Look Ma, No Hands!

Becca is getting more adventurous in her exploration of food textures (particularly if there is chocolate involved), but she's still not a fan of getting her hands messy.  Exhibit A:

 

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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!

Developmental Update

Okay, I know I've been slacking on giving you actual information about our rock star preemie.  We've had a lot of assessments and change over the past several months as Becca turned 3, so let's rewind back to the spring, as we approached her birthday.

Becca received Early Intervention services from the time she came home from the NICU to her third birthday, and they made a TREMENDOUS impact of her development and our understanding of the ways we could encourage her to meet her milestones, albeit at her own pace.  Early Intervention is a federally-mandated, state-sponsored program, and it is worth every penny our taxes put towards it (and could use a lot more pennies thrown that direction).  Without it, Becca never would have made the progress she has made, and it's even more important to other kids whose parents aren't able or willing to go to advocate and care for them the (very difficult) way that kids with special needs require, because the Early Interventionists are able to (somewhat) step into that role and equip parents to, well, parent better.  So, we are fans of Early Intervention.

But once you turn 3, if you require "services" (therapy and/or special instruction), you are the responsibility of the public school system.  So beginning in January, we began transition meetings with the Williamson County school psychologist.  A few months later, Becca had a whole battery of assessments: one morning the psychologist and the speech therapist double-teamed; another morning the physical therapist and the occupational therapist worked with her.  We then had several meetings with me and John (and Becca), the psychologist, an OT, a PT, a SLP (speech/language pathologist), an early childhood special education teacher, and either the school principal or assistant principal.  These meetings were...difficult.  And at times, not-so-professional.  And definitely not family-friendly (like most everything in Early Intervention is designed to be), meaning that everything was at their convenience, on their schedule (or re-schedule), and flexible only on our end.  We even had to pull Becca out of therapy one morning to have a meeting about how Becca needs therapy.  Ridiculous.  BUT - in the end, we were (and are) VERY happy with the Individualized Educational Plan (IEP) that we have in place for Becca.  Here's what it includes:

• Physical therapy:  Becca's biggest area of delay continues to be gross motor (motor skills that use the big muscles, like walking, running, jumping, climbing, etc.).  At her assessment, Becca was 34 months old, and she scored 20 months in this area, so she obviously need physical therapy, which she will get at school 20 minutes a week.
• Occupational therapy: Occupational therapy mostly works in 2 domains: fine motor and sensory processing.  In her fine motor assessment (again at 34 months), Becca scored 28 months, which is actually considered the very bottom edge of normal, though there's still a delay.  However, we know Becca's sensory processing shows significant dysfunction, as she demonstrates "over-responsiveness to visual, auditory, touch and oral tactile forms of sensory input that impacts her ability to attend to task in busy or noisy environments, impacts her ability to participate in daily functional activities at home and at school, and impacts her readiness to learn;" "sensory seeking with visual, auditory, proprioceptive and vestibular forms of sensory input that also impact her ability to attend to task;" and "decreased perception of proprioceptive and vestibular sensory input.  Combined with her gross motor skill delays, this impacts her balance and coordination along with her higher lever motor planning skills."  The OT's rec?  "Becca needs consultative OT services integrated into the classroom."  Which won her a place in the...
• Early Childhood Special Education classroom:  While Becca was somewhat borderline in whether she qualified for services because of her strengths in the communication and cognitive domains (talkative genius that she is), she qualified for classroom instruction because of the ways that her particular delays impact her ability to access the classroom environment, appropriately attend to task and progress towards kindergarten readiness.  I was really happy that she qualified for classroom services because it is SUCH  a great program, and we L.O.V.E. Ms. Jamie, her teacher.  More on how the classroom program is structure below.
• Transportation to and from school:  Yep, she rides the short bus, and we're so proud of it! 

What it doesn't include:

• Speech therapy: Becca is no longer delayed in her receptive or expressive language.  In fact, at another round of assessment at the NICU follow-up clinic, when Becca was 36 months, she scored 42 months on expressive language.  That's my girl! 
• Feeding therapy:  Because everything done through the school is focused purely on helping the kids success from an educational perspective, they do not provide feeding therapy, I guess because you can be fully tube-fed and still participate in the educational process fully.  Not that it's totally disconnected; the sensory work they do in OT especially can help make progress in her sensory-based feeding issues. 

So, what is Becca's schedule like these days?  Well, on Monday, Tuesday, Thursday and Friday, she's in school from 8:30-11:30.  They have a morning and afternoon session, and Becca is in the morning session, since she (theoretically) still naps in the afternoon.  (You get to do one or the other.)  Wednesdays, they don't have class so that the teachers and therapists can do assessments and IEP meetings.  On Wednesday, Becca and I head out to her private PT and OT sessions anyway, so that worked out for us.  (But, yes, we are still going to PT, OT and feeding therapies at Vandy in addition to the school therapies.)  It's frustrating that the program schedule is SO not working-parent friendly, and Becca's teacher even said in one of the meetings the she wouldn't have been able to participate in a program like this as a kid because her parents both worked.  But part of that is a function of the community we're in, where there are many families who have one parent stay home with the kiddos - but it's living in this same community that makes being a part of the awesome program possible. 

