I combined Thursday and Friday into next update I sent out on Saturday:
Julie continues to improve. As of Thursday night, her weight was 4 lbs 10 oz. She has lost over half of the excess fluid in just 60 hours. Her chest and stomach are now well defined as are her facial features. The only place she still has significant fluids is her neck and head. Those areas of fluid are more stubborn since she can’t move her head because of the breathing machine.
The staff continues reducing the settings on her breathing machine and increasing her food intake. She is up to 12 cc of food every 3 hours. She started at 3 cc. Once she reaches 32 cc per feeding, she will no longer need additional IV fluids.
Sarah was released from the hospital on Thursday and has been resting at home. Her main job is to “cook” for Julie. She started with just a couple drops on Tuesday. By Friday, she produced over 80 cc. At this rate, she should start providing all of Julie’s nutrition sometime this weekend.
I’ve been making the milk run for the past couple of nights. I’m able to put my hands in the incubator and touch Julie. Sometimes she is calm and sometimes she is feisty. She opened her eyes for me for a long time this evening. I put in a full day at work for the first time in 3 weeks. I hope to focus on my seminary studies this weekend.
We received two meals today from friends inside and outside of our church. We have leftovers for the weekend. We are feeling loved, cared and blessed.
With both Sarah and I at home I started to feel more at ease. I actually went to work and completed a full day.
Sarah’s doctor put her on strict bed rest until the end of the month. We rented a pump from the hospital which I setup in the master bedroom. Sarah didn’t make it to the hospital every day, but continued to faithfully sit with the pump.
Since Julie’s condition continued to improve and the prognosis for CCAM usually doesn’t require surgery, we felt that she had turned the corner and might be free of the breathing machine soon.
Sarah and I touched Julie for the first time. We put our hands on top of her head and under the bottom of her feet applying some soft pressure so Julie can feel something solid around her. Otherwise, she feels like she is floating in space. The boundaries game gives her security while we softly talk to her.
They also have a tiny blood pressure cuff wrapped around one of Julie’s arms or legs. Finally, there is the blood oxygen sensor which clamps over a finger or big toe. The nurses change the position of the sensors along with the other devices on a regular routine.
Julie fed through a tube insert into her mouth and down her throat to her stomach. You can see the bottom of the syringe at the top of the picture (above).