Showing posts with label food. Show all posts
Showing posts with label food. Show all posts
Tuesday, November 22, 2011
Feeding Therapy Victory!
Yes, we are alive. And here's proof. Hooray for the chocolately, protein-y goodness of Nutella! That's a way for a girl to get some calories!
Tuesday, February 22, 2011
Feeding Update
I could just tell you that Becca's eating is improving...but it's more fun to show you with this video. She still needs lots of feeding therapy and will not be leaving the feeding pump behind any time soon (or for a few years), but she is at least experimenting with some new textures these days...like that of...JELLO!
Thursday, February 3, 2011
Weekly Weigh-In...
...the just kidding version.
We skipped therapy and the weekly weigh-in on Wednesday because SuperMom was feeling super sinusy and miserable. If she's out and about tomorrow, we may swing by the ped to get her weighed. Maybe not. It is 20 miles from our house, after all.
However, I did just watch Becca eat an entire hot dog. Thank you, Nathan's, for your 170 calories and 15 grams of fat. Couldn't have gone straight to the bum of a better girl.
We skipped therapy and the weekly weigh-in on Wednesday because SuperMom was feeling super sinusy and miserable. If she's out and about tomorrow, we may swing by the ped to get her weighed. Maybe not. It is 20 miles from our house, after all.
However, I did just watch Becca eat an entire hot dog. Thank you, Nathan's, for your 170 calories and 15 grams of fat. Couldn't have gone straight to the bum of a better girl.
Friday, January 14, 2011
Food, Food and More Food
At our weigh-in on Wednesday, Becca also had a quick check-in appointment with Dr. Rawls, our general pediatrician. Have I mentioned how much I love him lately? Or how much I love general pediatricians in general? So often the specialists get caught up in trying to solve the particular problems in their respective areas that they don't stop and look at Becca as a whole, real patient. And they aren't really concerned with solving the problems we, as a family, see as problems. Our peds, though - Dr. Collins in Gallatin and now Dr. Rawls - have been AWESOME about listening to us (mostly me!), looking at the big picture, and trying to figure out what is truly best for Becca - not just how to fix what they see as an isolated problem - or something that I think is a problem but isn't to them, medically speaking.
I'm talking, of course, about Becca's vomiting and lack of weight gain. Which is a problem (or two problems, depending on how you look at it). It's a problem for Becca physically, but I'm afraid that it's also becoming a problem for her in other ways. For example, Becca got a baby doll for Christmas. She LOVES Baby Rosie and wants her to do what Becca does. Baby Rosie eats a snack while Becca eats, she reads books while Becca reads, and she goes "night night" in her crib when Becca goes to bed in hers. Pretty typical (and adorable). But the other day, she tipped Baby Rosie over and made her throw up, then her lifted up to shoulder and patted her, saying, "It's okay, baby; it's okay."
Well. It seems throwing up is as much a part of Becca's routine as getting dressed. Or sucking on a paci (though mean old mommy and daddy are making this less and less a part of her routine). Or, oh, eating. Yeah, eating. And since, in Becca's world, what goes down must come up, the puking doesn't exactly encourage the eating...which then doesn't encourage the weight gain.
The GI doesn't seem to see this as a problem. Which is baffling to me. But they are, apparently, useless on this issue.
Dr. Rawls, though, agrees that this is not, um, optimal and helped me work up a plan. The biggest change is that we are going to hook her up to her feeding pump during naps, since these are usually puke-free. She's still a good napper at home, so that's a chance to get another 2-3 hours of feeds in her during the day. We're also going to be more aggressive and consistent with bolus feeds throughout the day. (And by "aggressive," I mean that I'm not supposed to be afraid that filling her up with formula will mess up her oral feedings (i.e. real meals). The girl needs calories, and getting good nutrition actually stimulates your appetite, since without it your body goes into starvation mode...and this is the frustrating cycle of the failure to thrive issue.) We're not going to get into taking the feeding pump to school, but I did teach her teachers how to do a bolus feed this week. (So much for being able to go to a regular preschool!) Unfortunately, Becca threw up during her bolus feed today. I'm really hoping this doesn't become a pattern because in one bolus we can get an extra 90 calories in her - a significant part of the 980 calories she needs every day.
