Eliza's development

We haven't been posting much lately, have we? Daily life seems to be taking so much of our time lately that it's hard to make time to sit down and write a blog post. I guess it's been almost two months since the last post in which we talked at all about Eliza's development. So, since December, what's new with Eliza?

She's up to 10 teeth now - all eight of her incisors plus two upper molars that have just put in an appearance in the last couple of weeks. Guess we're gonna have to start learning to brush her teeth soon! (Since she doesn't really eat anything by mouth that would gunk up her teeth, that's been a lower priority than it might otherwise be...)

She weighs over 22 pounds now, and getting to be quite an armful to carry around. Eliza's continuing to move up the growth charts overall, and she'll have to graduate to a toddler car seat pretty soon!

Eliza has learned to clap and laugh. Both of these new skills put in an appearance at Christmas time - whenever a roomful of family members were talking and laughing together, Eliza would laugh along with them - it was super cute! She hasn't laughed much since we came home from the holidays (we're trying not to read too much into that...!) but she continues to clap a lot, especially when something is entertaining or pleasing to her. Yay communication skills!

She's gotten good enough at sitting now that she's comfortable leaning forward or sideways to reach for things. (When she first learned to sit on her own, Eliza was pretty much "locked down" and wouldn't move around at all if she could help it.) She's also much more comfortable prone (lying on her tummy or propped up on all fours by us) than she ever was before - she'll play with toys for several minutes before rolling back to her side, and doesn't seem at all fazed or stressed by being on her tummy any more.


We're working very hard in PT (and on our own between PT sessions) on teaching her the skills to transition between sitting, side-lying, and lying prone. All of this is especially challenging for her as a micropreemie, but she seems to be making good progress lately thanks to all the hard work. Just in the last few days, she's finally figured out how to repeatedly roll from her side to her tummy by herself, something that we've been watching for since last May. Hurray! She's clearly getting bored with staying in one place for a long time, so she's really motivated to get around now however she can - and rolling over seems to be a good starting point!

As far as the more long-term prognosis goes, we've been reminded that as a micropreemie who suffered a grade II IVH (brain bleed), Eliza continues to be at significantly elevated risk for conditions including cerebral palsy, learning disabilities, and ADHD. The intensive PT exercises we've been doing to help with her low tone and learn to get around on her own are also essential for minimizing the likelihood/severity of cerebral palsy, especially. Also, we've been grappling with the awareness that even as Eliza's been making progress, she's falling "further behind" compared to the expected development of a baby her age. (In other words, for every "month" of developmental progress she's achieved, it's taken her more than a month to get there.)

At least one of her therapists seems to think this is not uncommon for babies like her - they fall further behind before they start to catch up long-term. She says that developmental delays can tend to be more "fractional" than "relative". So it's not a matter of her being 3 months developmentally at age 6 months, 6 months developmentally at 9 months age, 9 months developmentally at 12 months age, etc. Instead, it's more likely (and matches with what we've experienced so far) that her development will continue more like 3 months developmentally at 6 months age, 6 months developmentally at 12 months age, 9 months developmentally at 18 months age, etc. At some point (I guess as "normal development" begins to slow down?) this trend will reverse - she will hopefully not be 9 years developmentally at 18 years age! - but it seems like it will be a long time before we're there. It's been a really sobering (and stressful) message, but all things considered I'd rather be informed and have realistic expectations. We really can't predict her actual long-term development until we actually get there, so we will just continue to remind ourselves to enjoy the journey, and celebrate each step she makes!

3 Months Adjusted

Eliza is 3 months old adjusted (since her due date) and 8lbs 10oz as of her last weight check at the pediatrician a few days ago. It's a little strange to have so many different ages for Eliza (actual, adjusted, developmental). Just today a physical therapist* from our county Early Intervention program was calculating yet a different age. I find myself having to pause and think about it when someone asks how old she is. :)

So what is she up to?

-- Continuing to babble and smile. She is the most happy and smiley in the mornings. I cherish the mornings with her when she is happy and calm. As for the babbling, she uses it when she is content and when she is working herself into an over-stimulation melt down.. noticing the difference can be quite tricky.

-- Sat in the bumbo seat for the first time. She's definitely not sure about it yet. I'm fairly certain she's thinking "what is this weird contraption that's making me bend the opposite way I like to be." Thanks to all that time outside the womb, Eliza is pretty stiff and gets herself in a backward swan-dive position when left to her own devices. Practicing for the high dive I believe!

-- Found her mouth with her hands. She gives them a good lick but hasn't worked it out enough to prefer it to her paci.

-- Fighting naps with a vengeance. She is pretty much on hyper-alert when she is awake during the day and she only has short periods of calm. The hyper-alert times transition into full melt down in the blink of an eye.Thanks to some advice from the Doula we are watching the clock more to try to get her into a better sleep pattern during the day. I think it does help when it works but it means I spend most of the day trying to get her to sleep and when she finally does go to sleep, trying to keep her there.

-- And as of the last week - getting better at her feeding! No really! For the last few days the volume she has been able to take by bottle has increased quite a bit and she's even taken a few full bottles! Do you know how good this is?! Let me explain:

I gave E a good talking to last week after our Speech therapy follow up (Speech therapists, along with occupational therapists are the ones that help with feeding skills) at the Special Infant Care Clinic and she must have been listening. At our appointment last week they were concerned with how little progress she's made feeding-wise. Apparently most babies if they are going to be make progress with the NG tube then they will within the first month of having it. She's had it almost 8 weeks now and before this last week there was very little progress in how much she is taking by bottle and her state (attitude) while eating by bottle. She's usually quite unhappy while eating and trys to pull away by arching and squirming. Previously this behavior has been attributed to reflux and even though she does have reflux no one believes that is the main cause any longer. So their suggestion? A g-tube or gastrostomy tube which would replace her NG or nasal tube. A g-tube provides direct access to the stomach instead of going down the nasal passage and esophagus. It would mean major surgery. I was shocked! I was not expecting this to be suggested since during all previous complaints by us about how poorly she fed we were met with some version of "She's gaining weight fine and just give it some time, as she gains weight it will get better." The story had changed all of a sudden. Since she hasnt made quick progress she will probably need help (either NG or G) for many more months and there is concern with the NG tube affecting her development negatively. I definitely can agree with this. I hate having to put the tube down her nose every couple of days when she pulls it out and the frequency will increase as she gets older. We have to worry about inflammation and irritation all in the area that we want her to have positive feelings about. There is a lot more to this of course but in summary what we have gleaned is that-- the NG tube is the less invasive, better option for short term situations but when it looks like things are going to require long term intervention then putting in a G-tube works best developmentally  We don't want Eliza to have to go through another major surgery but we also want to do what is best for Eliza in the long run. The fact that she is making improvements this week is great! We are hoping that it continues and is enough improvement to not have to make the surgery decision. We have the first consultation with the surgeon this week to talk about things. We will see.

Oh look, feeding talk has hijacked my post.. thats a pretty good representation of our days as well. Ok I am done with this post.. I need to get to bed while Eliza is sleeping! More sometime later.


*The physical therapist was here to assess Eliza's development and see what if any therapy she currently needs. Fortunately she thought gross and minor motor skill-wise Eliza was doing OK and didn't need weekly therapy yet. Of course they agreed that she needs feeding therapy and hopefully will have someone out here soon for weekly sessions.