Mouth of the South: The Bottle

As you have noticed from previous posts, Ayden, like most babies, likes to investigate everything as a possible chew toy. He obviously has demonstrated that his experiences in the hospital have not affected his curiosity in that arena. However, I mentioned in the past that we were concerned that Ayden had a liquid oral aversion that might be contributing to his unwillingness to make progress with the bottle. Well, though I will not totally disregard that as a possibility, as I am still not thoroughly convinced that he actually likes his Cheez-Its anymore, Ayden has begun taking 25-60ml by mouth! He tends to be more disinterested (and more fussy about the bottle) in the mornings (his 8AM and 11AM feeds), thus producing numbers in the 20's and 30's. In the afternoons and evenings, he becomes less stubborn, and he clears the bottle quickly and effortlessly. (I am told that there are other babies that demonstrate similar behaviors of eating more in the afternoon and overnight. For some reason, when a baby awakes from a nap or from sleeping at night, he/she munches away! Perhaps he/she has more energy to do so.)

I have been asked many questions about the feeding tube. Yes, that long yellow tube protruding from Ayden's nose is a feeding tube that leads directly to Ayden's stomach (NG feeding tube). Whatever Ayden won't take by mouth, he receives through his tube. Some have asked me why we don't just yank the tube out of his nose to see what he will do. I'll admit that I think about that daily. (The reason Ayden became a bottle feeder the first time was because we didn't put a feeding tube back in him.) My concern is for if Ayden won't take the amounts necessary to keep him hydrated and well. Plus, if a feeding tube has to be put back in, it is horrific to watch him scream and get all worked up, especially when I'm the one that has to put it back into him. We don't wish to cause any undue stress on him during this fragile time. Besides, I believe that after the Glenn, a lot of things are going to get better, including his feeding issues.

Some interesting things about Ayden bottle feeding are as follows:

• Because Ayden is a Norwood baby, he can only take the bottle for ten minutes. The reasoning is that bottle feeding is work for his heart, and we know that it tires him. I have discovered that the time limit is really irrelevant for Ayden. If he decides that he wants his Cheez-Its, he accomplishes all that he wants in far less than ten minutes.
• Ayden is a temperature snob. I blame this on Denise because she has trained him to desire the formula at a certain temperature. If it isn't exactly right, he won't take it. If the formula becomes colder during his eating, he will stop eating until I have warmed it back up again.
• Ayden gets distracted easily while eating. He is already an observant baby, so if the tv is on, the fan is moving, or there is another person in the room, those things are far more exciting. The last time that we were at clinic, Denise hid in the hallway with the patient room door slightly cracked so that she could still observe Ayden eat. At 42ml, Dr. Kavanaugh opened the door to tell me the answers to some of my questions (I'm sure she was wondering what in the world Denise was doing!), and when she realized that Ayden stopped eating to watch her, she held a sheet of paper over her face and pretended to be an inanimate object. Denise and I were laughing, and Ayden was transfixed on the new talking "object" in the room. He wouldn't eat anymore.

Mommy is laughing at Daddy, who is crawling in the floor trying to be stealthy with the camera.

• Ayden now wants to sit up to eat. No longer can one use the famous Boppy or try to cradle him. He's a big boy now!
• Since Ayden continued to show signs that he was hungry and not receiving enough food, Dr. K increased his volume to 100ml, but she didn't want him to continue to gain so much weight, so she decreased his calories to 24. At clinic on Tuesday, Ayden was 6.4 kilos, or 14.08 pounds!
• Our baby boy refuses to burp. No matter how many times or how long or how many positions I try, the kid does not burp.

Why does she keep trying? Seriously!

• Dr. K told me that, assuming nothing unusual happens after the Glenn (which is always a possibility), Ayden does not have to go back through the feeding protocol. She said that it was "empirical," to her, that he return to his current feeding situation. (She later had her assumptions verified by the nutritionist.) That means no swallow studies, no continuous feeds, no Mommy arguing with people (at least not about that). I cannot tell you how relieved I felt at hearing that information! The reasoning for why he does not have to go through the protocol again is because Dr. Bichell is not surgically working in the archway that interferes with feeding. In addition, Ayden will no longer be a Norwood baby; he will be a post-Glenn, which means that his status is not as a critical, and there aren't as many concerns about his safety with regards to eating. Disclaimer: Dr. K did tell me not to be surprised if Ayden regresses a bit in several areas, such as feeding. The hospital is a difficult environment; sometimes children take up to six weeks to overcome what has happened to them.