Thursday, March 31, 2011

Test Results & Bug Spray

Okay, the results from the blood tests came in, and they DIDN'T show ehrlichia.  The good doc did say that the titers can come back negative early in the illness, so if we wanted to be academic about it, we'd test again in 2 weeks.  Since she's pretty fully recovered now (still tiring quickly, but that's all), that would be cruel to put her through drawing all that blood again just to satisfy our curiosity.  So we'll never know for sure.  I asked him what he thought it was, and he didn't really have a guess.  Darn those doctors who are willing to say, "I don't know!"  (Just kidding, of course - that's actually a sign of a really good doctor.)

But since the whole incident instilled in me a phobia of ticks on my child, I asked him for recommendations on insect repellent, and he magically produced a wonderful handout on just such matters, and another one on sunscreen just for the heck of it.  This, of course, makes me want to break into the office to seize handouts on every possible pediatric topic, like my possessing a sheet of recommendations and warnings will somehow scare away anything that could possibly harm my baby girl.  While the handouts may not be that effective, I did learn a thing or two about the appropriate use of insect repellents, so consider this your Itty Bitty Hill  public service announcement: my paraphrase (or better yet, my "precis," or an homage to Sarah Bayrd) of the American Academy of Pediatrics handout on bug spray:

  • Usually bug bites are just annoying, but sometimes they can make your kid stupid-sick.
  • Don't bother with the non-chemical means of repelling bugs from your kids.  Most of them ain't gonna work.  If you don't want to put chemicals on your kids, that's okay...but they're gonna get bit.  I will admit that they say that repellents made from some essential oils do offer some protection but they are "much less effective repellents" and last less than 2 hours.
  • DEET is no longer considered bad.  In fact, it's your best defense.  Just don't use a spray that is more than 30% DEET on your kids.  
  • DEET levels work kind of like SPF - the more DEET in the spray, the longer the protection lasts.  To quote: "For example, products with amounts around 10% may repel pests for about 2 hours, while products with amounts of about 24% last an average of 5 hours."  But once you go over 30%, there's no additional benefit, so no need to go overboard on the chemicals.
  • Even though I just put DEET and SPF in the same bullet point (did it again now!), don't use products that contain both - the DEET makes the SPF less effective and you may end up overdosing on DEET because you're likely to reapply it more often.
  • If you are particularly concerned about ticks, you can treat your kids' clothes with permethrin, which kills ticks on contact.  Do not apply it to your kids' (or your) skin, just on their clothes, where it will last for several washings.  I'm considering doing this to a few pairs of B's pants and her jackets.  We don't like ticks 'round here, that's for damn sure.
  • Something they recommend that I won't do: "Avoid dressing your child in clothing with bright colors or flowery prints because they seem to attract insects."  Um, too bad.
  • Don't use anything on babes younger than 2 months. And don't spray kids in the face.  Spray your hands and then rub it in their face.  But not in their eyes.  'Cause that's just mean.
  • And I love this one: "Remember, children need and love to be outdoors."  So now that we've made you paranoid, go play outside.  
Speaking of being paranoid...some of you have asked how we're doing after the whole hospital adventure.  I'll say that we are doing fine, for the most part, but I definitely think that Becca and I are a little jumpy still.  (John Hill continues to be impervious to worry, though I think he's really just delegated it to me.)  When we were listening to the president's speech on Libya on Monday and heard him say "hospital," Becca picked up on it and told me that we were going to the hospital.  (Interestingly, she wasn't upset about it at all.  Hospitals are just places you go every now and then.  And sometimes you get free blankets there.)  But she freaks out when I say that we need to do something quickly and says, "No tick!  No tick!" because quick=tick to her ears.  And I nearly had a panic attack after scheduling Becca's first date with a teenage babysitter as I immediately pictured everything that could go wrong.  (Logically, I can tell you that the far likeliest scenario is that everything will be absolutely fine and that the next likeliest scenario is that something will happen but the babysitter, a very responsible high school senior, will handle it beautifully.)  But I think the jumpiness is natural, so I'm trying to give myself grace about it.  And I'm saying "fast" instead of "quick" around Becca.  :)

Saturday, March 26, 2011

Our First Ambulance Ride

Wohoo!  I first I was hoping would never come...

