"My Story…" Monday: Surgery and Unfamiliar Ground


When we found out that C. would have to be transported to Chicago for surgery, everything moved so very fast. We had very little time to think about much other than the sheer logistics of how we were going to manage the trip. Once we were actually on the road, we had a chance to think about the fact that we had no idea exactly where this hospital was, what it was like, if we would like the doctors, or even where we’d be staying. Like so many times before, we just had to trust that things would fall into place.

Arriving at the Chicago hospital was a touch overwhelming. While it’s true that our daughter had been cared for at a children’s hospital right in the heart of Indianapolis, it was a much different setting. There, we walked amid college students and residents on wide sidewalks through grassy areas. In Chicago, we were right in the heart of a busy city block. Traffic, both pedestrian and vehicular, was staggering and the lobby of the hospital was crowded and incredibly noisy. We waited our turn to speak to the individual at the information desk, received visitor passes, and got directions to the NICU. When we arrived there, we found out we had beaten our daughter. But only by minutes.

That first day was basically a “settling in” day. We got to know the nurses in the NICU a little bit. They seemed “tougher” than the nurses we were accustomed to, but very knowlegable and competent. We met Dr. Shapiro who would be performing C’s surgery bright and early the next morning. We talked to a supervisor who gave us directions to the apartment we would be staying at. This was a fairly new project of the hospital’s… they had taken over an apartment in a building several blocks away and would rent it by the night to out-of-town families with a child at the hospital. It was a great idea because the Chicago Ronald McDonald House was a long ways away and hotel rooms were expensive in the area.

I’d love to tell you that everything was peachy keen with this apartment. Unfortuately, the best that can be said is that it was clear someone had tried very hard to put up a coat of fresh paint, leave clean linens, and fresh soap. The effort was there. The building, however, was very old and in rough shape. And so… the hallway had a lingering, nausea-inducing smell to it, the heat ran incessantly forcing us to open windows during a Midwest winter, and, most disturbing of all, we arrived home one evening to find my freshly washed breast pump components crawling with roaches. Yeah…

But, anyway, what mattered most was not where we were sleeping at night, but the care that our little girl received. Dr. Shapiro had shared these statistics with us… without surgery, there was an 85% chance our daughter would go blind and a 15% chance she would retain some kind of vision through correction. With surgery, the statistics flip-flopped and she was down to a 15% chance of going completely blind with an 85% chance that she would have some vision. There was no doubt we were doing the right thing…

We returned to the hospital at 5:45 am on Thursday morning and met with her surgeon. We sat with mega-sized cups of coffee in the waiting room. And just waited. We didn’t talk much. There wasn’t too much to say. We just waited for Dr. Shapiro to come back and tell us how it went.

He came back just before 10 am to tell us that things had gone well. He ended up having to do two different procedures on each retina in order to attempt to resolve and halt the detachment. That had been the “worst case scenario” but now, hearing that it went well, it didn’t seem scary. We were able to head back to the NICU and await C’s return to start her recovery.

Our little girl had bandages over both eyes and was still sedated. She had also been re-intubated. When you’ve had a preemie on a ventilator for so very long before and it was such a huge battle to come off of it, it’s very scary to see that tube in place again. All sorts of fears roll through your mind… you become terrifed that your child won’t be able to get off the machine again, that you’ve started over on that horrible roller coaster ride. It doesn’t matter that you know it’s standard procedure for surgery under general anesthesia, it still leaves a sick feeling in your belly…

As it grew later and later on Thursday, we grew increasingly agitated that no attempt had been made to remove the ventilator tube though C. was receiving almost no oxygen or pressure through it. My husband questioned the resident on rotation and he said that the fellow had ordered that it remain. We essentially clawed our way up the food chain until someone finally called the neonatologist on call and they got the go-ahead to removed the tube. And, when they did, little C. breathed like a champ. No problems.

Our next mission was to try and get C. transferred back to Indianapolis the next day so we didn’t have to stay over the weekend. We certainly didn’t want to take chances if she was still in any danger but, as long as she was stable enough, it seemed best to get back to our “old stompin’ grounds”. Dr. Shapiro saw no reason for her to remain in Chicago and signed the release to get her back to her usual caregivers.

Friday morning, we met the transport team by C’s bedside and this is what they said:

“We’ll see you back at IU Medical Center.”

WHAT?!?!?!

Our daughter had been at Riley! We loved Riley! We knew everyone at Riley! We must have looked completely panicked because the ambulance driver actually called Riley and talked to Dr. Lemons, the head neonatologist (and a man I absolutely adore). He checked, double-checked, and triple-checked and sadly told us that they were over-full. C. was healthy enough for IU’s Special Care Nursery. And so, off we went to yet another new place…

But it was with great optimism that we left Chicago. Our baby girl’s retinal surgery looked like it had been a success. We were going to pick our son back up. We now knew our daughter was one of the “healthier ones” because those are the only babies who can leave Riley…

We headed back to Indy.

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Next week, I’ll tell you a little bit about what it’s like to have a child with MRSA (hint: it’s nothing like those crazy “super bug” scare stories you read and hear…)

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