On the upside, though, Becca is eating orally more and more. She's (obviously) still not a true oral feeder, but she's trying some new things and increasing her volume of things that she likes. She's particularly fond of meat these days, which is GREAT because she needs a high-protein diet. Generally speaking, she likes strong flavors because she can taste and find them better in her hyposensitive mouth. Her taste buds need a little waking up.
For example, last night we cashed in some Olive Garden gift cards and celebrated my birthday (thanks, Jen!). Becca is a really, really big fan of the Olive Garden, and it never ceases to amaze how much she will eat there. She even cried big tears when we were leaving because she wanted to stay and eat some more. (We left anyway because what she wanted at that point was to eat more Andes mints...which are neither optimal nutrition nor conducive to a smooth bedtime, which was next on her agenda.) She started off her meal with a lemon slice, chomping on the middle part and eventually taking bites out of the rind itself (not uncommon). She then moved on to gobs and gobs and gobs of grated Romano cheese. Seriously, every time a server walked by, she asked for more cheese. I'm guessing she ate a good 3 ounces of cheese. When the salad arrived, she had some onion, a few bites of pepper (banana peppers? I don't eat peppers, so I don't know what kind they are or how spicy they are.), and...her favorite...black olives. When our entrées arrived, she ate some of my chicken marsala and a bite of John's braised short ribs. And then she was back to the cheese. And the Andes mint. And she did NOT want to leave the "Ah-yiv Darden!" Big. Tears.
I take this as a good sign, both that she WILL eventually learn to eat enough orally AND that she actually is my daughter. I do so love a good Italian meal. Perhaps in the future, Becca will, too, sauce and all.
Sunday, August 29, 2010
Whoa!
Breaking news: Becca just kissed a french fry dipped in barbecue sauce - twice!
This is huge, folks. Huge. Super progress.
After the kisses, she kind of licked the sauce off her mouth and made the funniest expression I've seen in a long time - kind of a what-the-hell-is-this-stuff-in-my-mouth-wait-I-might-like-it look. Wish I had a video camera in my eyes so I could share it with you now. Then she was "a-done" with french fries completely, but still willing to eat "appah" (translation: apple, though the fruit in question is really a peach).
Moral of the story? Despite what the nutritional facts tell you, a little bit of McDonald's does a body good.
p.s. "Whoa!" is now one of Becca's favorite words...as in, "whoa!" I almost slammed my fingers in the door, etc.
Sunday, June 27, 2010
Back to the Hospital!
There is lots and lots to fill you in on regarding our past week: Becca turning 2, moving to our new house (the best present I've ever given a 2-year-old!), Becca physical therapy evaluation at Vandy, John's and my speaking - keynoting! - at a conference on prematurity, and Saturday's Elmopalooza, but, as I've just stopped in at Moe's in the midst of errands to use their free wifi (still not internet at the house!), all I've only got time to tell you about the upcoming week.
On Tuesday I managed to wrestle my way on to the nutritionist's (at the GI) schedule, and she snuck the doc in to have a looksey. I told him flat-out that we needed to do something because she's throwing up more and not gaining weight, and, frankly, I just can't take it anymore.
So we made a plan. I was caught completely off-guard, however, when he told me that the plan involves 3-7 days in the hospital and that he'd like them to be next week. Whoa! We'll go in tomorrow whenever a bed opens up (you wait at home until they call - nice system), and they will run some tests, procedures, etc. I know that Dr. Moulton is planning on doing a scope so that he can look down her esophagus (and up her other parts - oh my) and see if there are any signs of food allergies. (Apparently they don't all manifest themselves in commonly observable ways.) While she sedate for all that fun, he will place a pH probe in her stomach. It will stay in for 24 hours so that we can see if something is off that might be contributing to the reflux. Then they will feed her through an n-g tube (nasal-gastric tube: nose to stomach; the same tube she had in the NICU for so long) and control her calories precisely and then weigh her periodically to see if she does indeed gain weight when she is getting enough calories. If not, there's something else going on that we need to uncover. If so, they will put in a g-tube, which is a semi-permanent feeding tube straight into her stomach. I say it's semi-permanent because, while some kids and adults have them their entire lives and depend on them for their full nutritional needs, Becca would likely grow out of her need for it in a few years. For now, we would use it to supplement the food that she does take orally so that she can eat what she wants and I won't lie awake at night counting every calorie she took in today (minus the ones she vomited) and brainstorming ways to get that total up to 800. They may also perform a nissen fundoplication, which would keep her from throwing up as much (more on that later if it comes about). I imagine to get this all done we'll be there more on the 7 days side than the 3.