And the program is awesome.  Half of the kids are on an IEP (a.k.a. have special needs) and half are peer models from the community (a.k.a. normal kids - by the way, it's FREE preschool for these kids, and I don't know why everybody doesn't put their kid in this program, particularly if the schedule does work for your family!).  There are always four adults in the classroom: a teacher, two teacher's aides, and one therapist.  The therapist alternates between speech and occupational because both of those disciplines provide integrated services, meaning that they build the therapy into the classroom program.  (The PT pulls Becca out for her session.  It's have to practice walking on a balance beam, climbing and jumping with 13 other 3-year-olds without it becoming pure chaos!). 

Everything they do in school is coordinated, but in such a way that the kids don't notice or feel confined. They work on 2-week storybook units, meaning that they base their different activities on one book for two weeks.  For example, they have been studying The Kissing Hand, which is a really sweet book about a little raccoon who misses his mommy at school, so she kisses his hand so that he always has her love with him.  So in OT, they stuffed "raccoon tails" (tube socks) with newspaper and painted them.  In art, they made a little raccoon mask.  In dramatic play, they wore their masks and tails and pretended to be raccoons.  Another time in art, they made trees by drawing rectangles for the tree trunk (because the rectangle is the base shape for the letter of the week, which was "F") and glued cotton balls on the top for the leaves (an activity Becca is averse to because it involves getting glue on your hands).  It's just so well thought-out!  So, like I said, it was a little frustrating getting there and working out the scheduling logistics so she can go to school and I can work, but it is so, so, so worth it.

And we're still busy outside of school.  Monday afternoon, she gets a super quick nap/rest time in before we head out to feeding therapy, and on Thursdays (starting this week), we'll go to ballet in the evening.  Add in Wednesday therapies and weight check and the regular Sunday/Wednesday church schedule, and she's one BUSY little girl!  And I'm one tired mama...but, thankfully, we've got a great Team Becca, including SuperDad, her second family (the aforementioned Lovells), and a new SUPER babysitter who - get this - used to play Mickey and Minnie at Disney World.  I mean, really, could you have any better credentials for playing with young kids?  :) 

We're slowly getting adjusted to the new schedule and working out some of the (pretty major) kinks - and relying heavily on the loving hands at church to make this whole mom's a pastor-dad's a pastor-Becca's got special needs charade work.  And after I had to steam clean the youth room carpet after Becca disconnected her tube feeding while "napping" in there while mommy and daddy worked, we're having to think creatively about scheduling.  But we'll get there.  And we're accepting any and all advice.  :) 

Here are some pictures of the big elementary school student!

"Bye bye, Mommy!"

"Tan I go NOW?" 

Time for one more goodbye on her first day

There's the short bus, dropping her off right in front of our house!

So tired after school - "No picture, Mommy!"

On Therapy

One of Becca's old therapists is giving a lecture on working with pediatric patients and their families, and she asked me if there was anything I'd like to pass on to a group of aspiring therapists.  Apparently, I had a lot to say, so I thought I'd share it with you.  Preemie/special needs parents, what else do you have to add?

So here's my advice to therapists, which is also fairly applicable to nurses, now that I think about it.

Balance the professional and the personal.  We've had some sessions in which I've felt like the therapist and I interacted more than Becca and the therapist.  But worse was the therapist we had that was SO "professional" that it was completely isolating.  I didn't feel like I was involved in her therapy at all.  I sometimes wondered if I should just wait in the lobby - Lord knows I could have used some downtime for myself and a book!  I know absolutely nothing personal about that therapist to this day.  (And if I'm completely honest, I'll admit that I'm petty enough that it at times affected my implementation of our home therapy program.)  Being the parent of a preemie is SO SO SO isolating.  Remember from September through March (or whatever RSV season is in your area), family, doctors, nurses and therapists -- and maybe a few close friends -- are essentially the only people we see and interact with on a regular basis. Seriously.  So be friendly with us, even if you can't/don't want to really be friends with us. You are our support system.  I mean, I don't need to know about the fight you had with your boyfriend last night, but I love knowing that you've got, say, a daughter the same age as Becca or a kid in college or a pair of pugs that are the light of your life.  Give me something to humanize you and make me feel like we are partners in our efforts.  (Note: if you do have a child about my child's age, DO NOT compare their abilities.  We do that enough already and don't need your help in that area.)

Know that therapy fatigue is real.  Most of these kids will be in multiple therapies each week, each with a home therapy program, likely alongside lots of medical needs.  Let us know what we need to be doing, but prioritize.  We can probably only manage about 2 assignments a weeks.  If it's appropriate, give us permission to sit in the lobby occasionally.  Most likely we'll want to be in the sessions, but every now and then a break is an amazing treat.

Work together with us on goals.  Don't just make them up on your own.  At least run them by us and see what our priorities are.  With all due respect, I know you are a professional, but in the grand scheme of things, what matters are MY goals for my child (and if they are old enough, their own goals), not your goals.  Therapists come and go, often frequently, but we're the ones raising this child.  Provide a written copy of the goals (whether it's hard copy or e-mail) so that we can remind ourselves of them and share them with other parents, caregivers, etc.  

Help us work with the doctors.  Sometimes you are able to get access to them that we are not able to get on our own.  Sometimes you can express our concerns to them and they will be received differently (and taken more seriously) if they come from you.  However, remember that we are the experts on our children, not the doctors. 