I have a migraine and it's been an awfully long week/end, so I'm going just the fact on you here.  Perhaps I'll add some reflection later. 

Last Friday, Becca had 2 ticks we pulled off of her.  Saturday, she had another.

Becca threw up on the way to therapy on Wednesday morning.  She'd started getting a little cough and threw up.  Not altogether odd, but a little unusual for it to happen in the car.  And really gross.  Big props to Miss Ashley for helping clean her up.  Probably not in her job description.

Thursday morning, we got Becca up for school and found that she had thrown up in the middle of the night and slept in it.  Ew.  Again, a little unusual, as she usually wakes up.  Just as we were walking out the door on Thursday morning, she threw up again.  A pain, but not unusual because she was coughing.  She went to school (this is so common for Becca that it doesn't keep her out of school), we went to work. 

I pick her up at school at 3.  Her teachers mention that she threw up her bolus feed (again, not unusual - but I'm noticing a pattern here) and that her eyes had just started to look a little red.  Almost everyone in her class (including both teachers) have had pinkeye in the past week, so they thought Becca was finally catching it, too.  As I held her, I noticed that she felt hot, so we took her temperature - 101.5.  I got the heck out of dodge and called the pediatrician so they would know we were on our way.

We get to the ped and thankfully our regular doctor was in.  (God bless Mark Rawls.)  Of course, they take her temp, and she doesn't have a fever, but she has lost 3 ounces since the day before.  I give him the story, he examines her, she throws up all over me, she acts SUPER puny, he gets concerned in that I'm-not-going-to-worry-the-anxious-mother pediatrician kind of way.  I didn't realize how concerned he was until I asked him about a general developmental thing and he saids, "Let's not worry about that right now and focus on the illness at hand,"even though he's always willing to discuss developmental stuff ad naseaum with me. 

He was particularly worried about the tick bites and went back and forth about whether we should do labs, start antibiotics or both.  We opted to start the meds and do the labs, which would not be definitive for tick-borne illness (hence the question in whether to both with them if we were going to treat anyway), but could show us some common indicators for ehrlichiosis.  (Google it and pick a reputable website.  I'm out of energy to do it for you.)  We had the blood drawn, which was miserable, and Becca cried for the next 45 minutes while we made our way over to the children's hospital to pick up the prescription b/c regular pharmacies wouldn't have it.  There's a problem with the insurance, etc., we can't get it until the next day unless we pay out of pocket, blah blah blah.  So I shell out the cash and get the heck out of dodge. 

Becca actually asked to eat (!!), so we stop for dinner and our friend Emily joins us.  Becca's actually happy for the first bit of dinner (she LOVES Emily), but then she gets super-fussy.  While we're eating, Dr. Rawls calls (that rhymes!) and says that he's glad we're doing the medicine because her labs are suspicious - platelets are low, one kind of white blood cell is high and another is low, liver enzymes are elevated (which she has a history of).  Of course, she hasn't actually started the antibiotics yet because I don't have the right syringe to fit into her Mic-Key button, and she's sure as heck not going to take it by mouth.  Oh, and even though she asks, Becca doesn't actually eat much of anything. 

We head to the car, and Becca perks up.  She's happy to be outside, says goodbye to Emily approximately 25 times, starts singing.  We're halfway home (from Green Hills for you Nashville folk), and she's still singing "Happy Birthday" to Emily (which we sang to Emily 3 weeks ago).  It's dark by now, after 7 pm, and at some point she stops singing.  At exit 65 (Hwy. 96), I notice that her right arm is sticking up at an odd angle, and I reach back to hold her hand, and it's rigid and shaking.  She won't answer me, and I can't really see what's going on.  I can't pull over because I'm in the middle of a major construction zone.  It's raining a little bit.  I know there's some places I could cross the median and head back towards the hospital but I can't see them.  I end up talking to her, trying to get her to respond, holding her hand and calling 911 while driving a.l.l. t.h.e. w.a.y. to the next exit, #61 (Peytonsville Rd./Goose Creek). 

