I had fun writing this update…
It is with mixed emotions that we announce the parting of one of Julie’s closest friends – her ventilator! The ventilator (and her big brother, the oscillator) has been a constant companion for most of Julie’s 5 1/2 week life. Her steady – almost rhythmic – personality helped Julie through times of uncertainty. It’s no understatement to say that the ventilator saved her life. Yet this caused Julie to rely completely on her ventilator friend so that she hardly realized it was holding her down, preventing her from binding with her parents, and keeping her from experiencing the bigger world. As with all relationships when one gets inside another, there were tears at their parting, but Julie is stronger and more mature for the experience and is only now beginning to appreciate the freedom of not having a tube down her throat.
It shouldn’t surprise you to learn that Julie immediately hooked up with a new friend – the CPAP machine. Unlike the ventilator, the CPAP machine has a bubbly personality that causes Julie to blow bubbles constantly, too. Unlike the first time Julie was on the CPAP machine, she is doing much, much better without nearly the amount of struggling that she experienced before.
Julie’s weight is now up to 5 lbs 11 oz. She has been constantly adding weight an oz or two a day for about a week now. I’m fairly confident that this is all good weight without extra fluids.
Julie is still receiving treatments to loosen congestion in her chest. A small device – like an electric toothbrush – is used to gently tap her chest and back. When she was on the ventilator, the tube could be used to remove the icky stuff from her lungs. Julie will have to be able to process this buildup on her own before she can leave the hospital. In the meantime, the staff gives her a “beating” every six hours so she can sleep. Apparently, she falls asleep during the procedure most of the time.
Julie isn’t being swaddled anymore. She gets too warm. So she is enveloped with blankets all around just to keep her increasingly nimble hands away from the feeding tube and CPAP mask.
The CPAP is a test to determine if Julie is ready to breath on her own. If she does well on it
then she might be ready for the next step.
Andy & Sarah Horn
Julie had graduated from the ventilator a couple times before this, but I felt that this time she would never need the thing again. The staff stopped talking about a third surgery for this week, so we hoped we had moved beyond the need for any more procedures.
Julie had certainly moved past any worry about fluid buildup. Her improved heart function meant she could purge excess fluids in the tissues. Her remaining problems lay in her breathing issues. I thought she just had a weakness of the muscles of the chest along with the lack of lung development. Time and patience would resolve these problems. I didn’t understand at the time that she didn’t have the capacity to fully fill her lungs.
A new process had been added to Julie’s routine. Respiratory Therapy (RT) included several steps. The therapist rolled Julie on one side and tapped gently on her back, side and chest. Then the therapist rolled her over and did the same thing on the other side. The tapping loosened any built-up congestion. Without the breathing tubes down her throat, the NICU staff could move Julie more freely. That motion really helped Julie come alive.
The new breathing apparatus also helped make holding Julie easier. So, Sarah and I took advantage of every opportunity to hold her. Sarah had changed Julie for a couple of weeks. Sarah began bathing Julie sometime during this period, too. Since bathing occurred on a regular schedule, we ensured that we showed up at the right time. This made for late nights. Eventually, we added the RT to our routine. After observing the therapists for several nights, we gradually took over RT at night.
One of the respiratory therapists became enamored to Julie. She began buying Julie clothes, accessories, and bling. At first, we welcomed the attention. But eventually it got to be too much.
Actually, all the staff loved Julie. We learned how much from one of the nurses. Other nurses confirmed her story. The nurses came in early in order to have first pick of their favorite patients for the shift. Julie got repeatedly picked early.
Having spent over a month in the NICU placed Julie among the long-timers on the floor. She had a reputation based on her remarkable recovery from the huge tumor. Having a relatively sweet demeanor made her a favorite among the entire staff.