We crossed into a new month with diminished optimism. Despite Julie’s progress, we seem no closer to going home that when we began in March. We never thought Julie would take so long to recover. Of course, she made good progress, but the doctors still couldn’t give us a date when we could leave.
Julie has greatly progressed over the past week, but we’ve had some “excitement” too.
Julie graduated again from the ventilator to the bubbly CPAP machine last Friday. The staff has been able to reduce the settings on the CPAP machine from 7 to 5 and completely turned off the oxygen. She has never been on the CPAP this long without problems and never had these low settings before! Her respiration is showing more steady breathing and less of the sporadic, irregular patterns she has had since birth. She is especially relaxed while being held.
The X-rays last week indicated that her lungs were fully inflated for the first time in her life. Her lungs are clear of mucus although she still gets her “beatings” every six hours to loosen any junk before it can collect. Sarah and I watched another session Sunday night and she was so funny how much she enjoyed it. She is coughing, sneezing, crying and talking to us which demonstrates that she has plenty of puff.
The theme for this week has been pulling out the tubes. Julie showed off for us Thursday night by breaking the strap which was holding her ventilator and feeding tubes in place. There was some excitement as Sarah collected the nurses to re-intubate her. Suddenly she was the most popular baby on the floor. We had just finished our CPR class and Julie must have wanted a show-and-tell. Sarah says Julie smiled after spitting out her tubes.
Julie has managed to pull out her feeding tube at least other five times. Of course, she never pulls it out during feeding – she’s not dumb!
She survived losing her ventilator tubes with minimal breathing problems. She was off the CPAP for 5 minutes while the staff changed the mask and straps (which she had shredded). She can breath on her own for these short periods, but still isn’t quite ready to go it alone.
Her weight is hovering just below 7 lbs. There are no signs of fluids and other complications. She doesn’t have any IVs or other tubes in her. Her incisions continue to heal nicely. She now only gets a blood test twice a week (she was getting these hourly when she was born).
Sarah has been able to hold Julie most days this week. I held her for a couple of sessions, too. It’s comforting for all concerned. We brought her a music box last night for her to enjoy.
It’s the last week of the semester for me and I’m behind on most of my assignments. I took
yesterday off work because I was exhausted. Sarah has been hit hard the last couple of days, too.
Please pray that Julie will be able to get off all the breathing machines.
Andy and Sarah Horn
Julie really likes her mama and papa time. She responds well and that helps her adjustment to the CPAP machine. The nurses still haven’t really gotten the mask to fit comfortably so Julie continues her ongoing struggle to break free.
When Julie broke the strap holding the ventilator tubes in place, six nurses from all over the NICU descended on our room. They had us leave while they reinserted the tubes into Julie. Although out of sight, we still heard Julie complain vigorously about the six-to-one odds and the replacement tubing.
The next day we learned that the doctor had recommended conversion to CPAP if Julie pulled the tube out one more time. Unfortunately, we didn’t know and the nurses must have forgotten in the heat of the moment. Of course, getting a CPAP prepped and ready to go would have taken longer than they felt comfortable letting Julie breath on her own, anyway, so we didn’t say anything. The morning crew made the conversion the next day when things had calmed down.