I can't believe I have to mention this, but it has happened on more than one occasion: if my child makes some kind of artwork/picture/design/anything on paper during the session, DO NOT THROW IT AWAY IN FRONT OF HER.  Even if it's a mess of shaving cream on construction paper to you, to them it's a work of art that they are proud of.  Set it aside, and when I don't take it with me, toss it - but not in front of the kiddo.  They notice these things, even at age 2.  Becca even requests that her pictures goes on the wall (we have a special frame) or on the fridge.  Sometimes she puts them up herself.  She knows that what you do with a picture is a commentary on it.  So respect her efforts and her feelings, please.

And in general, if we are a little high maintenance, a little (or a lot) scattered, not always punctual, and/or just generally nutso, give us some grace.  Unless you have been in our shoes, you can't understand the scars that our journey has left and the stress that we continue to be under. We have spent too much time fighting for our children's lives for us to be normal, and with therapy, we're still fighting for our children's quality of life, even if they aren't in physical danger anymore.  A pattern of missed sessions and non-compliance is one thing, but otherwise, a little kindness and understanding can go a long way with us. And we will love you forever for it.

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!

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Weigh In and GI Update

January 26: 9.6 kg (21 pounds, 2 ounces), 33 inches

February 16: 9.8 kg (21 pounds, 10 ounces), 33 inches

Three weeks' change: +200 grams (8 ounces), + 0 inches

Net change:  +2100 grams (67 ounces = 4 pounds, 3 ounces), +4 inches

So we're still moving along...a slower pace, but still gaining, which is better than we did last fall.  For the next couple of weeks, she will be likely to have gained about her coming home weight (from the NICU at 5 1/2 weeks past her due date) since we got the feeding tube in July.  I don't remember exactly how much she weighed when we brought her home, but it was somewhere around 4 1/2 pounds.  

Two weeks ago, we had an appointment with the GI doc.  I'm not sure if I mentioned it on here or not, but we changed her reflux med from Zantac to Prevacid about a month ago.  We didn't go to the doctor then; it was all done over the phone and Vandy's messaging system.  I spoke only to a nurse but ASSUMED that she was actually talking to the doctor, or at least that the doctor was at least aware enough of the situation since he was the one (again, I assumed) was writing the prescription.  

Silly me.  When he asked how everything was and I launched into how the new med wasn't really helping (b/c she was still vomiting), he stopped me as he looked back over her chart again...because he didn't even know that we had switched meds.  When I mentioned it, he thought our regular pediatrician had done it because HE DIDN'T WRITE THE PRESCRIPTION.  He had no idea that I had even had a minor battle with the nurses to get anything changed.  What.  The.  F.  Since then, I've pulled up the electronic copy of the prescription (via the aforementioned messaging system, which is really handy), and it was NOT written by a doctor. I can't tell if the prescriber was a nurse practitioner or a just another nurse b/c it's written in some secret code (something like "written by XXXX in accordance with policy #78431598713.1").  

Let me be clear.  I love nurses.  I love nurse practitioners.  I have nothing against them, and would have no problem seeing one myself (with the exception of OB care since I'm in the major leagues there).  I would be happy to send my sweet husband to an NP.  The NICU NP's saved Becca's life on a regular basis.  I'm a fan.

BUT - I'm going to go out on a limb here and say that if a child has specialists from NINE (9) different departments, maybe, just maybe, that patient needs to be treated by the full medical doctor who knows her and her history.  Call me crazy.  I'm quite sure whoever I was speaking with did not take the time to read Becca's entire medical history or her chart.  I know how long it takes STAR panel (the medical charting software they use) to load her chart because I often have to make awkward small talk with the providers while they wait.  So maybe, just maybe, when I send a message to the doctor about a significant part of my daughter's medical care and well-being, that doctor should at least lay eyes on the message, consult with the nurse, etc, even if he is too busy to actually take the time to call me himself (which, mind you, several of our doctors do).  But our doc did not even KNOW that we were having issues.  

You can guess how blunt I'm going to be in the message I'm sending them tonight.  "PLEASE MAKE SURE THAT DR. MOULTEN SEES THIS MESSAGES PERSONALLY AND RESPONDS TO ME DIRECTLY."  At least I'll say "please," right?

Wow, I'm more upset about this encounter than I had realized.  Thanks for you patience with my blog therapy.  :)

Still, even with the less-than-stellar communication and complete lack of teamwork, the medicine switch hasn't been a horrible thing.  But it's still not working.  This week, Becca has thrown up 4 times.  That's maybe an improvement, but it's still way too much.  Yes, she's still gaining weight, which is the first difficulty with the vomiting (the sheer loss of calories), but she is still vomiting a lot.  And I think it's starting to have a psychological effect on her.  I think I've told you that she makes Baby Rosie throw up occasionally, and the other day she told me that Elmo was crying because he was sad because he had thrown up, and then she had to carry him around and comfort him for several minutes or "he" would start crying again.  As if there is already enough going on in her life to give her an eating disorder.  That's just pitiful. 