In some ways, it feels like a step back. I thought hospital stays - at least ones that lasted several days - were behind us, especially now that we have made it through 2 RSV seasons without incident. And it feels like we are sending to her an inpatient feeding rehab (which we are), but one like you send severely anorexic patients when they are severely malnourished and have to be force fed and physically rehabilitated before they can begin psychological treatment. Truth be told, I feel like I've let my 2-year-old become anorexic. If I can mess her up this badly this early, what does adolescence have in store for us?
Of course I know she's not actually anorexic. But I think I'm learning the same painful lesson that mother of kids who do struggle with eating disorders learn...and that all parents eventually need to learn, though I'm not sure they all do. I can't make my daughter eat. I just can't do it. In fact (and you would have thought with Becca's personality I would have learned this earlier), I can't make her do anything. Sure, I can forcefully do things to her - like wrestle her on the changing table when she doesn't want to lie down for a diaper change - but I can't make her do it on her own. The truth is that she is a separate person. She is an individual. Becca is Becca and I am me. As close as we are, as much as I love her, and as much as she depends on me (seriously, if I had a dollar for every time she stretched her arms out and said, "MAMA," this week, I'd be dictating this post to my servant), she is her own person, and she is in control of her own body and what goes in it. The odd thing is that this is a lesson that I really want her to learn, but it's not one I want to learn about her. I want her to be independent, confident, clear that she doesn't owe anybody anything with her body, and comfortable with that responsible self-control. But, wow, I want her to do things my way. I want her to gobble up her food and ask for more. I want her to make a mess with her food and smear spaghetti sauce all over her face as she shoves it in. I want her to eat a damn cookie. I want her to eat enough so that the doctors don't cut a hole in her stomach and pour it in. But she won't, or, in other words, because of her health and sensory issues, she can't bring herself to do it. And, in the end, I can take her to therapy 1,000 times a week, I can sing and dance, I can sneak, I can cajole, I can bribe, but I. Can't. Make. Her. Do. It.
Hello, parenthood. Nice to meet you (again).
p.s. The hospital has wifi, so I should be able to keep you updated. Since John or I have to be there all the time, we'd love visitors, but make sure to call my cell phone first in case we are off the floor for tests, etc. Even better if you come bearing some energy to entertain a toddler for a few minutes so we can take a break. I mean, I love her and all, but a mom can only dance for so long before she collapses. :)
Sunday, May 30, 2010
Fire in Her Tummy
My sassy niece Emma has reflux, and she used to tell her parents all the time, "There's a fire in my tummy!" We've known Becca has had a fire in her tummy for some time now. Like most preemies, she's been medicated for reflux since she was in the hospital. We've just been upping her dosage as Zantac as she's grown, hoping that she would simply grow out of the reflux, too. (Most kids do.) As a kid moves from bottles to solids, you usually see less of the characteristic spitting up and back-arching during feedings, so its hard to tell if she is actually still suffering from reflux (at least until she is able to tell you about the fire in their tummy!). So what do you do? You have an upper gastrointestinal study done. Which we did.
It's a simple procedure if the patient cooperates (as our patient did). We put Becca in a gown (huge and adorable), and then laid her in a couple of different positions while she drank some glow-in-the-dark milk (a.k.a. flavored barium). Since she hadn't had anything to eat or drink in 14 hours, she was happy to oblige. They snapped a bunch of pictures to see how the milk moved through her system. They were checking out the anatomical structure of her g-i tract and looking to see if the milk stayed in her stomach once it got there.
The first part was great. Everything went down beautifully, as you can see below (the long dark stripe is the milk going down her esophagus and into the black pouch, which is her stomach):
But here's where things went awry. (Okay, it wasn't that different than we expected, but I wanted to say the word "awry." I lead an exciting life.) This picture was taken after she finished drinking:
See the dark stripe-y thing now? And how it comes nearly all the way up to her chin (the semicircle at the top of the screen)? Yeah, that's not milk going down...that's milk coming back up...milk, that is, that has been in her stomach and mixed with stomach acids and other gross stuff.
