SICC visit

Eliza had another follow up appointment at the SICC (Special Infant Care Clinc) today. We met with the nurse, physical therapist, neonatologist fellow and Eliza's neonatologist one after the other. There's a reason these appointments usually take 3 hours! Everyone was impressed with her growth and progress in most developmental areas. Of course she is still behind but they could tell a big difference (glad they agree!) from our last visit. She has low muscle tone (hypotonic) especially in her trunk region. This was our main take home from the visit - more physical therapy is needed. Fortunately, we were already in the process of increasing her physical therapy visits to twice a week. Hopefully with some help from PT she will be able to sit and maybe roll over by her birthday.

Eliza is now 13 pounds 11 ounces, and 24.5 inches, which brings her up to about the fifth percentile for her adjusted age - she's catching up slowly but steadily! We're not paying any attention to where she is on the growth curve based on her actual age (hint: she isn't). That's a more long term goal: be on the non-adjusted-age growth curve by age two or three years.

The PT and doctors confirmed that with Eliza's lack of feeding progress so far she will probably continue to have feeding difficulties requiring g-tube nutrition for some time to come, probably two or three years at least. Disappointing but not much of a surprise to us at this point. Eliza still really has no interest in eating and even when we can get her to take a little from the bottle (about 40 mL max) it requires lots of cheek and chin support from us because of her underdeveloped sucking and swallowing muscles. She also doesn't seem to feel hunger or at least has no connection between it and food.

Thanks to (or despite?) Eliza's growth, we came home with big changes to her feeding plan. She needs more volume and more calories, but since she still has reflux issues that will be a challenge. To help with this they want us to start start using the feeding pump for a slow continuous feed overnight, and also switch from feeding her every three hours to every four. (We don't quite understand why doing fewer, larger feeds is supposed to help with her reflux - we're hoping to get that clarified soon.) This schedule change will be an interesting change to implement; she's been eating "q3h" ever since we brought her home. We are also reducing one of Eliza's reflux meds. No more Zantac! We will be continuing with higher doses of Reglan and Prilosec for now.

Our next SICC is not until early November! That will be her first diagnostic visit, with a child psychologist, hearing and vision tests, and so forth. Even then that won't tell us a whole lot about her long-term prognosis, but will establish a baseline to compare against at her subsequent diagnostic visits (at 18 and 30 months, I believe) to measure her progress. It's a challenge to think about and pay attention to both the short term and the long term where Eliza is concerned; we always feel like we (and her doctors) are potentially overlooking something. On the one hand it's easy to see how her short term issues and goals (feeding schedules, growth, PT, etc.) lead into her long-term development, but on the other hand, we can't help but worry about long-term issues that either are hard to spot in the short term or won't even show up until later (such as the possibility of cerebral palsy or other long-term impact from her early brain bleeds, her vision development after ROP, and so forth). I guess all we can do is focus on the short term for now and let the long term take care of itself!