So here's what we did: the nurse had started us on 7.5 mg of Prevacid twice a day, and Dr. Moulten upped it to 15 mg twice a day.  Prevacid is a stronger medicine than Zantac, and the doctor (unlike the nurse - I specifically asked her) was able to explain how it might actually help reduce the vomiting.  Zantac basically just reduces the pH in your stomach so you don't have as much acid floating around.  Prevacid (and Prilosec as well, I believe) actually shut off the acid-producing pump in your stomach by blocking the receptors that tell it when there is food in the stomach, starting it up.  It still produces some acid, but not nearly as much.  And less acid in the stomach makes for a healthier esophageal sphincter.  (That's the muscle band at the top of the stomach that opens and closes to let food in - and vomit out).  If the sphincter is inflamed (which Becca's is), it is looser, so it's easier for things to pop back up.  That's why she is way more likely to vomit when she gets choked up on something - once the reflex is triggered, there's really not much to stop the contents of her stomach from making their reappearance (much like my innards when I was pregnant).  I'm also guessing that the fact that she had a tube running through the sphincter and into her stomach for 18 weeks of her life, including 5 of them when she was a past-term infant, hasn't exactly helped to strengthen its muscles.  We don't actually see much textbook reflux (or at least we didn't in her tests), but when she gags (which happens frequently, given her sensory and feeding issues), you better get out of the way (unless you are SuperMom or SuperDad, who run TO the puke, which is what makes us Super).  

So - the Prevacid should help get the sphincter healthier and keep food down.  But like I said, she's still puking.  And here's the ironic part - 3 of the past 4 vomits have been triggered by her choking on her Prevacid quick-dissolve tablet.  I know that either Prevacid or Prilosec is availing in a liquid form because I have friends whose infants have taken it, but apparently TennCare won't pay to have medicines compounded into liquids anymore, so we may be stuck with the puke pill that is supposed to stop the puking.  Awesome.

I think the next step is for me to send a polite-yet-firm message to the office requesting to speak with Dr. Moulten himself.  I think (because he told me this would possibly happen) that he's going to add the Zantac back in and see if together they can settle her little tummy down.  

And then we've got to get back into feeding therapy.  Yes, we took a little (3 week) hiatus.  Long story short, we are switching therapists, not because of any particular issues but because of insurance changes, etc.  Once we get all the paperwork in, Becca will start getting feeding therapy AT school, which is awesome because it means that they can actually do part of the session in the classroom during snack or lunch, so she'll have her peers around to help encourage her.  (And it's also awesome because it's done during school hours so we don't have to take an entire morning to trek 80 miles round-trip to Vandy every Friday - woot!)  Both of her former feeding therapists have been happy with her actual chewing, but I think there are some issues there.  There's the gagging, but we're also noticing (because we get to see her meals multiple times) that she's swallowing a lot of things whole.  She threw up in the bath tonight (got choked on some water) and started playing with the mini pepperonis.  Niiiice.

I'll keep you posted.  If I had known GI issues were going to be so much trouble, maybe we wouldn't have added them to the cadre of doctors this summer.  Ha - if only it worked that way, right?  :)

p.s. John took down the crib tonight.  We had left it up in her room in case the switch to the big girl bed didn't go so well.  She never needed it - and now there's no going back!  

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.

TennCare Cuts

Last night, Nashville's NewsChannel 5  covered another story about TennCare and disabled kids.  The Hamby family's story is very much like ours (except that their son has had 21! surgeries, making Becca's 5 look pretty measly).  Little James will be losing his TennCare coverage as of January 1st.  (I'm not sure why had got to keep his so long when most of us were kicked off early this year.)  His mom stays home to take care of him and to shuttle him to doctors' and therapy appointments, and his dad works 4 jobs, one of which is as a public school teacher.  Even with their private insurance, the co-pays and excluded items will cost a great deal of money, and they are afraid that even with dad's 4 jobs, they won't be able to cover it all.

These are not irresponsible people who have made poor decisions.  They are (or at least appear to be -- I don't actually know them) hard-working people who had the misfortune of having a son born very early.  (In the piece, the reporter says that he was born 5 months early, but I'm guessing what she really meant was that he was born AT 5 months - 23-24 weeks, as opposed to 20 weeks gestation.  I could be wrong, and people have assumed that Becca's birthweight is a typo before, but I think I most likely would have heard about a surviving 20-weeker born in the mid-state area.)  They didn't choose this path, and they are doing everything they can to give their son the best shot at living up to his potential.  But then, due to "budget cuts," the state pulls the rug out from under them, and they will likely have to begin choosing from among the many therapies, appointments, and/or procedures, all of which are contribute to giving little James the best shot at a normal life - and, if you have to think about it in economic terms, the best shot at becoming a contributing member of society, functionally and financially.  Sure, in the article you hear that a local business collected $1,400 for the family, and that's GREAT, but let me tell you that $1,400 will not go far.  $1,400 won't even pay for 2 weeks of Becca's co-pays and excluded expenses.  

I don't mention Becca's expenses and the community contribution to the Hambys to ask for pity or contributions.  I mention it because it's evidence that we need a systemic, societal approach to caring the members of our community that cannot care for themselves.  I don't want to get into a debate about people who other people think could or should  care for themselves; I'm talking about people who flat-out can't do so.  Good Lord, if we, as the wealthiest society in the world, can't care for disabled kids, what in the world is wrong with us?  What's next, shooting golden retriever puppies for the fun of it?  To me, this is one of the basic functions of government: to serve as a safety net for those members of society who can't meet their basic needs.  And I'm also not talking about having the state pay to send Becca to Disney World or, oh, Harpeth Hall (though, HH folks, if you are reading and want to send a full scholarship our way, I'll be happy to share Becca with you in, oh, 7 years ;) ).  I just want to keep my baby from being cut off from her health care.  