I pull into the Shell parking lot.  I want the 911 dispatcher that my phone is about to die and have them have someone call John and tell him to meet us at the hospital.  My phone dies.  Becca has stopped seizing by now, but she's still non-responsive.  She's breathing fine and her color looks okay, as far as I can tell in the dark parking lot, but she won't answer me or look at me.  I panic slightly, trying to find somewhere to park the car that doesn't have a tow away sign (funny where my anxiety goes, isn't it?), park, and pull her out of her seat.  I start throwing things in bags (I carry a bunch of crap in my car), keep working with Becca, and wait for the ambulance, which arrives after just a couple of minutes. 

My new best friend, Amy, and her partner check Becca out, see that she's stable, send the firefighters away when they get there with their siren blaring.  Check her blood sugar - 95 - beautiful.  Check her O2 sats - fine.  Pulse - fine.  Responding some but definitely NOT acting like Becca.  They ask if I want to use our carseat or theirs, so I grab ours.  (How weird is that to think about?  They put her in her carseat and hooked the carseat to the gurney.  Makes sense, but odd.)  Nice EMT guy whose name I don't know tells the gas station guys not to tow my car.

We make our way to the hospital (25 miles or so?) without the sirens, which I learn you only get if you are dying.  No thanks.  I borrow dude's phone to call the pediatrician and almost yell at the answering service when they keep asking their usual inane questions ("what's her approximate weight?  R as in rabbit, e as in elephant, b as in boy..." etc.) and tell them just to page the damn doctor and tell him that we're on our way to the emergency room.  Becca is distraught at this point, but Amy and I finally get her to calm down a little bit to sing her favorite line - "aaaall true da town" in "Wheels on the Bus" in between tears.  Super pitiful.  As we pull in to the ambulance bay, Dr. Rawls calls the guy's cell, and I tell him the whole story in what turns out to be the first of about 1,400,032 renditions of it.  No, that's already the third because I've already told the dispatcher and the EMT's. 

John's out in the waiting room at this point and I ask the nurses to go get him but they keep asking me questions while he just waits out there.  Annoying.  He always makes Becca happy and I'd kind of like to see him at this point, too.  You've got about 15 people just standing around who could get him. 

Oh yeah, Becca threw up in the ambulance, too.  And another time while being checked in.  And another time.  And one more time, I think.  I'm still wearing my vomity clothes from earlier anyway.  She's had a slight fever when the EMT's got her, so they tried to give her Tylenol and she throws it up.  (Fever's only 99.9, so it doesn't seem like a febrile seizure, which are not caused by high temps but by quick spikes in temps, but with one that low it couldn't have "spiked" all that quickly.  And I think the kind of seizure looks different or something like that.)

But back to the hospital - we see a million doctors, but there's no mad rushing around or anything.  She's definitely stable at this point, though definitely not well.  The nurse tries to tell me that I can't hold her while they put an IV in, which I tell her (in more polite terms) is total bullshit and I will be holding her, thank you very much.  (Do I hear a cheer from my child life friends?) 

We get a Mic-Key button extension and give her the first dose of the antibiotic.  ER doc is also thinking that it could be ehrlichiosis.  It's rare to have such a serious reaction but it's certainly not unheard of; in fact, every year a few kids in Tennessee die from it.  (One of my dear reader's child had a very severe case of it last summer, in fact - Valerie, I've been thinking about you guys for days now!)  Even though she's stabilized now, they want to keep her for a while to observe her in case this is the beginning of things going very badly very quickly, as it's known to do with kids her age exposed to ehrlichiosis. 

Flashing back to the night that I spent in the ER in the CRIB with Becca last summer, I immediately start lobbying for a cot for me.  (The cots are awful but definitely better than the crib.)  Of course, the hospital is full, like it always is (build the darn expansion already, please!  Donors, do you hear me?) but they think they maaay be able to get us a room.  Such a tease.  I do try to make the case, though that after you've spent 150 nights in the hospital, you ought to get bumped to the top of the bed board.  We don't get a real room, but we do get bumped over to the observation area, which is much nicer than the ED - it's bigger, we share a bathroom with the folks next door instead of using the emergency bathroom in the hall that gets REALLY gross as the night wears on, and Dr. Rawls will be our attending instead of the ER doc (who is lovely but doesn't know my kid).  I get a cot, but I do end up spending a couple of hours in the crib b/c Becca keeps waking up thoroughly confused (of course). 

