Monday, August 8 -- Day of Surgery

At 3:30 a.m. I snapped. Justin held me while I cried. Then I pumped while we talked, and we chased and swatted the obnoxious mosquitos that kept buzzing us, and then laughed about our wild August nights. I couldn't stand knowing that I would not get to hold her for two weeks or see her sweet smile. I would have gone up before bedtime after the nurses changed but was already a zombie, so had opted for sleep. But now I was wide awake, it was 4:30 a.m., and we debated going up to have a visit with her before her surgery. By the time we had gotten there, it would have been almost 6am, and shift change from 6:30 to 7:30 is when all the parents are kicked out for an hour. I said we could do that and have breakfast out together, or get a couple more hours of sleep. My heart wanted her, but my body begged for more sleep, so we slept until what was supposed to be six and wound up being seven thirty. We were on the road by 7:45. Our appointment was at ten, so it was fine. Then halfway through the morning rush traffic, we got a call from Ann Camp-- Dr Downey had finished his morning appointment early and was ready to bring her back, and how close were we? I swallowed and asked her to give Audrey an extra love from me, and reminded her to give surgery our cell numbers. We grabbed some breakfast at a cafe we'd been wanting to check out, and along with his eggs Justin bought a miniature chocolate turtle bundt cake topped with caramel sauce and candied pecans, that redefined melt-in-your-mouth. Having teased him about having chocolate for breakfast, I learned my lesson when I discovered that I could hardly chew, the taste was so amazing. Maybe JK Rowling was on to something with the magical properties of chocolate.

We were anxiously awaiting the call from surgery, but knew that cell reception is spotty in the hospital. Our cell phones don't work at all in the parking garage or the first floor, so we hurried upstairs, got scrubbed and briefed by the NICU staff, when suddenly I turned to my husband in horror with the realization that in my hurry to keep my bags simple I had left my phone in my purse out in the car. He went down, and I went in, only to find that of course, in the past ten minutes surgery had been trying urgently to call us. A nurse escorted me down to the surgery waiting room, and as our elevator doors were closing I saw Justin just walking by. The nurse used her intercom to page the front desk to let him know to meet us, and at last we connected on the second floor and went to the waiting area, to learn that after the esophagram, surgery had commenced-- and we had no details.

After four difficult hours, Dr Downey --himself, not a younger assistant as we'd seen the other families in the waiting room receive visits from-- came to our chairs with a tired face, and must have talked with us for twenty minutes. What he initially had wanted to tell us with the phone call was this: there had been no change since the esophagram a month ago, so there was no advantage to waiting further. When he got in there, he found that there was scar tissue from her earlier surgery to contend with, which he had had to cut out before working with the healthy stuff, so in fact the esophagus was even shorter and less flexible. He believes that the scar tissue from the previous surgery was interfering with the lengthening of her esophagus. When they opened her ribs at the best angle to reach things, the rib that had had a hairline fracture from the first surgery, split apart entirely. In an attempt to prevent the unwanted fusing of the bone tissue in the healing process, great care and a lot of time was taken to align that rib in a way that would help it heal the way the surgeon wanted. He said they would be watching it throughout the next few years because it could cause some Scoliosis, and that if that started to happen they could help it by surgically resetting the bone at that point. Because this was Audrey’s second surgery, some technicalities of that meant they had to deflate a lung and work in the lung space. The pull was so tight, that he wasn't sure they could get the ends together, but he was a little surprised and very pleased that when they attempted it, none of the sutures pulled out. Because of this she did not need a gastric pull-up, and we were all relieved because we had been hoping to avoid that. He explained that the repair was very tight and that he would “sandbag” her to keep her head immobilized. She will be paralyzed and heavily sedated for 5 days. Afterwards, she will not be paralyzed and will have the head restraints removed, but will remain sedated for 5 more days. At 10 days they will do a contrast study and xray across the repair site to make sure it doesn’t have any leaks. If there are leaks they will simply keep waiting until the repair is sealed. Because her stomach was pulled unnaturally tight, it will reflux a great deal. He also explained that the proximal pouch (the upper end) is very large and the distal pouch is stretched and narrow, so the two together act a bit like a funnel with food draining down slowly after swallowing. They can stretch (dilate) the esophagus easily as needed at a later date with a balloon similar to an angioplasty, but in the meantime Audrey will learn to adapt to the tiny opening, and although learning to swallow food will be slow going it will be enough for her own saliva. At the end Dr. Downey seemed optimistic about the repair. He noted what a strong baby she is-- they usually have to stop and take breaks to allow the baby's oxygen to catch up, when the baby is functioning with only one lung, but to his amazement that never happened with Audrey. He seemed very tired like one who had finished a long race, and as we warmly thanked him he seemed to drink it in like one who thirsts. Justin wrote these thoughts: "Dr. Downey’s demeanor was similar to someone who has had a spiritual encounter and I wonder if he felt some divine intervention in Audrey’s behalf. He also seemed very warm towards us when we said good-bye. Just before the surgery Susie posted the information in her Facebook page and many of our family members and close friends stopped what they were doing to pray for her.  Justin's Uncle Bob and Aunt Brooke pulled over to the side of the road to pray, Carolyn Rowberry interrupted breakfast to pray as a family. We feel that these prayers were the reason Audrey had such a successfully surgery.

We hung out by her bedside as soon as they allowed us in the room, but she was surrounded by a flurry of activity, nurses rushing to get her medications sorted out and fixing her picc line. We were told in no uncertain terms to stay back and out of the way. Her form was white and still, looking strange and huge sprawled out on the warmer bassinette usually reserved for newborns, and I watched as she trembled and fought the paralyzing medication and tried to breathe over the machine that was supposed to inflate her lungs for her. Kiley our OT stopped by and gave me a hug, and I shared with her the news about our new challenge with the blood sugar. She hugged me again and whispered that she was praying for us. Justin finally said he needed to leave, this was too stressful to watch, so he said a sweet good-bye, I kissed her little knee, and we left together. Since then they have increased her meds to where she is comfortable and relaxed, and she will receive a small blood transfusion. But.... one hurdle down. When we got home we were so exhausted, but our kids convinced us to take them to the water park for the last hour of the day, and we all had a lot of fun, came home to a warm dinner prepared by a friend, and slept like rocks.