June 22

Justin's brother Luke, who is visiting from California, lent us his wife Melissa who joined us for the day! Their first child had a lot of medical needs when he was born, as well, so she is a total pro and veteran NICU mom herself. Audrey was sleepy today so we had some good time to chat.

Attended the parent lunch and enjoyed a presentation by the music therapist. She is the only one for the whole hospital, imagine that!! So I feel a lot better about her (now 3) missed times when she's said she was coming to Audrey's bedside and it didn't work out. Wow. But she talked about the different ways music is used in the healing process, it was fascinating. And she said that she offers to write a special lullaby for the baby with the help of the siblings and parents. Cool! If she's really that busy, it may never work out, but what a beautiful service she gives. I loved her South African accent and lovely singing voice as she demonstrated her lullaby version of a Rolling Stones song, to prove that babies love the melodies and music they heard in utero.

Dr Black, our surgeon, stopped by very briefly and very unexpectedly. I had been thinking a lot about our upcoming esophagram (the test where they measure her growth)-- since the simple puff of air into her throat was so much less traumatic than the liquid contrast and pressing down with an instrument, as he had previously described planning to do but which had never happened, I asked him whether we could do that again the same way. He had never come to talk to us before, during, or after the June 1 esophagram, nor given us a report about the results-- we had asked repeatedly throughout the day until our nurse finally found out the gap length for us from Radiology. Vanessa Grow, Sawyer's mom, had told me that we got lucky by having the test so simplified. I was hoping we could get away with that again, but whatever possessed me to ask the surgeon directly about it, I'm not sure... just nerves I guess. But the next day I found out that he was changing her esophagram date from July 1 to the 29th so that he could be there for the dilation etc.... I wondered if I had just caused my baby extra pain by asking the question. His answer had been a repeat of his original explanation of what he likes to do, push down on the top pouch to cause gagging and a reflux of the contrast in the stomach, plus to stretch the pouch and see how far down it could go. I got to thinking about this and realized that if the June 1 measurement was unstretched, and they want to do this one stretched, how could we figure out a rate of growth to estimate how much longer it would take to grow her tube? If we want to see how quickly she is growing, wouldn't we want to compare "apples to apples" by getting a second unstretched x ray to compare with the one from June 1? Last time the difference sounded so small unless you realize we were comparing 3.5cm stretched (at birth) to 3.2cm (unstretched) at June 1. Now if we stretch it, it will look like she's grown a huge amount. And more importantly from my perspective, why put Audrey through the trauma of that stretching process if it is unnecessary? Melissa felt like the surgeon kind of blew off my questions.... it's hard to describe, because even though I know he was probably just making a fast rounds, I just felt that frustration creep up again, where his decisions about her care just seemed to change arbitrarily and without warning. I remembered Vanessa's description of her excellent communication level with her own surgeon, Dr. Downey, and again I wondered if we ought to request a change of surgeons. Since our initial assignment to Dr. Black was simply based on the fact he was on call the day Audrey was born, I thought it should be simple to change. But in a cooperative of partner surgeons, I was worried about making waves and wanted to keep good relations with Dr. Black in case we weren't ready to switch after talking with Dr. Downey. I have talked with our social worker and a couple of trusted nurses about these thoughts, several times to get their take on things, and our social worker promised to talk to the right people and get back with me. I had hoped that by doing things that way I could avoid making unnecessary waves. I was wrong.