Here is an explanation about Will's feeding. I share this partly in case others want to understand but also because we're going to want to read this one day to see how far we've come.
To summarize: Will has
oral aversion. This means he associates swallowing with negative stimuli. A
severe oral aversion can sometimes mean that they won't allow anything to touch their face or enter their mouth and they could cry at the sight of food or a bottle. Will's is not that severe. He will take a pacifier when he is tired, he puts his hands and toys in his mouth, and he will also swallow some of his medicine. In the past if I let him get really, really hungry he would nurse and take small amounts. And when he has gone awhile without eating (after surgery for example) he will forget that it used to hurt when he ate from a bottle so he will eat a little. Until his reflux reminds him that it hurts to swallow. Also Will hasn't experienced hunger much and he doesn't realize that he needs to keep eating to fill his stomach. I don't think he understands hunger or that he has the power and responsibility to make it stop by eating.
As much as we wish we could just pull his feeding tube out and let him try to figure out eating on his own, we have seen it won't work. We did some trials of things here at home and he just didn't eat enough. If we continued to do that for a day or two Will would become dehydrated. When one is dehydrated they are given an I.V. of fluids. Watching Will get an I.V. is very hard. [I think heart babies tend to have this problem. It's as if he feels the pain of the needle stick and clamps down (so to speak); his blood vessels tighten and the needle can't go in. That's my unscientific description, but I have seen nurses repeatedly try and inevitably I.V. specialists are called in to help. Once I saw the night shift give up on trying to get an I.V. in him so they let the day shift try. When those day shift nurses and specialist tried I heard them say "We'll just let the night shift try". In the meantime he has been poked over and over unsuccessfully and is miserable so I won't be responsible for him having to get an I.V. because I didn't feed him enough.]
First attempt with cereal.
It's also important to note that Will is at the bottom of the growth chart. This is expected since he weighed 2 lbs when he was born, but going long periods of time with small amounts of food just isn't a good idea. [The growth chart is the thing that tells you when your child is in the 50th percentile in height, the 75th percentile in head circumference, etc. When you do really poorly on the growth chart you are diagnosed with failure to thrive. Will doesn't have that and we plan to keep it that way.] A baby in Will's situation is at risk for falling off the growth chart altogether. Will isn't in danger of this happening, but his weight gain is only as good as it is because of the amount of calories we put in him every day. If we change that he won't do as well. I am certain that when Will is 2 his size will be at least average, but it just doesn't make sense to not do what we can to help him grow. Withholding food sounds like a good way to get him to eat by himself, but trust me when I say we have seen that it won't work. It would work for you and I, but not for a baby that doesn't understand hunger.
Will had several factors that made it likely that he would develop an oral aversion.
1) Babies with congenital heart defects often have feeding problems.
2) Prolonged nasogastric feeding (his NG tube) - Will has been fed this way for about 6 months out of his 7 month life.
3) Repeated unpleasant mouth experiences - tape being torn off the skin on his cheeks (ouch!), being intubated with the ventilator tube, gloved fingers checking out his mouth, etc.
4) Reflux - I swallow, food goes in, because of reflux it comes back up my esophagus and burns...I may be little but I know how to make that stop...I just won't swallow again.
More info on his feeding to come soon.
Note to self:
don't try to feed the baby and take pictures at the same time
Dog update: As of two weeks ago Katie is now officially jealous of Will. She is demanding that we pet her constantly. She is shamelessly crawling into the laps of strangers requiring that they pet her. But conversely instead of ignoring him like she has all the time, she is actually showing some interest in him. She will snuggle up next to me while he is in my lap. I think when he kicks his foot and it brushes against the fur on her back she feels that suffices as him petting her.
Katie decided the Boppy pillow was the perfect napping spot!