I've pushed for them to start her feeds or to give her the very strong sugar water IV fluids so as to avoid a repeat of the Emergency Department Blood Sugar Debacle of 2010, so they get her milk and get it going.  She doesn't have to be hooked up to any monitors or anything and the residents on duty assure me that I'll wake up if she has another seizure.  They just want her to be at the hospital in case anything does happen, which sounds like a good plan to me.  We deal with logistics: John swings by Mapco to get me some essentials and heads home to take care of the poor pups who have now been in their crate for 14 hours.  (Mental note: give housekey back to our key-keeping friend, KCC.)  Mark and Marne (from church) have brought John's car to the hospital (Carol dropped him off b/c they were all at a dinner together), and we send them to get my car from the gas station and take it to their house.

Becca and I have a blessedly uneventful (though definitely not restful) night.  I ask the residents if they can find a stuffed animal or soft blanket for her since we don't have any of her loveys with us - silly me thinking the docs would have any clue about this.  Eventually, I ask our Care Partner (m.a.), Princess, for one, and she finds a hot pink/zebra stripe supersoft fleece that will forever be known as Princess Blankey.  Rock star! 

In the morning, I keep expecting doctors to wake us up at 5, but we don't see any until close to 7:30, and Becca even slept until about 7.  They do their assessments; all clear.  Dr. Rawls comes by a little after 8, and the scene is much like the first time we met him after Becca's g-tube surgery- Becca and I are cuddled in the bed while she dozes and he sits in the rocking chair, which I remember because I liked that he didn't stand over us and talk at us.  Good doctor.  He wants us to stick around into the early afternoon to give the antibiotics more time to work (got the 2nd dose that morning) and make sure she's still improving.  By noon, Becca is almost totally herself again, and I'm begging the nurse to call the residents to discharge us.  (We'd already gone on a few hospital adventures and when John got back and took her on a walk, they even saw Miss Melissa!) 

The orders come through and we have the easiest discharge ever.  The nurse (Hope - who is awesome) encourages me to hold Becca while they remove the IV.  Becca's now covered in Dora Band-aids not because she is covered in boo boo's but because she loves Band-aids, and I had happened to buy a box at the pharmacy, so with every unpleasantness she got a new Band-aid.  She still won't let us take them off.  ("Leeb it oooooon ban-ai!") 

Becca falls asleep on the way home and climbs into bed as soon as she can.  She sleeps for 4 hours.  I get home little bit later (stopped to get my car and pick up some food) and also sleep for 4 hours.  She and I repeated the pattern this morning - the nap that is, not the hospital run.  She's been pretty pitiful and puny today; she obviously still doesn't feel very good.  She threw up last night (like normal) and after her bath this morning, she REALLY didn't want me to brush her hair - hiding it under a hat from me and everything - so I'm thinking her head was hurting. 

So - what did/does she have?  It could be a random virus.  It could be ehrlichiosis.  It could be both.  They drew blood to run tests for ehrlichiosis but they won't be back for a few days (that's why we didn't run those tests to begin with - you've GOT to start the antibiotics before the results come back anyway).  Will she be okay?  Should be, even if it is erhlichiosis.  The antibiotics are pretty awesome (doxycycline).  Will she have another seizure?  Maybe.  It could be the seizure activity is isolated to this particular illness.  It could be that she'll be prone to having seizures when she's sick.  If that's it, most kids grow out of us by the time they are about 5.  There's a very, very, very small chance (maybe 5%) that she has a form of epilepsy, but unless she has another seizure, we're not even going to see a neurologist.  We do have a prescription for an emergency medicine to give her if she has another seizure, but Dr. Rawls thinks that we won't need it - he wasn't even going to write it for us, but the residents did, and he agreed that it's a good thing to keep at home, though we don't have to mess with taking it to school, training all her caregivers, etc.  (Thank goodness - we're about to get so complicated that only nurses can take care of her!) 

Here's the bit that I find oddly encouraging: Dr. Rawls said that nothing they did for her was based on her history.  We may have acted more quickly because of her history, but they would have essentially done the same thing for any other 2.5 year old with the same issues and a recent tick bite.  So this was actually a regular old kid illness, not a preemie thing.  How 'bout that?!

Monday, March 21, 2011

Becca Ou-shide!