No wonder she doesn't like to eat.
I don't know what the next step is; I haven't heard from the GI doc. Maybe we don't do anything until we see him in a couple of months. We still have to collect a poop sample because little missy refuses to poop on a day when we can actually get to Vandy to drop it off. I have a feeling, though, that we have to do a more invasive test now to measure the acidity of her stomach, which involves snaking a very long piece of tubing down her nose and into her stomach and leaving it there for 24 hours. Without sedation or anything. Sounds fun, doesn't it? Nothing we can't manage, though...just another thing to add to the list of procedures - of of things to do over the next few weeks!
Emma's done it before, even multiple times, I think. Good thing...'cause Becca's going to need a sassy girl to sassy girl pep talk! :)
Tuesday, February 23, 2010
Documented Strawberry Miracle
Here it is, folks: indisputable proof that Becca will now eat fresh, juicy strawberries. Well, half of one, at least. She likes to give the other half to the dogs. Works for me! Many thanks to Caroline, Karla, and Cindy for making this moment possible!
Thursday, January 7, 2010
Christmas!
Since Christmas officially ended yesterday with Epiphany, I guess there's no denying that it's time to chronicle our Christmas festivities with Itty Bitty! She was way into Christmas this year; that is, she was way into unwrapping presents and playing with the paper, and I was way into making Christmas special for her. I honestly can't remember a Christmas that was so much fun, simply because I got to experience it through her eyes -- and got to shape that experience! Next year is going to be even better!
Our first Christmas celebration was with my family at Thanksgiving, which was a great way to kick off the holiday season!
Next we celebrated Christmas with John's family the weekend before the big day, starting with...
...the Bethpage Christmas parade! I know I talk about Bethpage being tiny on here, and it is, but, wow, can this town put on a parade! It is truly a sight to behold. I don't know where all these people and their 4-wheelers, old cars (fancy and not-so-fancy), tractors, horses, mules, and -- yes -- side-winding monster trucks come from, but it's a heckuva lot more parade than I ever would have expected, and one of the gems of the Bethpage experience. Becca watched it all from her big red wagon, and she loved the attention from John's family and the church members who gathered in our driveway to watch it (front row seats!).

That evening, we opened presents (lots of them, thanks to Santa Dana!). It would be tough to say which one was Becca's favorite, but she definitely loves her "Rebecca" puzzle from Colin and Jen and her kitchen from Nana and G-Diddy. We were actually going to store the kitchen for a while and pull it out later, but Caroline, our wonderful feeding therapist suggested that we go ahead and set it up so Becca can have fun playing with "food." She likes to walk around with a "hot dog" in her mouth (Becca, not Caroline, that is), and the kitchen even distracts her enough to let me prepare dinner with her by my side. Isn't she an adorable cook? (My favorite present was probably Becca's big girl Britax convertible carseat. She's still facing backwards, but now she's sitting up more and can see out the window. What a big girl!)
After presents, we enjoyed the most massive fondue feast I have ever seen. After much chopping and assembling by all (though we opted not to let Becca chop), we feasted on goat cheese fondue (super yummy!) with bread, veggies, and apples, and several kinds of meat with 5 different marinade/rub options and more veggies, and, after putting Becca to bed, peanut butter chocolate fondue with an array of dessert dippers. It was so fun, and just might become a Hill family tradition - who knows? Santa Dana gave us a fancy fondue pot and a Melting Pot cookbook for Christmas last year, so we used their own recipes - and after all that prep work, I can see why The Melting Pot charges so much! Even with 6 people contributing, it was a lot of work...but delicious.
On Sunday, Nana Dana and G-Diddy kept Becca so that I could actually *gasp* attend church for the first time during Advent! It was so nice to be there, and the sermon wasn't too bad, either. And the preacher is kind of hot. :) That afternoon Jen, Colin, Fred, and I went to see the matinée of The Nutcracker. Jen was a ballerina, and one of the girls she used to dance with is actually a member of the Nashville Ballet Company, so we got to see her dance, which was really cool! It was also special because Jen was in The Nutcracker for about a billion years in Ashland...and that might also explain why Dana and John were so willing to stay home and take care of Becca! :) I love TPAC; I have so many fun memories of going to see different productions there (including The Nutcracker several times - it's a lackadaisical tradition of mine), and it was so special to see all the little girls in their fancy Christmas dresses and/or tutus! They were so excited, and it made me really look forward to taking Becca to see it sometime in the next few years! That evening, we (as we Hills are apt to do) played a few of the new board games that we got for Christmas (yes, more games -- that puts us somewhere around 75 games that we have now!), and then everyone had to head out in the morning.