Our private insurance does not cover any of Becca's feeding supplies (about $700/month) or her special formula (also about $700/month) or her growth hormone shots (about $1,000/month, but that will go up as her dosage increases), and it leaves us with 20% of nearly all covered expenses.  20% of her therapy costs is $822 a month (yes, that's the 20%, not 100%), leaving us with a grand total of about $3200 a month.  Add in a pediatrician appointment, a visit with one of our nine specialists and a lab test of some sort (which would be a pretty slow month doctor-wise), and we're easily up to $3500.  Multiply that by 12, and you've got $42,000 a year.  What "normal" family can afford that kind of cash?  Even if I do (crossing my fingers) find a job, we'll have to pay to put Becca in daycare full-time (and only certain daycares would accept her, mind you), which would run somewhere around $10,000 a year in these parts, which quickly tops out above the top range of my earning potential- and I have a master's degree.  We have been very, very, very fortunate to be able to keep our TennCare coverage this year (for Becca - John and I don't qualify, and that's fine with us) because of our modest income, but next week I have our recertification interview.  We could quite possibly lose our coverage in January, too.

Makes you think, doesn't it?  Especially in a week in which Congress voted to extend tax cuts to the wealthiest Americans, essentially giving them $36,000,000,000 back in their overstuffed pockets, and to exempt the first $5,000,000 of an inheritance from estate taxes.  Perhaps unfortunately for me, I don't know anyone who will benefit greatly from these breaks, as they are reserved for the wealthiest 0.1% of Americans.  

I count among my readers some very conservative, very compassionate, very faithful and very generous people, whom I know interpret the role of government differently than I.  Many of them would say that it's best to let people keep their own money so that they can distribute it to charitable causes as they see fit.  And many of you actually put your money behind your words.  But I guess I'm a realist (some of you will no doubt see me as a pessimist): I think that when left to our own devices, we hoard more than we need and we, the collected members of society, fall short in helping others meet their basic human needs.  Often charitable giving is heartfelt and helpful, like the $1400 given to the Hamby family...but it's still a drop in the bucket for this family, and there are many more families like them.  I have a dear friend who has long been a political and theological conservative, but lately she has tended to vote more Democratic because, in her words, she "had to stop voting based on how [she thinks] the world should be," with folks, churches, etc. giving enough to help everyone who truly needs it, "and start voting based on how the world is."  

I would love to be proven wrong.  If you count yourself among the super-wealthy (or if the IRS does), adopt James.  Or Dax.  Or Bella.  Or Mary Farris.  Or Becca.  Cover their expenses.  Go for it.  I dare you.  But I'm not holding my breath for you.  

To the rest of you, who may not be plotting the best way to pass on your $20,000,000 estate to your kids, all I ask is that you keep these issues in mind as you ponder your political inclinations, as you vote, as you talk with friends.  And if you're in Tennessee, maybe you could contact your incoming state legislators to encourage them to reinstate TennCare coverage for disabled children.  Because, really, if we can't agree to help these kids, I'm afraid there is very little hope for any of us.

Developmental Update, 2 Years Adjusted

One of our appointments last week was Becca's 2-year visit to the NICU follow-up clinic. We were sad to find out that Dr. Daily had retired, but we got to once again see Odessa Settles, who I believe has been working with preemies at Vandy for 40-some-odd years. Wow. She's extra cool because she's a vocalist on the side, appearing as a regular cast member on Tokens, "Nashville's New 'Old Time' Radio Show." In fact, they are recording an episode at the Ryman on the Sunday before Thanksgiving, and the guests include Keb' Mo' and Shane Claiborne. John and I are going, so let me know if you'd like to join us...or if you want to hug an Itty Bitty that night. ;)

But back to Becca. This visit involved a complete Bayley exam, which measures development in 5 areas: cognitive (thinking and figuring things out), receptive language (words she understands), expressive language (words she actually uses), fine motor skills (tiny movements) and gross motor skills (big movements). (The previous link describes the 5 areas in more detail, if you are interested.) For each area, I'll give you 4 scores: the overall average for kids taking the test, her score based on her actual age (27 months), her score based on her adjusted age (24 months - remember, this is based on her due date "birthday"), and her age-equivalent.

Cognitive: Average = 85-115

Actual = 95

Adjusted = 105

Age-Equivalent = 25 months

Receptive: Average = 10

Actual = 10

Adjusted = 12

Age-Equivalent = 26 months

Expressive: Average = 10

Actual = 8

Adjusted = 9

Age-Equivalent = 22 months

Fine Motor: Average = 10

Actual = 8

Adjusted = 10

Age-Equivalent = 23 months

Gross Motor: Average = 10

Actual = 6

Adjusted = 7

Age-Equivalent = 18 months

When thinking about these scores, keep in mind a few things:

• These scores are a snapshot of the tasks she was able to complete on a particular morning. I'd say that she was pretty much herself that morning, though she did get tired by the end of the 2-hour exam (go figure).
• When looking at month-by-month age equivalents, our goal is still for her to track according to her adjusted age. Many doctors, schools, therapists, etc. stop adjusting for prematurity at age 2, but folks in the NICU follow-up clinic say to give micro-preemies (preemies born weighing less than 2 pounds) until age 3 to catch up. In other words, she will look more delayed because most assessments stop adjusting, but don't get too worried about lack of developmental catch-up until she is 3. (But then again, much of a child's developmental trends are well in place by age 3; that's why many public health organizations focus on the 0-3 years.)
• Given her history, every single one of these scores is absolutely amazing and far better than we even risked imagining 2.5 years ago.
• And the usual caveat: no developmental assessment (or any standardized test) is perfect.

