Monday, November 30, 2009

Quick Update - Eye Doctor

We had a great time celebrating Thanksgiving with my family.  Becca finally got to romp around with her 6 cousins, ages 1, 2, 4, 4, 5, 6.  (I hope I got all of those ages right - but you get the picture!)  It was a wonderful, fabulous weekend, and I promise to give it at least one post to itself - but not tonight.  There's a preview pic at the bottom of this post, though - Becca had fun playing with cousin Lucy!  It was also a germfest, of course, but definitely a risk worth taking at this point.  So far, Becca's looking good, but SuperMom seems to have caught something (whether it was actually this weekend or not, who knows).  Thank goodness tonight was a rare meeting-free Monday for SuperDad so that I could take a sick evening (hence the abbreviated post).  Becca was quite fussy tonight, so I'm a bit concerned that she's got something going on, too, but it's awfully hard to tell when a toddler has a headache and a sore throat.  No fever, though, so that's comforting.

There's also a good chance that she was fussy because she barely got a nap because we were back at Vandy again today.  She had an appointment with her ophthalmologist (definitely the hardest specialty to spell), and -- drumroll, please -- we actually left without scheduling a return appointment!  Wow!  They got a good look at her optic nerves and decided once and for all that they are normal - i.e. not hypoplastic; ergo, Becca does not have septo-optic dysplasia!  Check that diagnosis off the active list!  She does, of course, still have the abnormality of the missing septum pellucidum (the part of her brain that didn't form -- it's not like these things spontaneously regenerate), but as that seems to be the only issue, she doesn't satisfy the definition of the syndrome.  She's a little bit nearsighted, so they will see her every year or two, and chances are she'll need glasses along the way, but Dr. Morrison said that we could consider it a graduation!  Wohoo!

To celebrate, we paged Dr. Debbie (my cousin who is a pediatrician at Vandy) and went to lunch at Blackstone's where Deb and I caught up and Becca made friends with everyone in the restaurant.  That girl sure can wave!

All in all, a pretty good day - especially for a sick day!

Tuesday, November 24, 2009

The Matter of Size

We had an appointment at the NICU follow-up clinic last Tuesday, and I've been meaning to update every since then, but, frankly, I've been too disheartened to sit down and write.  All in all, Becca is still doing well.  But we've still got some significant struggles...namely, her growth.

Becca is itty bitty.  I mean, for a long time, she was Itty Bitty.  And she's still living up to her nickname in a big way.  She's not growing how she needs to be.  We don't expect her to catch up; her prematurity AND her severe IUGR is realistically really just too much to overcome.  But she needs to hold her own curve, and she's not.

I knew something was up when she hadn't gained any weight in the 3 months between her WIC appointments.  Our nutritionist there mentioned the possibility of feeding therapy and/or night tube feeds, but I didn't worry too much, as the WIC nutritionist's background is more in general women's and children's health, not in micropreemie growth (though she is wonderful!).  At this appointment, though, we got a more detailed analysis.

Here's where she was 5 months ago (at her last appointment at this clinic).  She weighed  12 pounds, 11 ounces and was 23.5 inches tall, which put her well below even the 3rd percentile lines for her adjusted age (her age based on her due date, remember?).  Her weight to height ratio was right around the 50th percentile, meaning that she was almost perfectly proportioned; she was the "right" weight for her height (unlike the rest of her family ;) ).  Shortly after this appointment, she started wearing 3-6 month clothing.

Last week, at 17 months actual and 14 months adjusted age, she weighed 13 pounds, 4 ounces and was 25.2 inches tall, which, again was well below the 3rd percentile line (no surprise there).  However, her growth curve had flattened, meaning that not only is she not catching up to her peers, she's not even keeping up.  In short, Itty Bitty is getting itty bittier.  Her weight to height ratio had dropped into the 25th percentile range, which was alarming, though as our resident statistician (and SuperDad) noted, that measurement may not be entirely trustworthy for her, as other kids her height are younger and still in the chubby baby phase, whereas, even "normal" kids her age are slimming down as they move into toddlerhood.  Still, it's far from encouraging. Even now, she's wearing 3-6 months clothes, many of which remain too big for her.  (You may have seen me whining on facebook about her crawling out of her pants.  It's still happening.)

So, what do we do?

