Pedialyte Trial - Day 12 (Monday 12/15/08)

Weight 6.990 kg (15 lbs, 6 oz)
Oral Intake 17.5 oz

Well, it's official. This girl LOVES pears. She's been gulping them down for a few days now. Today she ate at least 4 tablespoons of pears for lunch, which is a HUGE amount of solid food for her. She also took 5 ounces from her afternoon bottle today, which is the most she's taken at one time since December 2nd. I thought she might not be as willing to eat as much from her bottles today, since she's been eating a lot more solids, and since we restarted her nightly pedialyte bolus, but she still did great. Keep it up Sofie!

We're a little nervous for Sofie's appointment tomorrow at the Special Care Clinic. I'm sure Dr. R. is not going to be happy about our NG weaning process, since the clinic really pushes volume and weight gain as high priorities. If we were a little further along and she was taking closer to her goal volume by mouth, I think they'd probably be more supportive. But despite the FANTASTIC progress she's made with oral feedings, she's still far from taking the volume they want her to take every day. However, we feel strongly that this is the best thing for her when looking at the big picture of her health.

Tomorrow's appointment is also supposed to be the appointment that we initiate Sofie's trial off of oxygen, so I hope that's not delayed because of the NG wean. There's no reason it should affect the decision to take her off oxygen now, but somehow I'm sure it will. The clinic is a big fan of the rationale that if she has to work harder to breathe without supplemental oxygen, she'll lose weight. But I don't believe that at a flow of 1/8L it's making any difference in her work of breathing. Her respirations are consistently 30's-50's depending on her activity. 30's when sleeping or at rest. 50's when active. So perfect! Her heart rate is also great, usually 70-110, which is perfect and indicates she's not working hard to breathe as well. I've noticed her vitals don't change AT ALL when her oxygen is off for a short time at home, while we are cleaning her nasal cannulas or putting new ones on. I really feel like she hasn't needed it for a very long time, and I'm so ready to get rid of it! If she were a huge fatty like they want her to be, she'd have been able to trial off oxygen months ago, but they always insist she still needs more "catch up" growth. "Catch up" to what? Don't get me wrong, I think Dr. R. is a good doctor and I know she's just being conservative looking out for Sofie and trying to make her as healthy as possible, but sometimes I feel like the priorities are a bit misplaced, and that's frustrating.

I'm much more focused on the overall picture of her health and trying to integrate her back into just being a normal baby. I'd rather work hard on therapeutic play and developmental milestones than pumping her full of food all day, every day. We did that for way too long and, for Sofie, it caused more harm than good.

There's no "perfect" plan of care for any baby, whether you have a CDH baby or a baby born healthy. What works for one, may or may not work for another. You just have to weigh the good and bad of every decision you make and try to envision how it will affect their overall health and well being now and in the future. The majority of the time, I don't feel like the clinic shares my philosophy on this, but instead just inserts each new patient into the same plan of care, like they're just signing off standing orders for all of them. That really may not be the case, but that's just I how I feel about it sometimes.

If the NG wean keeps her from trialing off oxygen tomorrow, then so be it. We'll still continue on with our NG weaning, because I think it's a bigger priority right now than taking off the oxygen. If she doesn't need the oxygen and still has it - oh, well. We can just try to get them to trial her off in another month. Taking off the oxygen is really independent of her at this point. If she really doesn't need it, we'll just take it off when the time comes. But the feeding issue is so complex and interdependent. I don't want to compromise all the progress she's already made.
We'll just hope for the best tomorrow, and maybe we'll be pleasantly surprised and find they're really supportive of how far she's come.