a week and she wanted to make sure we knew exactly what she'd done. We know that Carter really didn't understand what his Daddy told him, but what a story. We'll maintain some sense of privacy for Carter and won't ever reveal our final decision concerning the "procedure."

Brad had to work Thursday, so I went up to try my hand at feeding him. Nurse Linda showed me the magic technique and he took 28 ccs in 20 minutes at his noon feed! It was so amazing to watch him latch on to the bottle and eat like a normal baby. He probably would have taken more, but he ended up falling asleep. It had been a loooong morning with lots of tests and play time, so we decided to let him nap and not push him.

Back to the meeting with the surgeon at 2:00pm. After discussing the options, risks, etc. it went something like this:

• Dr. H "I understand we're thinking of a surgical feeding tube because Carter won't tolerate PO feeding, right?"
• Me "Well...(chuckle)...never mind. I'm not even going to tell you because it's probably just a fluke"
• Dr. H "What?"
• Me "Carter decided last night to start eating! He took 20 ccs twice overnight and just took 28ccs at noon."
• A big smile from Dr. H
• At this point, we decided to delay the decision and give Carter some time. If he begins to take more PO feeds, then we might not need a feeding tube, but if it was a fluke, we'd schedule a surgery next week. Dr. H said we could reassess the situation next Wednesday.

At 6pm Thursday, he took about 5 ccs but wasn't very interested. I left to go to work and Brad went back to Duke--waving as we passed each other on the road. Thursday night, Brad was able to get Carter to take 40 ccs (that's half of what he eats at each feed)! He slept most of the night, so his nurse wasn't able to make much progress on PO feeds overnight. This is what today (Friday) looked like:

• 9am -- 20 ccs
• 3pm -- 30 ccs
• 6pm -- 20 ccs
• 9pm....drum roll please....80 ccs! That's his ENTIRE feeding amount! What's even more promising is that he did this in 35 minutes, including time for burping. Way to go Brad--you hold the record for now.

If Carter continues on this trend, then we might be hearing the "H" word soon. We're trying not to get ahead of ourselves, remembering that Carter runs the show. There are also lots of kinks to work out, like increasing his caloric intake either with increased volumes or increased additives, neither of which he's been able to tolerate in the past. He now weighs 11.5 pounds and is 24 1/2 inches long, but he must gain weight at a faster pace to fight off infections, grow lung tissue, etc.

The funny thing about the progress he's made is that the feeding technique is very, very specific. It requires a great deal of consistency, so Brad and I try to be up there for as many feeds as possible. If it's not done just right, Carter won't take the bottle. He's such a high maintenance kid! Some of the things we've found that work are side lying on his left facing outward, warm milk, supporting his chin, and swaddling just his arms. We have a feeling that once we get him home and limit his "feeders" to only Brad and myself, he'll make even more progress.

For the benefit of other families dealing with feeding issues, we also wanted to mention the success we've seen with his Occupational Therapist applying the Wilbarger Protocol. This should ONLY be done under the direction of an OT because it has dangerous consequences if not done correctly -- please do NOT look it up on the Internet and try it at home without a therapist's direction. It's a form of sensory integration therapy, which involves brushing the skin and joint compressions. The idea is that it helps to organize the sensory system and to increase focus and alertness. Although it's only been done a few times, it is greatly helping Carter with his sensory defensiveness. Part of Carter's eating puzzle involves his sensory defensiveness, so progress with one improves the other.

Please say lots of prayers that he stays interested in drinking from the bottle. There are many people, not just from Duke, who have played a role in trying to figure out Carter's puzzle and we thank you. A specific 'shout out' to Kelly Dreyer, OTR at Cincinnati Children's Hospital and Leah Hanson, OTR at JZ Mann in Jacksonville, NC for all of your help. We don't know where we'd be without you two!