Eating

You don't have to think about swallowing when you're doing it, you just do it. I would go so far as to say I have never even wondered how the mechanics of eating works. It just does. After Nicholas failed his swallow study and was placed on his NG tube, we had a discussion with the nurse practitioner and the neonatologist about our options.

The first thing they wanted to look at was getting Nicholas working with a speech therapist. We were confused by this - he's a newborn, what could a speech therapist do? Turns out they do a lot. They know how the mouth and tongue and neck muscles work, so they're the best provider to work on feeding issues. He would continue his NG feeding while they tried to work on making it safe to eat. 

The speech therapist was the first person to tell us that his failure to have the right mechanisms to safely eat was probably neurological due to the hydrocephalus. Because of the immense pressure on the brain and the fact that his brain was forced out of the way due to the huge ventricles, there was a very real possibility that the area of the brain that controlled swallowing was either under too much pressure still to function or had been damaged because of the hydrocephalus and had not developed at all or correctly. 

That was a hard realization. Until that point, hydrocephalus had just meant a big head and a brain surgery. We hadn't really considered the fact that there very well may be some brain damage. How can you? 

As speech therapy progressed and some progress was made but not being made very quickly, another option was brought to us. 

Nicholas was not allowed to leave the NICU until he could eat safely. The NICU did not consider eating via NG tube "safe". Certainly it is safe when it is being watched 24/7 by a trained medical professional but they didn't want a baby at home with an NG tube. Plus, the Bradys continued and the nurses suspected it was acid reflux coming up into his airway. An NG tube exasperates that because it allows an opening from the stomach back up the esophagus. Since he was still having Bradys even on an NG tube, it was absolutely not safe to have him home where we couldn't have him on monitors all the time. 

The next best option was to place a g-tube. This was a surgical procedure where a hole would be placed in his stomach and a button would be placed in that hole. We could attach a tube to the button and feed him directly into his stomach via either gravity or a pump. We didn't like the idea of him having to go through surgery again so soon. We felt at a loss. He couldn't go home right now because he couldn't eat safely but the best and fastest option to get him home was to make him have surgery again. It was a difficult place to be in as parents. Do we keep him in the hospital to keep working with the therapists? Or do we make him have surgery again and keep up with therapy as an outpatient so he can hopefully one day have the tube removed?