This bit of adorableness brought to you by Nanny Hitchcock, who gave Becca the cute shirt, Mary Farris, who passed on the ridiculously fun pig squeaker shoes, and our amazing physical therapist, "Miss Ash-ee," who taught Becca how to kick a ball.  Enjoy!

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Saturday, March 19, 2011

"Wednesday" Weigh-In

Wednesday, Saturday, what's the difference?  :) 

Last week: 10.00 kg (22 pounds, 1 ounce), 32 inches
This week: 10.05 kg (22 pounds, 3 ounces), 32.75 inches
Week's change: +50 grams (2 ounces), + 0.75 inches
Net change: +2350 grams (74 ounces = 4 pounds, 12 ounces), +3.75 inches

These measurments were taken at the endocrinologist's office, so we may seem some fluctuation on the weight next week as we move back to our regular scale.  And I'm quite sure that we'll see some fluctuation in the height, too, because that's how we roll, apparently.  I do think that this is probably the most accurate height measurement we've had in a while.  Since endocrinology follows many kids specifically for growth concerns, the nurses in that office are very well trained in taking height measurements.  They've also got slightly different equipment that I think is more accurate.  So, all of that is to say that Becca is indeed NOT on the growth charts yet, but she's making some great progress. 

When we started growth hormone shots last summer, Becca was 3.79 standard deviations below average (a.k.a. the 50th percentile line).  (If you don't know what standard deviations are, sorry, but I don't really know how to explain them.  Just look at the numbers and be impressed.)  After nearly 9 months of therapy, she has bumped up to 2.45 standard deviations below average.  The 3rd (Or is it 5th?  Crap.  I think it's 3rd.) percentile line is 2.0 standard deviations below average.  So she's getting much, much closer!  Maybe in another few months, she'll actually be on there!  She is at least no longer falling off the bottom of the paper, so that's better. 

Becca is having a harder time with her daily shots, though.  As hard as it is to see her upset, this is probably a good sign, because it (probably) indicates that her sensory integration therapy (OT) is kicking in and she's feeling pain more.  Yes, that sounds crazy, but it's a good thing that she can sense pain.  After consulting with my friend Bekah, who is a preemie mama and a Child Life Specialist at Vandy, we've started giving Becca a Band-Aid after every shot.  The needle is so tiny that 90% of the time she doesn't need one, but she LOVES "bannai," so getting to pick which one she gets (right now it's Elmo or Pooh Bear) and getting to help put it on is a big deal.  It not only distracts her, but it also empowers her a little.  She doesn't have a choice in getting the shot, but she can choose her Band-Aid!

Friday, March 18, 2011

Biker Chick!

Looks like Becca doesn't need Mama anymore to be a biker chick!  She's got wheels herself, and she knows how to use them!  Big, big, big thanks go out to Mr. Kyle, Miss Ashley's (our PT's) husband, who specially adapted this tricycle so that Becca could have a bike just like the other kids her age - and still reach the pedals!  Ashley and Kyle are into cycling (Ashley's actually the one who got me into this triathlon mess :) ), Kyle's an engineer, and Ashley (obviously) works with kids with special needs.  Put them together and, voila!  Ashley and Kyle are a part of a non-profit that works to get adapted bikes to kids that need them.  We were honored for Becca to be their guinea pig.  Kyle essentially stacked the pedals so Becca could reach them and attached velcro straps that wrap around her feet so that she'd have some extra help as she pedaled (much like fancy pedal clips).  He also added a bracket so that he could move her seat up farther.  It means so much to me (and to Miss Ashley!) to see Becca learning such a "normal" child behavior!  Pretty soon, we'll be riding side-by-side (though Becca and I both still love riding together on my bike)!  As Becca says at the end of the video, "Thank you Mr. Kyle [and Miss Ashley]!"

(Sorry about the crappy cinematography.  An uncoordinated camera lady walking backwards while filming on a phone does not good video make.  But I think you get the gist of it!)
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Monday, March 14, 2011

The Big Reveal

If you read this blog regularly, I'm pretty sure that you'd LOOOOVE to have a t-shirt like this:

Pretend with me, if you will, that the background is all the same color: Gildan's Blue Dusk t-shirt, which seems appropriate for Becca's astronaut t-shirt.  I'm still working on getting this design in a usable format for the t-shirt guy (a.k.a. THE Chuck Catterton).  If you are a design genius (or at least an advanced beginner, which is way ahead of me!), let me know if you'd like to lend your brain cells to this problem. 