That being said, these scores are okay. I wouldn't say she blew it out of the water or anything, but none of these scores is really surprising. Based on her adjusted age (24 months), she is delayed in expressive language (by 2 months), fine motor skills (by one month) and, most significantly, gross motor skills (by six months). Based on her actual age, she is delayed in every category, the most dramatically so being her 9 month delay in gross motor skills. This score is even more sobering when I realize that had she not started walking this summer or had we done the assessment at our regularly scheduled appointment (the day after her birthday), she would have scored at an 11-12 month level for gross motor skills. The positive flip-side of that is that she gained 6 months worth of skills in 2 months just by learning to walk. So I'm pretty sure that Jane and Ashley (our physical therapists) deserve a very big shout-out on that one. In fact, let's take a minute to thank ALL of our incredible therapists: Cindy, Jane, Caroline, Karla, Roxanna, Ashley, Tom and Melissa. Without their help, I shudder to think of how far behind we'd be. As much as I get sick of carting the kiddo around to appointment after appointment, I am so thankful for all the work and love these therapists have poured into my sweet child. It really does pay off!

Based on these scores, we're not sure if Becca is going to qualify for special education services when she turns 3. I don't know if I've mentioned it on here or not, but at age 3, kids with special needs shift from Early Intervention to the public school system for their services. When we moved, we made it a priority to live in a school district with a very good special education program in case we needed it (whether for Becca or for our other potential preemies down the line...and yes, John and I do plan that far ahead for such extenuating circumstances...at least when buying a house!). We'll begin our transition meetings with Early Intervention and Williamson County Schools in January, and they will do another round of assessments, but it looks like she may be borderline for services, depending on which ones they consider primary vs. related. (For example, in many school systems, physical therapy is a related service, meaning that you can't qualify for special education services on physical delays alone. However, if you qualify, say, on speech, you can receive physical therapy at the school as part of your Individual Education Plan.) I know, I know, I'm getting ahead of myself here, but, wow...that's really not that far away! I would be thrilled if she flat-out didn't need services, but I'm afraid that she will fall just above the cut-off and not end up getting the services that would really benefit her. Especially if we lose our TennCare at our next review in the spring, we'd be left with muchos therapy bills. (And therapy is NOT cheap. I opened a bill from PT recently, and each 1-hour session was running about $300. Holy crap.) For now, I try not to think about it too much!

The most important point, though, is that Becca is making tremendous progress. Given the incredible odds stacked against her, she has exceeded everyone's expectations. In fact, if she were taking her O.W.L's, I would have given her straight "O's," for "Outstanding." Yes, we have lots of therapy in our future. (Now that I think of it, I was really hoping that she'd come out with amazing scores and we'd be able to drop some sessions...but we're not there yet.) Yes, we have to do a lot of hard work at home. But yes, she is -- and will continue to be -- absolutely amazing. I'm very proud of you, little girl!

This Week's Preview

This is one very busy girl this week.

Monday, she goes to school (hooray!) and then to see the nutritionist at Vandy.

Tuesday, she goes to gymnastics in the morning and then the ENT and audiologist in the afternoon -- AND TURNS TWO, ADJUSTED! Wowzers!

Wednesday, she has physical therapy, occupational therapy, and a pediatrician appointment (probably with a flu shot), all in a row.

Thursday, she has her 2-year (albeit late) NICU follow-up appointment, which is rumored to be 2 hours full of in-depth assessments. I, of course, am excited about this one, except that we are going to have to wake up at the crack of dawn to get there!

Friday, she has feeding therapy, like normal.

SuperDad is in Kentucky all day on Tuesday, and on Thursday night I - I'm so excited! - fly to NYC to see one of my best friends in the whole wide world (Lauren S., for you Brentwood folks) and her sweet baby Everett (or Eh-vy, as Becca calls him)! We had some vouchers from past travel so Lauren's sister, Sarah, and I are flying for $64 roundtrip! Wohoo! So it's really a busy week for all of us, but I'll try to update as we make our way through appointments. And while we don't actually (yet) use the Wii in her therapy, I do often see this hard-at-work expression on her precious face. She's such a trooper! You're doing great, Becca Hill!

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.

An Appointment a Day Keeps the Doctor Away?

Oh wait.  That doesn't work.  But we tried it this week.

Monday: First visit to WAVES.  See two posts ago for more details.  Definitely a fun, fun appointment.

Tuesday: Endocrinology.  Regularly scheduled, also turned into hospital follow up.  See detailed description below.

Wednesday: Physical therapy with Ms. Ashley at 100 Oaks.  I may have said this before, but Ms. Ashley is wonderful, though she is definitely no Ms. Jane, but the facility is a magical playland.  I want to have my birthday party there.  Zip line, foam pit kind of thing, a track around the room for riding toys, a mini basketball court, and fancy stairs with - how to explain this? - colored water in the walking surface that moves around when you step (make any sense?).  Becca had a hard time focusing on the task at hand (whatever the task was at the moment), but, frankly, so did I.  So fun.  Now that Itty is walking, we are working on stooping to pick up a toy and learning to use our feet (to kick, etc.).  It involves putting stickers on the tops of her shoes and kicking beach balls.  PT is fun.  (And this makes me feel better about spending Becca's gymnastics money on repairing the leaking water main.  Homeownership is not fun these days.)

