Get Us Out of this Prison!!!

It's been a long time since the last update. And I guess it's been deliberate. For the last two or three weeks, we've been continually on the cusp of one development or another. Consequently, lots of stuff has happened since the last update, but I keep thinking, "I'll do the update in a few days, as soon as we know more about this new thing." Well, now it's been a long time, and an update is definitely in order.

By the way, the kids are both up to good, healthy weights. We don't pay much attention anymore to their daily weight fluctuations, and I haven't actually known their exact weights in over a week. But Owen weighs at least seven and a half pounds (probably closer to eight) and Chloe is somewhere in the ballpark of seven pounds, give or take a few ounces.

If I remember correctly, the last update was done when Chloe had just had her eye surgery. Her recovery has gone well, and the doctor says that her eyes look good. In fact, right after the surgery he told us he'd be back in a week to do a check-up, but he didn't expect it to look much better. He just hoped it didn't look any worse. He said that the bulk of the recovery would happen after the first week anyhow, so he would be satisfied as long as it didn't look any worse.

Well, when he came back in a week, he was happy to say that her retinas actually looked much better than they did at the time of the surgery. He said that lots of the twisty, spidery blood vessels were starting to clear up.

After two more weeks, when he did his final inspection of her eyes, he said that he was very happy with the results and that we could consider the surgery a success.

What a relief.

Meanwhile, Owen had been doing reasonably well in learning how to eat. Julie was coming in three times a day to breast-feed him (he was tube-fed the rest of the time), and he usually did a pretty good job at it. The trouble was that he was always exhausted. Julie would come to the crib to get him, but he was always more interested in sleeping, so she would talk to him and poke him and bug him, trying to get him to wake up for his feeding. Eventually he would wake up and make a few limp attempts to suck, but then he would fall asleep again. Eventually, though, after a half-hour or forty-five minutes, Julie could usually convince him to get a decent meal's worth of food into him.

So, the NICU staff said that they thought he was about ready to go home. They started him on feedings-on-demand, meaning that Julie would hang out at the hospital, waiting for Owen to wake up hungry. Like a normal baby, he would be fed when he was hungry, rather than on a 3-hour schedule. And then, after doing feedings-on demand for a day or two, we would room-in with him, spending the night in a little bedroom at the hospital, pretending that we were at home. If there were any troubles, the hospital staff would be right around the corner to help.

Anyhow, Owen started doing feedings-on-demand. He didn't wake up every three hours, but about every four-and-a-half hours instead. When he did wake up, he was hungry, and started eating right away, without having to be coaxed into it, and that was a satisfying change. Everything seemed to be going well, so we made plans to room-in, with the expectation that Owen would be coming home the next day. We packed our bags and bought frozen dinners to have at the hospital. Julie sent out an email to about thirty people announcing that Owen was coming home the next day. But when we got there, Owen wouldn't eat. He was fast asleep and wouldn't wake up for anything.

After he had gone more than six hours since his last feeding, without the slightest interest in waking up, his nurse said that she was going to put the tube back in, and that he wouldn't be coming home. Also, according to the nurse, he had lost some weight in the previous few days. He just wasn't ready to come home yet.

So we packed all of our stuff up again and carried an empty carseat back down to the car. Owen was put back on the 3-hour tube-feeding schedule, and Julie came in twice a day to breast-feed him. It was a major setback, and we were depressed.

At about this time, there started to be problems again with Chloe's head. The nurses had been making regular measurements of the circumference of her head, and they were starting to notice that it was growing too fast. They did another ultrasound of her head and confirmed that the ventricles in her brain were indeed growing again. After a few days, they sent her to Primary Children's Medical Center in Salt Lake. She was transported in an ambulance with a special infant transport team and special neonatal life-support equipment (in case she needed it (she didn't)).

The pediatric neurologists at PCMC agreed that they would have to put a shunt into Chloe's head. A shunt is a little tube that gets inserted through the skull and into the ventricle to let the fluid drain, since the fluid isn't draining well through its normal opening (near the back of the brain). The rest of the tube gets fed (beneath her skin) back behind her ear, down her neck, down the side of her body, and into her abdominal cavity, where the fluid just gets absorbed into the system.

Chloe was transported to PCMC about a week and a half ago, on a Sunday evening. They performed the shunt placement surgery on Tuesday, and Chloe was back in Utah Valley by Friday evening.

When I say Chloe for the first time on Wednesday afternoon, it was easy to see the difference in her head. A lot of swelling had gone down, even at that point. And, according to the doctors, everything about the surgery had been completely routine.

She's been back down here for nearly a week now, but she hasn't been herself. Before the surgery, she was a very quiet baby, and she liked to look around the room, noticing things going on around her. Now, she's much more irritable. She cries a lot more than she did before, and she seems too preoccupied (with pain, probably?) to notice much about what's going on around her. When I hold her, it takes much longer for her to settle into a comfortable position, and she squirms a lot whenever she's uncomfortable.

The nurses have been giving her children's Tylenol for the last few days, but it doesn't seem to be helping much, so they've switched her to Tylenol with codeine. She got her first dose of that early this morning, and she's been pretty zonked out for the last eight hours or so. The next time she gets it, they're going to decrease her dosage a bit.

We're a little worried about her, and if she doesn't make much visible improvement in the next day or two, we're going to ask that she have a follow-up exam with one of the neonatalogists here.

At the present moment, we're rooming-in with Owen again. And this time it's for real. I'm sitting on the bed in the little hotel-room that they've got for us here (typing on my laptop computer). Owen is sleeping in a little plastic bed in the corner of the room. I just finished giving him a bottle about fifteen minutes ago.

His feedings have been going very well. He hasn't had a tube-feeding in more than three days, and he's doing a great job feeding at both the breast and the bottle (we have to give him a bottle at least once or twice a day, so that we can sneak his vitamins and medicine into the milk). He only eats when he's hungry, but he gets hungry often enough to make it count. And when he eats, he get's a decent amount of milk. So, there's no question in our minds that he'll do fine without the constant nutritional supervision of the hospital staff.

He'll be coming home with us at about six o'clock this afternoon. Julie and I are incredibly excited.

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