If her growth doesn't pick up, we'll have to put in a feeding tube.  We're really hoping to avoid this.  It's more surgery, it's more equipment, it's a pain, and it can actually make it harder for kids to learn to eat because they aren't as hungry during the day.  But it would save me a lot of trouble and stress trying to get precious calories into her.  (If only she could have some of my extra pounds!)  If we have to go this route, it won't be the end of the world.  She came really close to getting one before she can home from the hospital, actually, so we were kind of used to the idea.  But now that she's so busy and healthy and such a big kid, it feels like we'd be taking a big step back.  I'd just rather not cut a hole in her stomach.

Before we jump to a g-tube, then we'll try a few new therapies, namely feeding therapies.  We'll see an occupational therapist (OT) and a speech-language pathologist (SLP) for evaluations.  Both OT's and SLP's work with feeding, and since we're not sure if it's an oral-motor issue, a sensory issue, a straight-up behavior modification issue, or something else entirely, we'll start out with both of them and let them decide who needs to follow her.  Since I also have some concerns about non-food-related sensory and speech issues, I'm really glad that she's going to get a full evaluation from an expert in each discipline.  The good news is that a) I have talked to several mothers whose kids have really benefited from feeding therapy and b) there are really good OT's and SLP's at Sumner Station, which is half as close to our home as Vandy is.

That's especially good news because there's a distinct possibility that we'd follow with each of them weekly, which would put our weekly schedule up to 2.5 therapies (since PT has now dropped to every other week!) and one Early Intervention session - plus all the doctor's and WIC appointments.  Phew.  I'm reminded that I left the working world so that I could focus more on Becca's care - and it looks like that was a really, really good decision!

That's where we are.  In some ways, we are back at square 1.  Eating has been the perennial challenge.  But maybe now we'll get the help we need.  And I'll admit, it couldn't come at a better time for me (except maybe sooner!) - I'm about at my breaking point with mealtimes.  Of course, I try not to let Becca see my frustration, but yesterday, she literally ate cheese, a couple of cheese poofs, and a few Cheez-Its, and that is all.  Ugh.  I know stressing out about it will only make it worse.  She's to the age now that I'm trying to avoid talking about her "problems" in front of her, so if you call for an update, please understand that I'm trying to be discreet around her.  I also feel like I've somehow messed up her eating forever.  I've been able to get plenty of other kids to eat, but the one that I am mother to just won't eat.  Again, blaming myself doesn't help, either, but, it's easy to feel free to load up the encouragement.  :)

This Thanksgiving, I'm wildly thankful for my precious girl...even with our challenges.  Who knows, maybe she'll be inspired by the gorgefest that is sure to take place at my parents' house in a few days - maybe the 6 cousins can work some magic on her!

Sunday, November 15, 2009

Big Savings in Our Itty Bitty Household

Let's face it: if you aren't already in awe of my saving spending savvy, you ought to be.  (I don't have to be modest on my own blog, do it?  I'm not that crippling Southern.)  Check out what I bought on Friday.  This assortment (minus the dog bones - didn't mean to put them in there) retails for $29.61.

I paid $2.68.

Even better, I saved 44% overall on our entire grocery bill.  I saved $38.86 on store sales and $29.34 in coupons, for a total savings of $68.20.  I paid $86.72 for a week's worth of groceries, and that included special treats for the dogs and some pricey, ahem, feminine supplies (of a variety that never go on sale).  I take that back, actually.  This was way more than a week's worth of groceries.  But some weeks are like that.  Stores cycle their sales (usually about every six weeks), so certain weeks ended up being bigger trips for us, as some of our family favorites clump together.

But even better than that is that I didn't spend hours clipping and organizing coupons.  The trick is to stock up when things are at their cheapest (most things don't go bad if they are unopened!), and they are at their cheapest when you are able to match a good sale (say, one of Publix's myriad buy one, get one free items) with a good coupon.  Thanks to a fabulous woman that I've never met, a stay at home mom named Jenny, most of the leg work is done for me.  She runs an incredibly helpful --and free!-- site, called Southern Savers, taking each store's ads and matches them with coupons that are either available online or recently appeared in Sunday papers.  Most weeks I spend about an hour organizing, printing, and clipping coupons and making my shopping list (which you can personalize and print right from the site, even!).  It really isn't very difficult or involved.  At least Publix isn't.  Some of the other stores (CVS, Walgreens) have a more complicated scheme (because their big sales operate as register rebates).  With Jenny's help, though, I just check the ad, check my stock, click, print, snip a bit, and then spend forever getting Becca fed and ready to go.  But she can't help me much with that one.  The shopping may take a bit longer because you've often got to be fairly specific about what you are getting, but I think, given how painfully indecisive I am, it has actually streamlined my shopping quite a bit.

