Our enthusiasm had faded a little as the days turned into weeks since Julie’s surgery. Now the doctor gave us a little bad news…
Julie has regressed a little since Monday. They’ve had to increase her oxygen level and the doctor said that the carbon dioxide level in her blood is a little high. She was struggling with the CPAP machine a bit again.
She lost some weight – probably just fluid from the diuretics that she continues to receive. She is just under 5 lbs again. It’s possible that we haven’t yet got all the fluid out of her lungs (especially the right lung which was flattened under the tumor until surgery).
The good news is that she is still on the CPAP machine – 4 days and counting. She is tolerating her 42 cc feedings well and had a diaper today to make a parent proud!
Sarah had some bonding time – changing diaper, holding fingers, cleaning Julie’s mouth, and pumping in Julie’s room – at today’s milk run. She changed her diaper without setting off an alarm which is a neat trick.
Please continue to pray for Julie Kristina’s lung function. Pray for strength for Sarah – it’s hard to say good bye at each trip. I was up to 4:30 am working on an assignment for school. I’ll be starting again soon.
Andy & Sarah Horn
The regular blood tests check the carbon dioxide levels in Julie’s blood. Her levels began to increase for a couple of tests indicating that she was losing the battle against the CPAP machine. So, the doctors made the decision to back off some of Julie’s previous progress. Although the NICU staff warned us that Julie might regress before she got better, this minor setback hit us hard.
Julie’s unexplained weight loss also caught us off guard. She shouldn’t have lost weight at this point. The fluid in the lungs was just a theory. Frankly, the doctors didn’t know and were guessing. We learned that Julie’s right lung had been collapsed by the tumor and so probably wasn’t fully developed yet. Once the tumor was removed, the lung had more room to expand. As it expanded, it might have absorbed the surrounding fluid. Since Julie was breathing through machines, it was difficult to discern how much each lung was functioning.
Julie’s produced the first really huge diaper we had seen from her. This indicated that her GI track continues to function unimpeded by the heart/lung problems.
Although I had kept up with school assignments, they were taking more and more of my time. Each round trip to the hospital cost 90 minutes of driving time. Sarah delighted in caring for Julie during our visits to the hospital, but I found I couldn’t get anything accomplished during these trips. So, we balanced fatigue and school work against spending more time with Julie.