But here's your chance to become a card-carrying (er...t-shirt wearing?) member of Itty Bitty Becca's Team 2011!  Like last year, we're selling the t-shirts to raise money for our March for Babies team.  Each shirt will be $15, and we'll kids - adults (XXL at least) available.  I'm still working out the details, so bear with me.  (Kids' shirts may be a few $$'s cheaper, and I may be able to set up a PayPal account to accept t-shirt payments instead of sending checks like last year.)  About 1/2 of the purchase price will be a donation to the March of Dimes, and I'll provide you a receipt for that portion.  (The exact amount depends on the final quantity and cost of the shirts.) 

What I need from you now, though, is your orders!  Please leave a comment (or send me an e-mail) with the number and sizes of shirts that you will need.  I'm placing my order based on your orders (since we can't afford to hang on to a lot of inventory), so you've got to reserve your shirt in order to get one.  I'm happy to mail them to you, but I'll have to charge you for postage - I'll give you a more specific amount when I start collecting checks, but I think it was about $2 a shirt last year.   

Last year we had people in at least 8 states wearing Itty Bitty Becca shirts - how cool is that?!  Let's see if we have have even more states celebrating the "aaah-naut" Becca and spreading the message about preemies! 

And this year we've got a new t-shirt opportunity!  This design will be on the front of the shirt, but we are signing up team sponsors who will have their logos on the back of the shirt!  For $150, your company, organization, etc. can be an official sponsor listed on the team shirt.  OR - for $200, your company can have a route sign along the March for Babies walk route, where it will be seen by the thousands of walkers - last year, we had 6,000 participants!  OR OR - if you love a great deal, like I do, for $250, you can get on the back of the shirts AND have a route sign!  The entire sponsorship fee is tax-deductible.  If you are interested, leave me a comment or send me an e-mail to SpeasHill (at)

Of course, if you'd prefer to skip the t-shirt and make a donation directly to our team, visit

Thanks, and let me know if you have questions!

p.s. Sorry I've been so lackidasical about blogging about the actual Becca.  Work has been crazy and, oh yeah, I started training for a triathlon.  And I'm co-chairing Vacation Bible School this year because I'm a little bit crazy.  And I'm loving it all.  But I will try to get you some Becca updates (and pictures!) soon!

Wednesday, March 9, 2011

Wednesday Weigh-In

Told ya we wouldn't stay on the charts!  Still, I didn't expect her to shrink TWO INCHES!  You'd think measurements would be a fairly exact science.  Apparently not.  Her weight gain was good, though!

Last week: 9.85 kg (21 pounds, 12 ounces), 34 inches
This week:  10.00 kg (22 pounds, 1 ounce), 32 inches
Week's change: +150 grams (5 ounces), -2 inches
Net change:  +2300 grams (74 ounces = 4 pounds, 10 ounces), +3 inches

We go to endocrine next week, and they are really particular about measuring her height, since they are the ones really looking at her size.  Should be interesting to compare!

Monday, March 7, 2011

Off the Charts... where we usually fall.  But check this out:

Yes, ladies and gentlemen, for the first time in her life, Itty Bitty Becca is ON THE GROWTH CHART FOR HEIGHT!*  6th percentile!  Wohoo!  That means that she's taller than 5% of other kids her actual age!  Now - this measurement was taken at her weigh in last Wednesday, and you've heard me talk about how these measurements are not exactly scientific.  This particular measurement had Becca growing an inch in a week, so it's probably a generous measurement, but, still she's been trending upward relatively sharply lately, so even if she drops off the chart this week, I expect she'll be back on it soon.  