On Christmas Eve, my parents drove over from Tellico Village, and Dad and I braved the crowds at both Target and Wal-Mart to get a few last-minute presents. (I needed some things for John and decided that my dad had not bought enough for mom...you're welcome, Mom!) Becca's Bethpage grandma, Ms. Mike delivered Becca's Christmas present when we got home - a stuffed hound dog that she had made specially for Becca. Becca loves "Hubba Bubba" (as I've come to call her). She especially loves rubbing her face on her fuzzy "fur," which is very cute. We are so lucky to have Ms. Mike who loves Becca so much - and Becca loves her just as much, if not more!
That evening, my parents babysat so that I could serve Communion at the Christmas Eve service, which is probably my favorite service of the year. It was really special to get to serve Communion again, as it had been months since my last opportunity. After the service, we had the traditional Speas family Christmas Eve meal: hamburgers and chocolate mousse by candlelight. I do not know how this tradition began, and I think that at one point it involved steak and not hamburgers, but I'm pretty convinced that Santa might skip our house if we didn't have this special meal. Becca even wore her fancy red Christmas dress that she didn't get to wear to church (darn germs!).
I begged John to let me open one present after dinner but was de-nied, the old Scrooge. John and I put Becca to bed together, reading the Christmas story from Luke, which was really special. Once she was down, we did a little work to make Santa's job a bit easier...which was really fun!
Christmas morning, Becca woke us up at 8 (nothing unusual about that -- how early do you think it will be next year?), and we opened presents before breakfast. I had cleared out some of Becca's regular toys from the den so that she could easily see what Santa brought her, and I think she was pretty pleased (though the big winner has turned out to be her Little People farm)!
And Dad was pretty happy with his radio-controlled plane from Mom. Too cute.
(By the way, to Dad's credit, he got Mom something very pretty and sparkly, but I decided she needed more presents to open. Mom was pretty happy with her new jewelry, even without the extras.) John actually liked ALL of the presents that I got him, which is really, really rare, so I felt like I had succeeded, and I was pretty darn excited about my surprise Uggs from my parents - yay for bonus gifts!
That afternoon we feasted again, this time a more traditional Christmas meal with my parents and our good friends Rob and Jeannie. Since they are both also pastors, they can't travel for Christmas, either, so this was our second year to have Christmas dinner with them, and it was really special...and it would be even without Jeannie's most amazing chocolate chip bread pudding for dessert. Yum!
And just when we thought Christmas was ending, Becca and I travelled to Tellico Village on the 27th to see my Uncle Doug, who was visiting my parents. (Unfortunately, John had to stay home to work.) Doug's a music minister (and an incredible one at that), so we've always celebrated Christmas with him after the 25th, too. Silly church work. When we were little, he used to pull himself out of bed early on the 25th (after a midnight service!) to catch a flight so that we could all open presents together that afternoon. Now that we're older, we give him a few days before we demand his presence...and Christmas wouldn't be the same without it! My brother Rob and his family came down to see him as well, so it was nice to get to see them briefly, too! Doug, Rob, and I even managed to catch our traditional post-Christmas movie. And then I managed to leave my phone there, so the next day, we trudged back out to the theater (40 minutes away) to get my phone. Oops. Mom and Dad were going to take us somewhere nice to eat that night, but they were full, so we ended up (happily!) at Cracker Barrel...where Becca threw up. Good times. I guess it was good we didn't make it into the fancy restaurant! She wasn't sick or anything; she just vomits during meals about once a week or so (thanks to the feeding issues), though this was the first time it happened while we were out. We cleared out of there pretty quickly and left a big tip! The next morning, Becca and I scooted home just in time for her two therapy appointments.
Phew. It was a whirlwind of a holiday, but a really special one. We got to see a lot of family (though not everyone - we especially missed seeing John's grandmothers!), but still managed to have some special just-the-three-of-us time. I also got to see several of my old friends (as in, from elementary and middle school old), which is such a special treat and one of the significant benefits of living back in Tennessee. There's just nothing like time with women you've been friends with for 20+ years...especially when you are only 29. So thanks, ladies.
