July 6

The big day, her second esophagram! Audrey's stomach had to be empty because they were putting her under full sedation for the test. So they stopped her feeding pump at 9 that morning in anticipation of her 3:30 appointment, but 3:30 came and went and there was still no call for us to come down. 4:30, 5:30, three hours later and nothing. I was getting worried about her little tummy hurting her, but she bore those extra hours like a champ. (I loved my friend Adrienne's comment on Facebook: "Poor little thing. Get that kid a cheeseburger, STAT!") At 7:45 we went down, and she was wide awake this time for her field trip through the hospital! Dr Downey checked and double checked that all of my questions were answered before they took her back, and my final question was simply, were they planning to change her G tube out for a button? He said, Oh, good idea.... so I was really glad I had asked. The nurses had all been talking like it was part of the plan, but it was not. A "button" G tube is smaller than the kind she had placed at first while her body was getting used to it, and the button (named for its ability to simply be buttoned shut when not in use) makes it so that she can comfortably lay flat on her belly! Anyway, I bought a cheeseburger (Audrey could enjoy it later in her "Mama Juice" as my friend Tamara calls breastmilk) and a bag of chocolate covered gummy bears, went to the waiting room... and it seemed like so fast before he brought in the results! He had humored me and taken a photo of the way things looked before being pushed on with the instruments. Wow, I was amazed at how far apart those pieces really are. It was like, half her chest. Four inches, seriously. Then when they were moved, it was much closer, maybe two vertebrae widths apart. He said that while they can't connect the pieces yet, they probably would be able to in about a month. He said, they wouldn't be touching in a month, but he thought they could do some dissecting to get the tissue to mesh together. Wow, I hadn't realized it was possible to do that, and it didn't sound so great but I really took his word for it. I was excited to think of being only a month away from surgery, but when I talked with Justin he reminded me that we might still choose to wait one more month beyond that, in order to make SURE they could connect the two ends and avoid a tight repair or an unnecessary gastric pull up, the intentional hernia that would be the best way to connect the two ends if it was impossible to do so without it. Anyway, I went back to help Audrey as she was coming out of sedation, and the time flew as we worked with her. Although she did well, there was so much to do to help her get warmed up and re started again-- I mean, they even had her on a breathing machine with a tube down her throat to help her breathe while under the morphine. They bring them up slowly, but it seemed so fast-- she had no Replogle when she came back, so we had to put one together for her and it seemed to take forever. In her half-sleep she began to panic as the saliva built up in her mouth, and at one point she lurched forward in her bed, lifting her little torso six inches off the mattress. I didn't know she could do that! Great abs, baby! By the time we were done, I looked at the clock and it was after 11pm. I don't do late night driving, so opted for a nap in the parent lounge around midnight, and ultimately decided to just sleep as much as I could until it got light outside and go home early in the morning. It worked out well and I was grateful for the pillow and blanket and welcoming attitude of the night nurses whom I'd never met. Another EA mom who knows said to me, "You know your baby is doing really well when you start getting lots of nurses you've never seen before, because they are the float pool," less experienced nurses who are assigned to stable low-maintenance kiddos. Ours did great that night.