Totally Tubular

Everybody has their limit, and now I know what mine is. It's not shoving a tube down my 3-month-old daughter's nose so that she could be fed. It's not giving her daily shots in alternating thighs with a 21 gauge (big) needle (who would have thought all those years of giving calf shots would "pay off"). As geologists neither of us imagined ever having to do these things, to our child, or to anyone.





My limit, apparently, was dealing with Jordan's PEG tube when it was first placed on 17 April 2006. It's pretty strange to see your child perforated in such a way, but such a relief to have the tube out of her nose, and a miracle to watch her finally chub up! However, after we left the hospital the next day, we had to care for the tube site until it healed open. This is similar to caring for newly pierced ears, and when I went to wipe it up and turn it, I got queasy and weak in the knees, a feeling I had never experienced before! It was strange and bothersome, and at that point Devon had to take over PEG cleaning for the first week while it healed and I got used to it.

Luckily I got over it. Soon the stoma was basically healed, the PEG turned freely and easily, and I was able to overcome my aversion to it. Just in time, too, because granulation tissue became the next hurdle. That's tissue growing like crazy trying to mend the hole in her tummy, but unable to do so. Devon and I had to cauterize it daily for about 5 or 6 weeks, which was a delicate process in itself (trying not to cauterize the surrounding good tissue). Some attempts were better than others. Finally the site is happy & healthy, and sporting a hip new Mic-Key button.

Jordan was never a good eater, and by mid-March she was no longer able to gain weight by breastfeeding. Sadly, but with some relief as well, we switched to bottle feeding, and I developed a very intimate relationship with my electric breast pump. But the bottle didn't work for long, either, and on 1 April Jordan got an NG tube placed in her nose. It's somewhat sad to think of the joy and relief we felt after even just the first feeding (of breastmilk). We were like new people starting that day, as though the weight of the world had been lifted from our shoulders. We re-discovered the world outside of feeding Jordan, which by that time was occupying close to 16 hours a day.

We have learned through all of this that, despite Jordan's well-developed suck (with thumb developed suck-blisters to prove it, still), she just can't swallow right, and she stopped eating to prevent choking and gagging to death. Initally I thought that she had stopped eating because she didn't have the will or interest to go on (what could have happened to her survival instinct? I sobbed), so this news was a huge relief! Our doctor in Seattle even suggested that she has this problem in utero, and that was the cause of my polyhydramnios (excessive amniotic fluid).

The tube does not interfere with eating food orally, and many a person has had their tube removed when they no longer need it. The hole heals closed in 30 minutes to 3 hours, even if you've had a tube for years! This is why we are so happy that she's back to "recreational" breastfeeding. We're trying not to let her lose skills with her mouth, so maybe someday the tube can be removed. Only time will tell.

For now Jordan's "second belly button" is responsible for her zooming up the growth charts (from 25th to 75th percentile), and in fact we may soon have to cut her back to prevent her from becoming too chubby to do her physical therapy exercises!