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!

Progress

Eliza's development is a funny thing. In so many areas she is making very little or no progress for what seems like a very long time. Some areas even seem to be regressing - she's not trying to roll over very much lately, nor is she babbling nearly as much as she once did. But then, every so often, she just has a sudden breakthrough that comes from nowhere. Cases in point:


Reaching for things. She used to never do this. Now she can even reach up off the floor to get something above her, and does so all the time.


Grabbing her knees and even her feet. When she first came home, she wasn't even flexible enough for us to help her into this position, but lately she's become much more flexible and has started to bring her knees and feet up on her own and play with them.


Even growing hair on her head. She was bald for a long time, then had only peach fuzz for a long time after that. Lately it's started to really take off, though it's still longest and thickest right on top of her head and nearly nonexistent on the temples. Heather's taken to styling it as a little mohawk, which looks very fetching.

Eliza and Claire

Remember Claire? Eliza's BFF from the NICU? We finally got a chance to meet up with her and her family today. It was the first time the girls have seen each other since being in the NICU together! We had a great time getting to see them and visit. Wish we didn't live so far apart!

We almost didn't make it out since on the way one of our tires decided to instantly go flat while driving down the interstate. Fortunately Glenn was able to change the flat and we located a Discount Tire place with our handy dandy GPS. Thank goodness for technology! All in all we were only about 1.5 hrs late! :)

Being awfully patient waiting for her ride to be fixed!

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All smiles! These girls have come so far! Look at the difference from this picture:

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Eliza wanted Claire to have a pair of her favorite things, Baby Legs!

Claire was more impressed with the cardboard wrapping though!

Oh look both babies wanted the cardboard!

Whoops mama changed out the cardboard for some ribbon...

...........

Total meltdown!

They really did great after a long day of traveling, missed naps, sitting through lunch with us adults, and then posing for a photo shoot. Those preemies, tiny but strong! 

Twas a Happy Fourth of July

We had a nice and simple Independence Day here. Glenn's sister came up and visited and we grilled out for lunch with some friends. After a full day of enjoying the holiday, the whole family fell asleep before the fireworks even started. :)

Trying out flying in the back yard.

Sporting the red, white, and blue

Making silly faces with Aunt Emily

Helping Dad bring in the flag before the thunderstorm!

New Lens

Glenn got a new lens for the DLSR for Fathers Day. Here are a few of the test shots. I think I like.