The hardest thing we've ever done

Our sweet Emma inherited a condition called VUR (vesicoureteral reflux), otherwise known as bladder reflux. Her urine backs up into her kidneys, which can cause lots of problems if left untreated. We first discovered she had VUR when she had her third UTI at around 10 months old. Her pediatrician recommended we have Emma tested because children shouldn't have that many UTIs at such a young age. The test involves inserting a catheter, filling the bladder up with dye, and then taking X-rays while the child urinates. Sound horrific? It is. The test uncovered stage 3 VUR on the right side and a bifurcated ureter, in other words she has two ureters on the right side when she should have one.

We met with the head of pediatric urology at Riley Children's Hospital who explained that most children outgrow VUR by the age of 5; although, those with two ureters are less likely to do so. The recommended course of action was to treat Emma medically, which meant giving her daily antibiotics to prevent the recurrence of another UTI. So, for three years we fought her every day to take her medicine and underwent the trauma of the horrible test annually. Finally, in August of this year we learned that once again there had been no change in Emma's condition. We could continue treating her medically, retest her again next year, and see if another year made a difference or we could move on to surgery. The urologist did not believe Emma's chances of outgrowing the VUR were likely, so we made the hard decision to operate.

Silly Emma, the day before surgery

We had about 2 1/2 months to stew about the upcoming surgery, which was scheduled for November 4, Election Day. Unfortunately, we had very little information about what to expect, which left much to the imagination. One of the hardest things was that the hospital doesn't notify you of your surgery time until the day before you're scheduled, making it very hard to plan. We also applied for the Ronald McDonald House but were told that we wouldn't know if we were in until the day of surgery. A nurse called us at 4:30pm on November 3 to give us instructions. She said were to report to the hospital at 2:30pm for surgery at 4pm and no food after 10am. I asked why she was scheduled so late considering her young age to which the nurse replied that there were four babies 6 months or younger ahead of Emma--she was one of the "older" ones. Incredible. But at least now we knew what we could expect. Or so we thought.

The day of surgery began pretty normally, with Emma allowed to eat a light breakfast of a bowl of cheerios and a slice of toast. We left Bloomington for Indy soon after that without either parent having a chance to actually get a bite to eat ourselves. Not good. Chris and I were determined to not eat lunch until after she went in for surgery. I mean, how could we eat knowing she was hungry. We arrived in Indy and checked into our hotel The Crowne Plaza, which Chris had Hotwired the night before for a really good price. After settling in, we left for the hospital. Emma was really sad that she wouldn't get to stay in the nice hotel. We reported to the Main Day Surgery area at 2:30pm after leaving Nanny and Charlotte in the surgery waiting area. The first words out of the nurse's mouth were, "She's carrying a sippy." Apparently, we were supposed to cut off any liquids three hours before surgery, but the nurse who gave me instructions the night before had said nothing about limiting liquids. I was really upset because this could mean pushing Emma's surgery back to make sure they met the 3 hour span. She was already so hungry; I couldn't imagine her waiting longer. Little did I know how long she would actually have to wait.

Everything was going pretty smoothly besides the water thing. They put us in a little room with two chairs, some equipment, and a TV.They checked Emma's vitals and put her in a little pair of scrubs. We asked if Lori was on duty. Lori's sister is a friend of ours and had given me her name. She came to meet us and also gave us the bad news that the OR was backed up. It was looking like Emma might not go back until 6:30pm. Ughh! Emma had become obsessed with a DVD the hospital had sent called, "Getting Ready for Your Operation" and was watching it when Lori came by. She asked Emma if she'd like to meet one of the stars of the video. A few minutes later another nurse came by who played the mother in the video. She confirmed that we were probably going to have to wait until 6:30pm at the earliest because of a complication the surgeons had run into with another patient. She said that we could get a pager, though, so that we could leave the little cubby they'd put us in. So, that's what we did.

Elissa and Charlotte helping keep Emma's mind off being hungry

We went to find Nanny and Charlotte in the waiting room. We also found our pastor, Tim Bayly, who'd come to be with us and our friends, the Chasteens, who'd also driven up. All of them had arrived in time for the 4pm surgery. I felt really bad that they'd come all this way and we were delayed. Tim offered to stay with Mom and the girls so Chris and I could get something to eat. Chris thought we should probably eat so that our heads would be clear if any decisions needed to be made. It was really awful to eat, knowing that my daughter was hungry and unable to have anything. Soon, though, we were paged back to the surgery area. We were very hopeful that this meant she was going back for surgery. Unfortunately, it was merely the anesthesiologist's assistant who needed to talk to us about what would happen before, during, and after the surgery. We were very disappointed. While we were there, however, I received a call from the Ronald McDonald House that we had a room. Great! Except that we'd already booked a non-refundable room through Hotwire AND checked in already. No problem. Tim said he'd take care of everything. He got on the phone with the hotel, with Hotwire, and with the insurance company that I'd bought travel insurance from. He was able to get our things out of the hotel and moved to the RMH without our lifting one finger. What a blessing! We would have to file a claim with the insurance to get our money back. While Tim was working behind the scenes, we were impatiently waiting for Emma's surgery to even begin. Finally, around 7:30pm we were paged. It was time.