When you think about it, it's the best-paying job I've ever had: a hour's prep for $68.20 savings?  Even if a week does take more time, that's still awesome!  (Okay, remember that I've always worked for non-profits when you are reveling in that pay rate.  In my book, at least, it's awesome!)

Another big tip that I jumped on this week: free photo cards from SeeHere, Fuji's photo storage and printing site.  If you use the promo code freebies4mom-1109, you'll be able to order 50 personalized photo cards for FREE - including shipping!  Big thanks go to Amy for that one!  I also discovered that while you can only use the code once per account, you can always sign up for another account and recreate the same card if you need more than 50.  I'm just saying the perhaps maybe both Nancy AND John "purchased" some cards this week.  Apart from this sale, I really like this site for cards, as you have a lot more freedom in editing them than you do at other sites.  I believe I ordered (and actually paid for) our Christmas cards through SeeHere last year as well.

I hope these tips help!  Regardless of how much you may or may not be feeling the economic pinch this year, it's always good to save a few bucks -- and then you can put them towards more important things like a massage or, oh, I don't know, maybe the March of Dimes?  (Sneaky, huh?)  The more you save, the more you can give to help itty bitties like this one!

Monday, November 9, 2009

Some Reasons I Love John Hill

Overhead during bathtime last night:

(Sounds of Becca standing up, sitting down, standing up, etc.)

John: (singing) "I get knocked down, but I get up again. You ain't never gonna keep me down!"

Becca: Aba aba aba aba aba aba aba!

John: No, Becca, that's not ABBA. It's Chumbawumba. Can you say, "Chumbawumba?"

Becca: Aba aba aba aba aba aba aba!

And then John, who is not a big fan of the dogs these days, saying grace at dinner tonight:

"Dear God, thank you for Mommy and all the hard work she did today. Thank you for Becca and that she's so cute. Thank you for the doggies and that...[pause]...they aren't puking today. And thank you for me."

Sunday, November 8, 2009

Prematurity Awareness Month

Technically speaking, November is Prematurity Awareness Month in the U.S. I don't need to tell my loyal readers, though, that every month in our house is Prematurity Awareness Month. Every month, we deal with the after effects of having a very premature and very, extremely, off-the-charts low-birth-weight child. And I am pleased as punch to have the privilege of experiencing these after effects. We came too close to much worse. So every month we grieve a little - whether it's as simple as acknowledging that we can't take Becca to the mall to pose on Santa's germy lap or as complicated as weighing the risks of having another preemie when planning our family. But, thank God, every month -- every day, really -- we celebrate the fact that Becca's early and tumultuous debut did not cost her life.

If you are reading this post, chances are you know Becca's story. If you need a refresher, glance over at the picture on the right, and remember that what you are looking at was Becca's best case scenario. I'm not going to try to make you cry or break your heart tonight, because I know that by walking this journey with us, you have glimpsed just how heart-breaking it is to go through the trauma of a (wrong!) terminal diagnosis and extremely early delivery. You know that for 11 weeks, I carried our child knowing full well that she wasn't supposed to make it. You know that she spent the first 123 days of her life in the hospital. You know that she still has special needs that we work hard to accommodate. You know all of this.

But here's what I know coming out of this experience: I don't want anybody to go through what we experienced. Yes, it was worth it, and yes, if it meant having our Itty Bitty, I would do it again in a heartbeat. And personally, I know that I have learned valuable lessons from our experiences. But if I sit right here at my desk and think of the people that I like the least in this world -- and yes, even as a preacher, there are people that I don't like very much at all (but not you, of course, and I assure you that I am working on the others as well) -- I know that I would do all that I can to make sure that they don't have to live through this nightmare. No parent ought to have to collect ultrasound pictures to frame because they are likely to be the only live photos of their child. No mother should have to beg and plead with an anesthesiologist to be able to stay awake during her c-section because she didn't want to miss out on the only 2-3 minutes of her child's life. Nobody deserves such pain. Nobody.

Unfortunately, though, over 45,000 U.S. babies will be born preterm just this November. You can bet that their families will be aware of prematurity this month.