Seriously, y'all, this is crazy awesome.  When I say this is the first time she's been on the chart in her life, I mean LIFE in the most pro-lifer sense you can imagine.  Her very first measurements were taken at 8 weeks gestation.  She was a little smaller than expected then, so they adjusted my due date to 4 days later, even though I can still tell you to the hour the day that she was conceived.  (Don't worry; I won't.)  So she was essentially 4 days too short then.  (Normally, I wouldn't think of an ultrasound that early being behind, but since a few weeks later she was significantly behind, I think (in retrospect) we were seeing her poor growth pattern that early.)  At 17 weeks, she was a full 2 weeks behind.  When she was born at 28 weeks, she was 9-10 weeks behind on length (and slightly less behind on weight and even slightly-er less behind on head circumference).  

And of course, since she formally became a baby, she's been off the charts.  Literally.  As in, if you tried to plot her height and weight (particularly height) on a standard growth chart (or on one for preemies that has the 3rd percentile line marked), there are not lines on the graph on which to put her dot.  (And I don't mean the growth curve line.  I'm talking about the actual grid.)  

But here she is, standing tall at 34 inches and ruling the 6th percentile!  Take that, IUGR!  And big thanks to you, growth hormone "pokes"!  Her weight is still waaaaay down there (note in the photo that it says "< 3rd percentile" - that's the lowest interpretation they put there - so it doesn't mean that she's in the 2nd percentile or anything).  She's in 9-12 month clothes on weight but 2T in height, and that does make finding clothes for her challenging, but heaven knows I've managed to assemble a wardrobe with 1 or 2 things in it for her.  :)  But still...

Watch out, world.  Becca Hill just may hit 5 feet yet!

*She's been tracking in the very low percentiles for head circumference for a while now - that's the asymmetrical part of her asymmetrical intrauterine growth restriction.  

Wednesday, March 2, 2011

Wednesday Weigh-In & GI Update

Last week: 9.9 kg (21 pounds, 13 ounces), 33 inches
This week: 9.85 kg (21 pounds, 12 ounces), 34 inches
Week's change: -50 grams (1 ounce), + 1 inch
Net change:  +2150 grams (69 ounces = 4 pounds, 5 ounces), +5 inches

Becca was sick over the weekend with another NSVI, so the weight loss is not unexpected. (NSVI = a non-specific viral illness, which means that the docs don't know and don't need to know what it is because it's not very serious and they knowing would change the course of treatment.  We've had several of these this winter.  I think it's amusing that there's a technical name for it.)  She's still a little puny but doing fine and no longer contagious, just a little more, um, opinionated and tired than normal.  

The second half of last week and this this week have been a little crazy as I've had to work with several of Becca's care providers and suppliers in order to get things straight.  (Yes, Becca has suppliers.  And we had to switch some of them around due to insurance changes (not doctors, just her dealers).  It reminded me of why I'm not working full-time these days!  We also ended up in a feeding supplies crisis, as we still don't have the feeding bags that we needed on Monday, 'cause, hey, we don't REALLY need them every night, do we.  (We do.)  Super friend Mollie helped me out and saved us from having to wake up every couple of hours to bolus feed the tube-fed princess.  

We did finally connect with the GI folks.  I spoke with a nurse who was either consulting directly with Dr. Moulton or is at least smart enough to say that she was.  :)   After a good bit of trouble finding a pharmacy that would work with use (see above), we have now started Becca on the compounded generic formulation of Prilosec.  (Compounding just means that they take the solid medicine and make it into a liquid.  Only certain pharmacies do it and only certain compounding pharmacies file insurance claims for those meds and only certain methods of compounding are covered by TennCare.  These are things I learned this weekend.)  We were able to dissolve the Prevacid solutabs in water and give them to Becca because the little balls of medicine (like the ones that are in the adult capsules) are designed not to dissolve.  We couldn't crush it up and put it in applesauce or any other food that consistency because she doesn't eat those foods.  She has taken a few bites of applesauce in her life, so we did try that and she gagged on it and puked...which made for a negative association with applesauce in general.  Awesome.  Besides, the Prevacid didn't seem to be working anyway, since even when we could it get in her, she still usually threw up another time during the day.  The liquid Prilosec apparently tastes really gross (to Becca), so we shoot it directly into her button.  It's kind of a funny process - we measure her 5 ml's in a small syringe, squirt it into a big syringe, add an adapter that fits into her button (which the small one doesn't have), and squirt it in.  But hey, she's not gagging on it and throwing up!  Actually, she is still throwing up, but not from the medicine, and it's only been a couple of days on it.  I'll keep you posted!