[Just for the record, I am ignoring my daughter, who is standing at the back door (I am on the deck) screaming, "Mama! Mama!  Mama!  Mama!"  I wonder how long it will take until it bothers John, and he rescues her.  (He is "primary parenting" right now, as I like to call it.  Thank God for Fridays.)]

Thursday:  Occupational therapy evaluation.  Good eval; still looking at weekly therapy whenever a spot opens up.  Fine motor still looks good, but we'll work on sensory issues and some related feeding issues.  (OT is the primary discipline for working with sensory integration, the kind of therapy required for kids with sensory processing disorder, or "SPD.")  I'm still crossing my fingers that Karla will miraculously decide to transfer over to Vandy, but for now, I'm waiting for a call.  For sanity's sake, I might hold out for a slot that piggybacks on PT.  Therapy exhaustion is a very real issue, and not just for the kids.  There's only so much back and forth and home therapy exercises you can do before you all burn-out.  But hopefully that will open up soon.

Friday:  Feeding therapy, first session.  Again, no Ms. Caroline or Ms. Roxi, but I think Melissa will work well with Becca.  She did convince her to lick a piece of peach drenched in syrup, so that was progress.  We'll do 20 sessions once a week, which is down from the 2 per week we were doing, due to availability - as in, we are only able to get into therapy because being inpatient for so long (and having a fabulous inpatient therapist) bumped us up - not even kidding - 40 spots on the waiting list.  Wow.  Again, I say: pediatric feeding therapists, get thee to Nashville!  We need you (and your GI buddies).

Okay, now back to endocrine.  The good news is that we don't have to test her blood sugar anymore, unless we see something suspicious.  But the bulk of the appointment was spent talking about growth (our regularly scheduled programming, right?).  Now that she is two, beginning therapy with growth hormone is an option.  Once we begin therapy, we will continue it until her growth plates close around age 14.  (Yes, that's 12 years.)  After reading Becca's "bone age test," which is just an x-ray of her wrist, looking at whether her growth plates are closing more or less quickly than average (they aren't), Dr. Lomenick's best (highly) educated guess is that her full adult height, without the help of growth hormone therapy, is around 4 feet, 7 inches.  Yikes.  (Note to anyone reading who may be 4'7" or shorter: I am not saying there is anything wrong with being of very small stature.  But I would like to spare Becca some challenges in life, since she's faced more than just about any of the rest of us in her 2+ years.  My guess is that you would agree.  And I'd love to her your input either way.)

To clarify: Becca's body does produce growth hormone effectively, but it likely doesn't use it efficiently, and even if it did, she had such a disadvantage at birth (you know, being 9.5 inches, stretched out head-toe), that she needs extra hormone to help her reach a more manageable adult height (hopefully somewhere around 5' - 5' 2").

John and I have decided that, assuming our insurance will cover it (according to the docs, they have never had a company deny it when it is specifically for kids who were small for gestational age at birth - but I'll believe it when I see it!), we are going to begin therapy right away.  We'll have to give her daily subcutaneous injections.  (Subcutaneous means "under the skin;" they aren't injected directly into a muscle, like many vaccines are).  "SubQ" injections, like the ones I gave myself while I was pregnant, are less painful, though they are still no picnic.

We could have decided to wait a couple of years to begin so that Becca would be better able to understand why we were giving her all of these shots, but there are several reasons we want to go ahead and get the show on the road.  The most important is that the longer you give the shots, they more effect they have.  (Makes sense, right?)  If we're going to do this thing, let's do it.  Kind of how we approach much of life.  This way we'll also see faster results (again, makes sense).  After seeing her at school on Monday, so so so so much smaller than her peers, we agreed that it would be good to at least help her a little before kindergarten.  Dr. Lomenick thinks that if we start now, she might at least be near the bottom of the growth curve by the time she is 5 or 6.  (By the way, she is still hanging out 6 inches below the 3rd percentile.  I'm serious when I say she's not on the charts.)  And finally, if we start now, she'll be used to getting the shots.  She won't like them, I'm sure, but she is a tough kid who gets accustomed to doing difficult things, so I think it's wise to go ahead and use that adaptability to her advantage, rather than waiting until she is a more inflexible 4 or 5 year old (when changes or unpleasant experiences tend to be more difficult to introduce).

As Dr. Lomenick said, though, the question was really about when to begin treatment...because the question of whether or not to treat her, when we have a therapy that is safe and effective, and at least attempting to help her grow taller than 4' 7", is really a "no-brainer."  (Seriously, his words.  Very rarely are doctors so forward in sharing their opinions on such matters.)  And he's right.  I hate the idea of giving her shots, but I know we can do it, and when you start thinking about independent living at 4'7", it gets difficult.  Not impossible, of course, and I have no doubt that Becca could manage just fine, thank you, but that's a lot of adapting.  For example, imagine someone the height of an average 9 1/2-year-old girl (pre-growth spurt) trying to see over the steering wheel when driving.  That's tough.  So we're going for it.  We should hear back from their office with clearance from insurance by next Wednesday.  And we had better have clearance from insurance...because growth hormones are very expensive, especially 12 years' worth.

