Doctor Appointments update

We have a few things to update from our most recent doctor's appointments. Last week Waverly saw the pulmonologist. She sees him because of being on the cardiac/apnea monitor. She got a good report there. Basically, he gave her clearance to be off the monitor if she is with us and we are holding her or attending to her. If she is napping, sleeping, or alone, then she needs to be on it. It's so nice to be able to unhook her a little more often and actually get to walk around with her some.

Today we saw the gastroenterologist. That was a very encouraging appointment. Waverly is gaining weight very well, and they were pleased with how she is tolerating her feeds. They want us to start increasing her bolus feeds during the day by 1-2mL every 2 days, with the end goal being 65mL per bolus feed. After about 2 weeks, we are also supposed to start increasing her continuous nighttime feed at the same rate, to get her to 30-35mL/hour overnight. (She is currently on 45mL/hour bolus during the day every 3 hours and 21mL/hour overnight for 10 hours continuous.) So we will see how she does as we increase her intake. They did bloodwork to see if she needs to continue on the special formula (Neosure, for preemies) or if she can "graduate" to regular formula also. She is still receiving primarily breastmilk that is just fortified with the Neosure. But, as that runs out, we will put her on just the formula. He also said that we can just do the formula when we're out instead of having to take a cooler and a bottle of breastmilk along (just a little thing that will make going out with her a little easier).

We also scheduled the date for her PEG to be removed and replaced with the MIC-KEY button. Basically, they will remove the long tube from her stomach, and place a small port right against the skin on her stomach at the tube site. The button is much easier to deal with (her tube leaks all the time...), and much less of a nuisance since it sits right against the skin. We can't wait for her button! They make you wait for 3 months after the PEG placement to get the button, so we were able to schedule it for August 19th (1 day after the 3 month mark!).

In September, we will do a repeat swallow study with her to see if she's able to swallow without aspirating. If she is able to do that, then we'll be able to feed her some orally again. She will always have the g-tube as her primary means of nutrition, but if she is able to safely swallow, then we will be allowed to feed her for pleasure (give her positive oral experiences, taste, etc.). So you can pray that she will be able to do well on that study so we can have some fun with feeding her as well. If not, it's not a big deal, since she doesn't need it for growth or sustenance, but it would just be nice to be able to have that to do with her.

Finally, the doctor was able to get her to have a BM. Without sharing too much detail, she hadn't gone since last Thursday (a week!), and when he checked her out, he saw that she had a little place that was preventing her from going (said it was normal with her growth). Once he took care of that, she was able to go, and although she wasn't really acting uncomfortable before, she definitely seems happy that that's happened. We are supposed to "help" her occasionally if she is having trouble going, but hopefully he's got her set on the right track. Over the past week she hadn't gained as much weight as I'd expected without having a BM for a whole week, but at the doctor, we discovered why. She is now 21 inches long! She's grown taller!

We were very pleased and encouraged with her visits, and pray that we will continue to receive some of these good news visits.