Dr. Rink came to talk to us about what would happen and the anesthesiologist gave Emma "goofy juice." Imagine giving your 3-year old a shot of vodka. Her speech slowed, she got limp, and she got funny. One of the things she said was, "Are you my mommy?" "Yes," I assured her, "I'm your mommy and I love you." She asked Chris, "Am I wearing panties?" She'd realized that her panties had been removed way back in the beginning of our day at Riley when she'd put her mini-scrubs on. We laughed. She laughed. Tim and another dear friend, Amanda, came back to see us and pray with us. When the nurses came to get Emma from us, she was completely unaware that her worst fear, leaving without Mommy and Daddy, was being realized. We stood and Tim took a moment to pray over Emma. And then, she peed...all over me...a lot. Poor baby, that was why she was concerned about her panties. She had no idea she'd done it--she would have been mortified. The nurse gave me a towel to wrap her up in and I layed her in the little wagon all wet. She had her princess pillow and Little Bear. The nurse pulled her away from us and I melted. What we'd been waiting all day for had finally happened and I wanted it back. I wanted a few more minutes with her to tell her I love her and kiss her one more time.

Amanda literally gave me the sweater off her back so I didn't have to wait for hours in a urine soaked shirt. She hugged me and cried with me. It meant so much to us to have mom and friends (6 adults and 8 kids) with us while we waited. And waiting is what we did. For hours. At 9pm, the OR called to say they'd just started the surgery. What? She'd been back there since 8pm. That means we still have 2 or 3 more hours to wait. At 11:30pm, the surgeons came to tell us all had gone well and Emma was recovering nicely. Our friends with all of their tired children (Charlotte was the only little one who'd managed to fall asleep in the waiting area) left to drive back to Bloomington. We still had to wait until recovery called to say we could come to Emma. They finally called and I could hear my sweet girl crying. Awful. We literally ran to her side.

She was the absolute last child left in the recovery room. The nurse said I could hold her, so I eased her into my lap, careful to not disturb her IV, catheter, and monitors. She was pretty upset and in considerable pain. I was able to hold her all the way to her room, and they let me get into bed with her when she refused to be separated from me. Chris left to let Mom know we were settled and to help her get to the RMH. He came back a little while later to let me know they were just going to sleep in the waiting room since Charlotte was sleeping soundly in her stroller and they weren't really sure where the house was. Emma slept fitfully in my arms. The spinal block that was supposed to give her good relief didn't seem to have worked very well. I slept little. Early the next morning Chris returned, so I could go to Mom and nurse Charlotte.

I took them to the Ronald McDonald House. It was so nice. Just a couple of blocks from the hospital, a Select Comfort bed, and a semi-private bath. It had a nice play area for Charlotte and felt like a home. We are so grateful to everyone there who made it possible for Mom and Charlotte to have a nice place to stay. I wasn't gone long before Chris called to say Emma was really upset and needed me. I hurried back to her side and spent a long day trying to keep her comfortable. The main priority of the staff at Riley is to keep the children as comfortable as possible and they did a great job. We were sharing a room with a little girl a few years older than Emma who was going home that day. It was comforting to see how well she was doing. The mom said, "Every day gets a little better." We were ready for tomorrow. Late in the day, Emma felt well enough to ride in the wagon to see Charlotte downstairs. Everything was going well, until her nose started to bleed. She went hysterical. We rushed back to her room. Blood everywhere. She had two more before we left the hospital. Not fun.

Still puffy but able to play with Charlotte in the Child Life Room on her floor

The next day was better and we were allowed to leave. The week to come was really rough. Emma had bladder spasms that caused her to scream and writhe in pain. She had to potty every five minutes. Sometimes, she'd need to go again while we were still washing our hands. She wanted to know why she hurt so badly. She asked us to pray for her. All we could do was cry out to God. I prayed to bear the pain myself. It was the worst experience in my life to witness my daughter's pain and to be unable to do a thing about it. We felt utterly helpless but not alone. We knew that God had also watched a child suffer; and though He was not helpless, He chose to allow the suffering for our sake. There is a purpose for suffering. It shows us a glimpse of how much our Lord loves us. Emma will also be able to empathize with others who suffer and can offer them hope. I thank God for bringing us through the surgery and recovery, for all the friends who visited, prayed, and cooked us food, for my mom being able to be here, and for the opportunity to trust God with a most precious child.

Enjoying time with Nanny

Postscript: We met with the urologist on December 12 and everything looks good. Her follow-up kidney ultrasound was normal and she's healed nicely. Unfortunately, we discovered Emma has a UTI on December 20, after she started running a high fever and complaining of pain when going to the potty. We're not sure what it means. Is it because of the trauma of the recent surgery or does it mean the surgery was not successful? I'll be calling the urologist on Monday.