Contemplating Changes

We were scheduled for an appointment with Dr. R. in the Special Care Clinic today. We haven't seen her since our appointment back in December when Dr. R. was really upset about our NG weaning method. We've been contemplating leaving the Special Care Clinic for quite a while, but we've been thinking about it a lot more since that appointment.

We just feel that we have a different philosophy than Dr. R. when it comes to Sofie's care. I do think she's a good doctor, we just don't agree on some fundamental issues when it comes to feeding and growth. Our experience with the clinic has been really disappointing, and at this point we feel that Sofie's issues can be handled just fine by her regular pediatrician. We are scheduled to see him again on February 5th. I plan on discussing all of this in more detail with him then, and if he's comfortable taking over all of Sofie's care, then we will probably stop going to the Special Care Clinic.

I've been really nervous for this appointment today, since the last one went so badly. I just wasn't looking forward to another bad reaction when we are so very happy with Sofie's progress. Dr. R. and I have different beliefs when it comes to feeding issues and I know that I'm not going to convince her to agree with me anymore than she's going to convince me to agree with her. We'll just have to agree to disagree and that makes for uncomfortable appointments.

Unfortunately, Dr. R. was sick today and had to cancel all her appointments. They haven't called me to reschedule yet, but I'm going to try to reschedule after February 5th, so we can see Dr. Y. prior to our next appointment with Dr. R. I have to admit I was relieved to not be going to the clinic today, but I wish it were under different circumstances.

Sofie is continuing to eat really well, between 22 and 25 ounces per day since we started the Periactin. She's holding her weight steady at around 15 lbs, 6 oz. She's slowly increasing her total daily volume and also the amount she takes with each bottle. She's gone from taking 1 - 2 1/2 oz per bottle to 3 -4 oz per bottle and is eating about 7 times per day. She tends to start out very slowly early in the day and then eat with more frequency as the day goes on.

She's still highly distractable when eating. We feed her in a quiet area with as little going on as possible. Something as small as a phone ringing or a car horn honking outside will stop her feeding. It doesn't take much at all to distract her and once she decides she's done eating, she's done with that feeding. It's extremely difficult to feed her in a public place unless she's really sleepy.

She's continuing to do well with solids, but it's still a work in progress. I think that's typical of any baby though. She usually at least takes a few bites at each meal, up to 2 servings (4-6 T.) at each meal, two to three meals per day. Lately it's been brunch and dinner.

It's just so nice to be free of all the tubes! It's so much easier getting out of the house without the oxygen tank and the feeding pump. To just pick her up and put her in the car seems like such a simple thing, but after you've been dragging around medical equipment for 7 months it's a wonderful feeling of freedom. I can actually just carry her inside somewhere now! Or outside for that matter. We really can just run to the grocery store. It's those simple day to day things that are so nice to be able to do now.

And we're enjoying the freedom of simply walking around the house with her. There were some rooms in the house she'd never been in, because her oxygen tubing didn't stretch that far. I can carry her into the kitchen with me now when I fix a bottle instead of having to put her down in her Bumbo or in the Pack n' Play because her tubing was too hard to maneuver around all the furniture and over the stairs into the kitchen.

We took her out to eat the other day and it was nice to just carry her in and put her in a highchair. I guess I had gotten used to people staring at her with the oxygen and the NG tube and didn't notice it, but I do notice people NOT staring at her now. We went to the grocery store tonight and I had her in the sling just walking around with a basket. So great! As I was walking I thought about how "normal" we looked and how no one would ever know how much she's been through. Then I thought of how envious I would have been of us if I'd seen us this time last year.