Sunday, August 28, 2011

Time for some more pictures

Fortunately we didnt see much of Irene this weekend. Quite breezy and just a few drops of rain. Eliza didn't really seem to care about her first hurricane either. We enjoyed the cooler weather in the wake of it though! 

We are really over due for some blog posting around here since there has been a lot going on, but then lots-going-on leaves little time for posting. :) I do want to take a few mins to share a few recent-ish pictures. 
Eliza striking her philosophical pose:



Pasha wondering what all the fun is about:


Daddy gives good kisses!


Cuteness!

I love these pictures of her! Such pretty eyes!


Oh yeah gotta love some baby drool! 


You can tell what time of day it is by what Eliza is wearing lately. Naked=End of the day. By afternoon I've given up on changing spit-up-on clothing and opted for wiping at naked skin instead!

Completely shocked when I saw these pictures. These are the first ones that I realized how long she is getting,wow! She really is growing up even if some days/weeks it seems like shes staying in exactly the same place. One year old in less than 2 weeks...



Classic Eliza pose. Tongue hanging out, eyebrows raised. "Whats happening dudes?"

Friday, August 5, 2011

Sleepy time

Our big thing the last couple of weeks with Eliza has been sleep. Specifically, of course, Eliza's sleep.

Naps

As Heather has mentioned previously, Eliza still just plain isn't a very good napper. She has a very strong tendency to wake up after half an hour, no matter how exhausted she might be, and it's a real challenge to get her back to sleep afterward even if she's still clearly tired when she wakes up. She also is not at all able to start or continue a nap in her crib - the only way to get her to nap is to swaddle her, rock her to sleep in her dark room, and then continue to hold her until she wakes up. This was something we just accepted, and mostly embraced while she was younger (especially given that being a preemie tends to lead to more difficulties with sleep - hello NICUitis!) but now that she's getting to be a big girl it's time to start working on this - fewer, longer naps; more time awake between naps; and being able to nap in her crib. The ultimate goal is really just quality sleep that we don't feel she is getting now. Wish us strength - we're gonna need it!

“Why would I want to take a nap? There's so much going on to see and interact with!”

Nighttime sleep

Since we started using the feeding pump for continuous feeds overnight (from about 9 PM to about 5 AM), I don't have to get up at 3 AM to feed her any more. That's great! However, it doesn't always translate into all of us getting to sleep through the night. While Eliza still usually sleeps very soundly once she is asleep, there are three problems:

1) She's having a lot harder time falling asleep at bedtime most nights than she used to. Time was she'd always be passed out completely by the end of her dinnertime feed and it would simply be a matter of laying her in the crib and turning out the light afterward. She still often falls asleep during the feed, but now she tends to wake up when we lay her down in the crib, and it can take an hour or much more to get her back to sleep after that.

2) The feeding pump, oh the feeding pump. It seems to be very sensitive about the consistency of the formula passing through the pump - at seemingly random times, the pump will start beeping and display an alarm about "check for clogs in the line". The beeping won't stop until you go in there and push a button to continue pumping, and there's no way to adjust the sensitivity or disable this alarm. We need to have the monitor volume turned up next to the bed all night so that I can hear the alarm and run to turn it off before the beeping disturbs Eliza (and Heather - night time is my responsibility and she needs her rest after handling baby all day while I'm at work!). Some nights the pump alarm has gone off at fifteen-minute intervals for several hours until we finally got too frustrated with it and simply turned the pump off for the rest of the night. Hoping that the pump was simply defective, we arranged to exchange it with a replacement model, which has helped a little but not completely gotten rid of the alarms. I've also been making an extra effort to ensure that the formula is as thoroughly mixed and blended as possible before feeding it into the pump, and that seems to help somewhat - here's hoping that continues to improve!

3) Eliza is now waking up between 5 and 5:30 AM every morning. She's still sleepy when she wakes up, and can often be soothed back to sleep for an hour or and hour and a half more if we pick her up and continue to hold her. We're not sure why she's waking up (and staying awake!) given that she is still sleepy at that point and that she's still not getting as much total sleep each day as she really ought. Getting her to go back to sleep at that point is essential because if she stays awake from 5 onwards, she can't make it to even 7am (her next scheduled feed), much less 8 AM (when her physical therapist comes on Tuesdays and Thursdays) without being utterly exhausted, and from the books we've been reading she really should be up till at least 8:30 before her next morning nap.

One thing that's been essential since Eliza first came home, and is even more essential as we work on improving her sleeping, is our video baby monitor. It's so helpful to be able to not only hear whether she's fussing or crying, but also to SEE if she's tossing and turning in her sleep, playing quietly instead of napping, or (as has been unfortunately common lately) vomiting her last meal all over herself and her bed. We're not too happy with this particular model (we had to return the first one for a replacement after two months of use, and now we're having to do so again after about three months with this one, but at least it's under warranty!) but the technology itself is absolutely indispensable.

We were going to start working on some "sleep training" tonight to get her to start being able to fall asleep in her crib instead of in our arms, but she "cheated" tonight by passing out before the end of dinner and staying asleep even after I moved her to the crib. Funny baby! We're not complaining about that (!) but it's a bit of a letdown after we psyched ourselves up to start working on this with her. Just goes to show that she's got a mind of her own, our baby!

Tuesday, July 19, 2011

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!

Saturday, July 16, 2011

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!

____________________________________________________



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

______________________________________________________









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! 


Wednesday, July 6, 2011

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.






Posted by Picasa