Later updates Aaron update 150
The NICU Experience
Later Updates
Subject: Aaron update 150
Date: Wednesday, October 13, 2004 8:46 PM
From: Kevin Quick
To: Aaron Update List

Whew, it's been a heck of a month since our last update. But today was a good day.

We had been scheduled for a consultation with a pediatric surgeon, in preparation for Aaron's g-tube installation surgery, this past Monday. However, the closer we got to the consultation date, the more unsettled Kathleen and I became. Our gastroenterologist had strongly recommended the g-tube, but Kathleen and my guts kept saying, "Something's not right with this." The past two weeks especially have been miserable for us.

Last Friday, we decided to delay our appointment with the surgeon. We needed more time to think the g-tube option through and to sort out what was really eating at us. We made an appointment for a second opinion with neonatologist/pediatrician Dr. Rick Anaka in Santa Rosa.

Saturday, we discovered an Internet bulletin board for preemie parents, and posed the question to the members of the board: "Should we go with a g-tube?" We received responses from several mothers of early preemies, and the consensus was, "No."

Monday, in preparation for our visit with Dr. Anaka, we received copies of Aaron's medical records by fax. Unfortunately, what was contained in them just floored Kathleen and me. There were a number of very uncomplimentary personal remarks about us in these reports, which had been circulated between our pulmonologist and gastroenterologist. This made us feel sick, helpless and worried. The reports made it evident to us that our doctors don't have much respect for Kathleen or me as parents, and we now understand a little bit more why we had always felt so beat up after visiting with them in their offices.

But today was a good day. A very good day...

We met with Dr. Anaka and had a very, very good visit. He spent about an hour with us, and it would take too many words to go into all the technical details. Bottom line: His assessment agreed with what our hearts and minds had been shouting at us for the past month:

Yes, Aaron is small, and yes, he is growing slowly. However, what good would a g-tube do? If his main problem is slow stomach emptying, which is what our gastroenterologist and the gastric tests done at CPMC last summer suggest, then a g-tube would be a very poor choice of solutions to the problem. A g-tube would not help the stomach emptying problem. It would only do what our oral feeding is doing now: it would fill the stomach to capacity. Since we already regularly fill Aaron's stomach to capacity (just short of vomiting most of the time, and past that point once a day or so), what good would it do to add more food directly into the stomach via a tube? Dr. Anaka suggested that if slow stomach emptying is the problem, then the device that we should be considering, if any, is a j-tube. A j-tube bypasses the stomach entirely.

Again, there are too many details to mention here, but overall, Dr. Anaka thinks that Aaron looks quite normal, healthy and vibrant. He did not see any immediate need to deviate from our present non-invasive course.

There is one major unresolved question that Dr. Anaka will be asking a GI friend of his for us: At Aaron's stage of development, is there really only a short window of opportunity (time) within which he needs to exhibit substantial growth, as suggested by our GI at our last visit, beyond which, if this growth does not occur, Aaron's body and brain development will be permanently stunted? It was Dr. Anaka's opinion that there is no such window. He believes that as long as Aaron's daily caloric intake does not dip down into a dangerously low range (i.e. 70 cal./kg of body weight per day or less; Aaron's been in the 95 to 100 range for the past year), Aaron will grow at his own pace, and that his catch-up growth could occur any time between now and 20 years of age. We'll be eagerly awaiting word from Dr. Anaka's GI friend on this. (One interesting point along these lines: Dr. Anaka pointed out to us that on the head circumference chart, the curve flattens out to nearly horizontal at 2 years of age. Therefore, regardless of the number of calories that Aaron takes in over the next couple of years, his brain size is not going to increase substantially; that "window of opportunity" has already closed!)

We came away from our visit with Dr. Anaka today feeling more relaxed, relieved and at peace than we have in quite a few weeks. We've already decided that we would like Dr. Anaka to be Aaron's primary doctor. He is knowledgeable in neonatology (preemies) and pediatrics, and he's smart, analytical, thorough and empathetic.

Thank you, everyone, for your patience with us as we continue to do our best to navigate these (for us, anyway) uncharted waters. Things are looking up.

Love, Kevin, Kathleen, Aaron and Robin