And so I'm asking your help. Like I said, November is national Prematurity Awareness Month, so of course the fabulous March of Dimes has a campaign for it, called "Banding Together." I've created a virtual band in honor of Becca, and I invite you to band together with us by making a donation in her honor. All you have to do is click here to donate. And as an added bonus, if you donate with a MasterCard, they will double your donation! It's that easy to give twice as much, so even if you can only give $5, go for it - because, as my friend Dr. Hinman taught me, 5x2=10, but 0x0=0. (And if you don't have a MasterCard but would still like to double your gift -- and you trust us! -- you can send us a check for the amount of your donation, and we'll be happy to charge it to our MasterCard.)

You've made a difference in the life of our precious preemie. Here's a chance to make a difference in the life of another. And since preterm birth can happen to anyone, who knows - the baby (or grandbaby or niece or cousin) you save could be your own! (My apologies to Flannery O'Connor on that one...though I have to think that even she would smile at the image below. The Paper Bag Princess is definitely a stellar piece of short fiction.)

Disclaimer: When the March for Babies rolls around again in April, I'm sure I'll be soliciting for funds again. We even have big plans to sell special t-shirts. Many of you gave in April, so if you are once a year type people, know that I'll come cyber-knocking again. But there's nothing wrong with giving twice a year, especially when MasterCard is going to double your gift!

Friday, November 6, 2009

Buster vs. the Lawnmower

Who do you think won?

Win or lose, the chase apparently wore him out:

I'm not sure how he managed to snuggle himself into this position, but I think he's telling Grandma Speas that he wants his own grandpuppy blanket.

Helmet Check - Month 2

Becca has been in her helmet for just over two months now. We're pretty happy with the results so far, though we didn't see as much change this month as last month. We saw Dr. Kelly on Wednesday and both he and Kathleen, the technician at Restorative Health that usually sees Becca, were really happy with how she has responded so far. What do you think?

August 27:

November 4:

It's slow going, and since she is older than most helmet babies, we may not get an entire 6 months of use out of the helmet, but Dr. Kelly thinks that we will continue to see results for at least another 2 months. Big thanks to Nana Dana and G-Diddy for making the helmet therapy possible!

While we're talking about Becca's head...I measured her head circumference last night, and according to my (unskilled) measurements, she actually ON the growth chart for her adjusted age (13+ months). At 17 inches, she is close to the 5th percentile line. Of course, neither of her other measurements is anywhere near being on the chart, but that's another post. Clearly, though, she needs a big head to hold that Speas-Hill brain. She's a genius!

Tuesday, November 3, 2009

Cool Kid

I love the outfit Becca is wearing today. I kind of lived in sweatshirts as a kid (okay, I still do), and I particularly love this little hoodie that was passed on from cousin Shelby (add the hand-me-down jeans from Lexi, and all I had to get was a onesie - yay for recycling!). I couldn't even bring myself to put a bow on her today; she just looked too cool for one...especially when she is slouching against the wall. Too funny. Note the wisp of hair that is peeking out of the top of her helmet...our little Alfalfa sprout.

Giving Thanksgiving a Chance

Dedicated to two of the biggest fans of Thanksgiving I know: Jessica and Jana.

Sunday, November 1, 2009

One WHOLE Month!

It's official! We managed to go an ENTIRE month without a doctor's appointment! Wow!

We did scoot in to the Health Department to get her H1N1 shot a couple of weeks ago. She didn't cry at all. None. A little whimper - one - but that was it. I don't know whether to be happy or sad about that - or both. Probably a little of both.

But that's not the point. It wasn't an actual doctor's visit, so it didn't break our streak. When we go to our helmet appointment on Wednesday, we will have made it 35 days doctor-free!

And when I went to get her up from her nap the other day, I saw something that looked a lot like this:
May be time to lower her crib mattress again!

Butterfly in the Sky...

Did you hear that the last new episode of Reading Rainbow aired this month? How sad! In honor of my favorite kids' show, Becca was a butterfly for Halloween. Okay, it might have just been in honor of my loving butterflies, but whatever. It was super-cute. We had our own little mini Halloween party at Aunt Lauren's - lots of fun. Here's my little butterfly!

And even though I didn't torture the dogs with their costumes this year, Sasha joined in the fun. (And I'm not ruling out the idea of dressing them all up for a photo shoot - my little butterfly, ladybug, and bumble bee!) She's wearing Becca's back-up antennae, which we ended up not using since her headpiece actually fit over her helmet. Yay for stretchable fleece!