It wasn't my typical Christmas - no choirs, no kid-filled pageants, no parties (unless you count the district preacher party), no Christmas cookies, and definitely no snow - but I can say that I experienced the Incarnation in a different way this year. Waiting with Mary, cherishing my baby-turned-big-girl, hugging the necks of family and good friends, seeing the joy in Becca's face whenever she saw "her people" - it all brought it home to me in a different way. I can't say that I was all warm and fuzzy, but I did feel the importance of physical closeness to the ones you love...and that's what the Incarnation is about, right? God coming down to us to hold us, hug our necks, see the joy in our faces...this year, Emmanuel - God-With-Us - came to the Hill house again. I hope you experienced the same miracle as well. Merry Christmas, all!
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 do...so 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!
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 do...so 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, October 11, 2009
Miracle of Miracles
My daughter eats broccoli.
Okay, so maybe by "eat" I mean that she ate two bites and threw 14 bites on the floor. (Yes, I did just count the pieces of broccoli on my kitchen floor.) But if you are one who recalls my many years of sitting at the table long hours after everyone else left until I could stealthily feed my vegetables to my dog finished my vegetables and/or my having to eat my leftover supper vegetables for breakfast the next morning, you know that it is a small miracle that any green at all would pass my offspring's lips.
Tonight's supper was a particularly toddler-esque meal. We tried diced cooked carrots, a la Gerber (floor: 3 bites, mouth: 0 bites). We tried the broccoli (floor:14, mouth: 2). We tried de-li-cious homeade potato soup (this one stayed on the spoon with just a drop on her tongue). We tried whole grain "veggie" crackers, which have very little vegetable matter in them (floor: 6, mouth: 1). We tried a cut-up Gerber chicken stick (floor: 5, mouth: 0). We tried quartered and peeled grapes (floor: 5, mouth:1, mom:2). The score before I brought out the ringer: 33 bites on the floor, 4 bites on the floor. And 1/2 a grape for mom.
Thank God (and Mr. Leo and WIC) for Pediasure and its total nutrition-y goodness.
I admit defeat and bust out the shredded colby-jack. Even her blessed cheese is scorned tonight, though not after she shovels a few bites in.
Oh well. At least the dogs will feast tonight. I mean, just in case John is reading this, at least I will have fun sweeping tonight.
Any advice? She will only let you feed her ice cream or sweet yogurt (like, say, Yoplait whipped chocolate and raspberries). Everything else, she has to finger-feed. Help!
Okay, so maybe by "eat" I mean that she ate two bites and threw 14 bites on the floor. (Yes, I did just count the pieces of broccoli on my kitchen floor.) But if you are one who recalls my many years of sitting at the table long hours after everyone else left until I could stealthily feed my vegetables to my dog finished my vegetables and/or my having to eat my leftover supper vegetables for breakfast the next morning, you know that it is a small miracle that any green at all would pass my offspring's lips.
Tonight's supper was a particularly toddler-esque meal. We tried diced cooked carrots, a la Gerber (floor: 3 bites, mouth: 0 bites). We tried the broccoli (floor:14, mouth: 2). We tried de-li-cious homeade potato soup (this one stayed on the spoon with just a drop on her tongue). We tried whole grain "veggie" crackers, which have very little vegetable matter in them (floor: 6, mouth: 1). We tried a cut-up Gerber chicken stick (floor: 5, mouth: 0). We tried quartered and peeled grapes (floor: 5, mouth:1, mom:2). The score before I brought out the ringer: 33 bites on the floor, 4 bites on the floor. And 1/2 a grape for mom.
Thank God (and Mr. Leo and WIC) for Pediasure and its total nutrition-y goodness.
I admit defeat and bust out the shredded colby-jack. Even her blessed cheese is scorned tonight, though not after she shovels a few bites in.
Oh well. At least the dogs will feast tonight. I mean, just in case John is reading this, at least I will have fun sweeping tonight.
Any advice? She will only let you feed her ice cream or sweet yogurt (like, say, Yoplait whipped chocolate and raspberries). Everything else, she has to finger-feed. Help!
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