Despite being on the ventilator, Julie experienced several firsts in this update…
It’s been 4 weeks since Julie’s birthday. We had a good talk with the doctor on Sunday. Julie was awake and alert. It was a much better visit than Saturday.
Julie’s weight is still a concern, but the doctor agreed that her weight might be increasing but we can’t see it since we are still removing residual fluids. He increased the calories in her feeding to help her add some weight.
We also learned that the upper part of her right lung was collapsed and filled with mucus. They use a vibrating device to loosen the mucus by lightly tapping Julie’s chest and back. She was on her left side Sunday to help move this stuff out of the way. This crud is at least partially why she was unable to continue on the CPAP and SiPAP machines. Otherwise, we are waiting as Julie grows and the lung tissues mature. Her diaphragm is another source of concern, but we won’t know for sure until she is completely off the machines. If there is a problem, it might delay things, but it shouldn’t be critical.
While we were at the hospital on Sunday, Julie started showing signs of breathing trouble. The nurses investigated and removed some of this icky stuff from Julie’s lungs. The difference in her response before and after was remarkable. This scene repeats itself every few hours.
Getting Julie ready for a crib is not as high on the priority list due to the ventilator tubing. So, she will stay in the baby box for now. She was on her tummy for the first time in her life Monday. She was intensely studying the linens. Sarah says she looks perfect without any excess fluids or swelling. Her incision and all three belly-buttons (two innys and one outy) continue to heal.

The best news was Monday when Sarah was allowed to hold Julie for the first time in four weeks. The session lasted two hours. Sarah gets situated on a recliner first and then the nurses move Julie out of the baby box and onto Sarah’s chest (skin to skin). They have to move quickly since they remove Julie from the ventilator during the move. Sarah then has to remain still because of the breathing & feeding tubes and monitoring wires. She was given a hand mirror so she could see Julie’s face easier.
The doctor came by after a while and everyone was completely calm. Julie appreciated the experience and Sarah – well you can only imagine.
Andy & Sarah Horn