A sense of normalcy

During all the drama that surrounded Kate's birth and eventual homecoming, there was never a sense of the normalcy we all expected with the birth of our 4th child. We thought I go to the hospital, have a baby girl, come home 3 days later and get on with the business of living. That wasn't to be, and when we did come home, there was absolutely nothing normal about it.

Still, we learned to live in our new "normal". Some days were harder than others. Some days just flew by. All in all, I'd say we did pretty good adjusting to life with a medically fragile child. My sons were princes. They had waited so long for their sister to finally be born...then come home, they were just happy to have her there. They dutifully Purelled their hands, changed their clothes, and stayed away when sick all in the effort to keep her well. But still they managed to treat her as one of them. It was harder in the beginning. She was an infant, so she just laid there, but the added presence of a nurse did have its own problems. Eventually, we insisted that the boys be able to be in her room and "visit" with her. She wasn't just their patient, she was our daughter and their sister. So they played with her, read to her, "fed" her and rocked her. As she got older and stronger the kids reveled in her achievements, applauding her when she finally learned to roll over, crawl and walk. All adored her, but let's be honest...boys are wild, and the wildness didn't take long to rub off on our little girl. Her favorite thing to do ws play rough with them. Of course we couldn't allow this...could we??? I mean, here she was, a "technology dependent" baby with an artificial airway, and a feeding tube. What if the trach got dislodged? What if her feeding tube came out...the mind could go lots of different places, but we chose to just let her be. The boys had been sufficiently cautioned and we knew they'd be careful.

And Kate couldn't have been happier when than when they were wrestling with her on the living room floor.

Eating (Part 2)

Teaching Kate to eat took far more effort than I initially thought. It's a natural thing to want to eat...to need to eat. But for a tube fed infant (and Kate was almost exclusively tube fed from birth) it's a difficult thing to learn and an even more daunting thing to teach. Around the time Kate was 11 mos old, I convinced her pediatrician to let us start weaning from the tube. Again, I could do whatever I liked, but the 16hrs of nursing we had in our house, couldn't. We needed orders to let them refrain from tube feedings during the day. Ped agreed to give it a shot. We took her from tube feeding every 4 hours (6x/day) to tube feeding only overnight (7p, 11p & 3a). It was a big difference for Kate and for all of us...and Kate fought it as best she could. We calculated every single ml she took in, to make sure she didn't dehydrate herself in the process of learning what hunger is like, and bumped her formula from a normal 20cal/oz to 27cal/oz. But she fought a good fight. By early September, I was thinking it was never going to happen. She ate, but she didn't take in nearly enough quantities to keep herself nourished, nevermind enough to grow. I called a feeding clinic and set up an evaluation for that week.

The feeding people were nice, but from the get go, I wasn't overly impressed. They didn't tell me anything I didn't know, or show me anything I wasn't already doing. They agreed she had issues (trouble coordinating her swallow, pocketing food, spitting food out) but said she wasn't nearly as bad off as some. She had no issues with textures, tastes or temperatures. The therapist they set us up with at first was awful. She was a nice girl, but she clearly had no real hands on experience, nevermind with a case as medically complex as Kate. I asked for a change of therapists, got a supervisor and at her first visit with Kate, she diagnosed dysphagia (an inability to swallow properly). Kate's issues were weakness in her mouth and jaw muscles, and a tendency to get tired and spit food out. She recommended a therapy called VitalStim. Essentially, they put electrodes on her cheeks to stimulate her muscles to contract and work properly. The rub is, she must be eating while the electrodes are on. Kate had VitalStim for 6 weeks, 2 times a week. She was having good results, but her palate repair in early December required us to stop the therapy while she recovered. We made plans to contact the therapist right before Christmas.

Unfortunately, Kate went on a severe hunger strike following her repair. She refused all food and most drink for 3 weeks post repair. I was twitching in the corner, thinking about all the progress she'd made and how far she was regressing with each passing day. I even offered her bottles, which she had been taking up to the night before the surgery with limited success...no dice. Christmas Day she ate a total of 5 olives and some water all day. Keep in mind, we tube fed her around the clock in order to avoid dehydration and loss of weight. December 26, Kate decided she'd had enough and ate an entire hot dog in 15 minutes...as if she'd been eating fine her entire life. She never went back to Vital Stim. She continued to improve and was discharged from the clinic in February 2008. We'd successfully weaned her from 6 tube feedings a day, to 1 tube feeding at 7p everynight. By this point it was Pediasure (30cal/oz) with Duocal. Even with only 1 tube feeding, she was gaining weight, and if her airway reconstruction wasn't looming on the horizon...we'd have pulled the tube and gone for full weaning right then and there.

Fortunately for us, we didn't because that spring was hard on Kate in similar ways to the previous year.

Here's Kate learning to use her Passy Muir Valve in July 2007: