Everybody Comes Home Sooner or Later

Okay, this is the most overdue update of them all. It's been just over two months since the last update, and lots of stuff has happened since then.

First the big news: CHLOE IS HOME.

Now for the chronological story:

Owen is doing great. He now weighs nearly twelve pounds, which is not only excellent for a preemie with an adjusted age of two months, but it's actually about normal for a full-term five month old. So Owen is competing with the regular kids, on their own turf. Good job, Owen.

On the other hand, he's still on oxygen (much to his parents' dismay). For the most part, he's breathing regular room-air, but he's still getting a teeny-tiny trickle of oxygen (one eighth of a liter per minute) through a little plastic tube under his nose (a nasal cannula). Three weeks ago, we did an overnight test to see how well his body was absorbing the oxygen. To perform the test, we attached a little sensor to his foot. This is the same sensor that he had in the hospital (see pictures). It's also the same type of sensor that adults wear on their index fingers when they go to the emergency room, and it has a little red light in it that makes you look like E.T. But I digress. Ideally, his blood should be about 92% saturated with oxygen. To pass the test, he had to have this level of saturation for 75% of the time. Unfortunately, he was only above 92% saturation for 70% of the time. He barely barely barely failed the test.

So the pediatrician scheduled a repeat test for two weeks later. When it came time for the re-test, Owen failed it abysmally. His oxygen saturation score was only above 92% for 15% of the night. ...Sigh... Why had he done so poorly? By this time, Chloe had come home, and the two of them sleep in the same crib at night, pestering each other incessantly all night long. Sometimes Owen swings his arms around, bashing Chloe in the face. Sometimes Chloe yelps out, making Owen slip a little bit out of his deep, restful sleep. Apparently, Chloe can be blamed for Owen's pathetic test score. So he'll still be on oxygen for at least another two weeks, when he's scheduled for another re-test.

Like I said, Chloe is home now.

Her shunt revision surgery went well, and there seem to be no problems (like the blockage that happened last time) with the new shunt. She has a little bump on the right side of her head where the shunt valve goes into her skull, and a thin ridge leading from the top of her head, down behind her right ear--where the shunt tube is threaded--on its way down into her abdomen. (See pictures)

After the shunt surgery, Chloe was transferred back down to UVRMC (Provo), so that she could be close to us again. As she recovered from the surgery, it was clear to us that she was still in a lot of pain, but her head ultrasounds showed that she was recovering nicely and that there was no further expansion of her ventricles. She was especially irritable at feeding time, so the doctors concluded that she had severe acid reflux. They gave her high doses of anti-reflux medications, and they switched her from breastmilk to lactose-free formula, to see if she had lactose intolerance. But neither of these measures seemed to bring any improvement. They did a "barium swallow test", which can detect how much stomach intake is necessary to cause a reflux episode. If only a tiny bit of barium solution is swallowed, and the stomach starts to experience reflux, then you know that the reflux is pretty serious. Chloe's reflux was pretty serious. So a doctor examined Chloe to determine whether or not she would be a candidate for a reparative surgery. He said that she was too little for it, and that we should wait another month or two. But, as her parents, we didn't want her to have to wait so long to experience relief, so we convinced the doctors to perform another test, a "pH probe" test.

The pH probe is a detector that can determine the acidity of a fluid. The probe, which is at the end of a thin cable, is inserted down the patent's throat and left at the lowest part of the esophagus (right above the stomach). It is left there for a few hours (I can't remember how long). During that time, the machine records the levels of acidity. After the test, the data showed that Chloe experienced at least eleven severe reflux episodes during the study time period. Having seen the test results, the surgeon immediately agreed to perform the surgery.

The surgery that he performed on her can be referred to in casual conversation as "a nissen and a g-tube." These are two different procedures, but they're performed together so often that it's essentially a single surgery. The purpose of the nissen procedure is to keep the stomach from leaking acid into the esophagus. One of the main reasons that someone experiences reflux is that the little muscle at the top of the stomach (the lower esophageal sphincter, or LES) doesn't close all the way, so stomach acids can seep up into the esophagus. The nissen surgery takes the top of the stomach and wraps it around the bottom of the esophagus (like pulling a turtleneck sweater up over your head) to help strengthen the LES. The reason that the doctor was originally reluctant to perform the surgery is that the nissen procedure results in a smaller stomach (since part of it is used to wrap up the LES). The doctor originally said that Chloe's stomach was too small for a nissen. But, upon re-evaluation, he changed his mind.

Another reason why Chloe's stomach might have been leaking acids into the esophagus was because she had a feeding tube down her nose and into her stomach. That feeding tube went right into the LES, so it the stomach was always not-quite-sealed-up. After the nissen surgery, Chloe would no longer have a tube (a nasal-gastric--or NG--tube), but she also wasn't ready to eat yet, so she would need a different kind of tube. That's where the g-tube comes into play. The g-tube is a "gastrointestinal tube" going directly from the outside world into Chloe's stomach. There's a little hole, just below her rib cage on the left side of her body, and a rubber catheter tube comes out of it.

To feed her, we connect a bottle of breastmilk to the tube and let it feed into her stomach by the force of gravity. At night, we hook the tube up to a "kangaroo pump" and she gets a constant drip of formula for eleven consecutive hours. It's not so bad.

We're really looking forward to the day when Owen gets off of his oxygen and Chloe starts to eat consistently from a bottle. It will be nice to have a couple of regular, non-machine-dependant, non-cyborg children at home.

In the mean time, we've gotten lots of help. Julie's parents have been out here a few times, and my mom has been out here twice. She just came out last week, and it was wonderful. Julie and I were actually able to go see a couple of movies and eat out a few times. It was almost like being regular people again.

But, whether or not there is anyone here to help, it's really exhausting. Chloe and Owen eat on slightly different schedules, so when one kid is finished eating, it's time to feed the other one. All told, the break between feeding cycles is between 30 to 90 minutes, depending on how well the kids conform to their eat-wake-sleep cycle. On the bright side, though, the kids do an excellent job of sleeping through the night. Owen will sleep for six or seven hours before needing to be re-fueled, and Chloe can go essentially all night, since her continuous feeding prevents her from getting hungry.

There's no telling how long Chloe will have to have the tube in her tummy. She sucks really well on her pacifier, and she'll suck pretty well on her bottle...until she realized that there's milk coming out of it. She seems to hate having milk in her mouth (no doubt because the reflux made swallowing so painful), and she'll have to learn that eating isn't necessarily a painful thing. She could have the tube for a few months or a few years, and possibly even longer. To a large extent, it depends on whether she suffered any significant brain injuries from her hydrocephalus. If she has any learning disabilities or mental retardation, she might not learn to eat for a few years.

But we'll keep you posted.

--Benji