Next week, miracle of miracles (okay, not really - it was just a lot of rescheduling on my part), we have no appointments, because we will (probably) be going to camp!  John is definitely going to lead a week at Aldersgate Camp (his old church camp and his favorite place in the world), and I'm hoping that Becca and I will get to join him for a few days, God willing and the creek (aka the bog from the leaking water main) don't rise - and the plumbers cooperate.

That's all well and good, but I'm pretty sure 90% of you are here for the pictures.  How about this gem for today, then?

Mommy and Becca, mid-silliness

Hospital, Day 1.5, aka Days 126-127

Don't know if today counts as the first day or the second day since we are just now zooming in on 24 hours. I don't have much energy to wax eloquent, so I'll just give you a run-down of the day.

We got to our room last night a bit before 9 pm, and after Becca was poked and prodded and had an n-g tube shoved down her throat, she fell asleep around 10. Thank goodness the nurses decided to ignore the orders to check vitals every 4 hours so that she could sleep! (Seriously, she's not here because she's sick - why wake a sleeping toddler who is here to grow every 4 hours by taking her blood pressure?) She woke up at 6, so she got 8 of her normal 12 hours of sleep. Not too bad by hospital standards. They gave her 12 ounces of her formula (Boost Kid Essentials 1.5, packing a whopping 45 calories per ounce, same thing she gets in her sippy cup) through her n-g tube over 10 hours. When she woke up and I realized that she had already gotten 80% of the calories she needed today, I felt like a new woman. Giving her breakfast was actually enjoyable (even though she ate 4 cheerios and 1 grape).

This morning, we saw the resident on GI duty and the GI fellow. Actually we saw each of them twice. We never did see the attending (!) or the endocrinologist that we were hoping to consult.

We stayed busy throughout the morning. We (and by "we," I mean Becca and I, as John was at home waiting for the interwebs guy) saw a child life specialist (perhaps the coolest job in the hospital), who brought us a playmat (not like we can keep this kid off the dirty floor, but at least we can cover part of it and make it more comfy for mom and dad to sit on) and some fresh toys, including a plastic Fisher Price armchair, which is adorable and the perfect size for Becca. We may have to use some birthday money to get one for home. I particularly love that it has a book attached to the side table. But I digress. We also talked to the social worker, who gave me some numbers to call to investigate ways for me to go back to work without causing us to lose our TennCare (again). Then Becca received a short occupational therapy evaluation. The OT suggested that we still keep the (rescheduled - was set for tomorrow) outpatient evaluation so that they could do more thorough assessments of her, but she is recommending that she get OT 3 times a week while we are here. (That's way more than we normally get, but, remember, we're in feeding boot camp, so I guess they want to hit the sensory issues hard while we're here. I'm all for it!) We also managed to see the speech/language pathologist (aka feeding therapist) at lunchtime, which was great! She is actually making calls/sending e-mails to get us fast-tracked into group therapy instead of sitting on the waiting list with 41 other kids. I guess having the GI admit you and threaten you with a feeding tube moves you up the list a bit. Of course, Becca totally made a liar out of me by...drumroll....Karla, Caroline, and Roxanna, this is for you....eating 5 bites of applesauce off a spoon! Wow!

After lunch, Daddy arrived, which was very exciting for both Becca and me. Once we got Becca to sleep, we got to spend some time with two of my most favorite people in the world, Carol and Pam. Becca woke up while Pam was here, so she even got to play with her some. Pam being the rock star that she is, she even helped entertain/comfort/distract Becca while they shoved the tube back down her nose into her stomach.

Oh yeah, I forgot about that one. Mid-morning, Becca was sitting on my lap, eating some pretzels, when she, as usual, gagged, coughed, settled down again, and then puked. Good times. I even had to go back and revise her food journal because I could identify pieces of breakfast that I didn't notice her actually eating. Yum. The amazing part? The nurse cleaned it up! Whoa! I didn't have to clean up the vomit! We may never leave this place.

But back to the afternoon, which I am apparently not recounting in chronological order, because before Pam arrived, I took a nice nap (though nowhere near Becca's 3 hour slumber) while John watched World Cup games on the computer (okay, he probably worked on his sermon some, too, but I only saw the soccer games) and talked to the visitors I missed, including the nutritionist and our buddy Melissa. Oh, and I also ran into a friend in the Taco Bell/Pizza Hut line (love healthy hospital food!) who happens to work in the sedation/surgery/etc office and offered to act as our mole. She later gave us the down-low on tomorrow's plan (since, you know, we never saw the attending, though he apparently stopped by, didn't see us, and didn't bother to ask the nurse where he might find us even though we were just a few yards away eating lunch - ugh).

So here it is:

She's getting tube feeds from 10 pm - 4 am, though now that I think about it, I don't know how much they are giving her. At 4 am, they will switch to IV fluids, which she will get up until her procedures begin at 1 (per my mole) or 2 (per the resident, via the nurse). She will be NPO (nothing by mouth) from 4 am on. At some point they will give her an enema and/or a suppository. Yay! Sounds like a fun morning for both of us! They will put her under general anesthesia and perform an upper and lower endoscopy. They are looking for...umm...irritation, tears, and inflammation, I think, and will take teeny tiny biopsies. Both with their pictures and the biopsies, they will look for things like food allergies, including celiac disease. After the scopes are done, they will run another tube down her other nostril and place a pH probe in her esophagus. Over the next 24 hours, the probe will measure the pH levels, checking for stomach acid shooting back up.

My hope is that the tests will show clear results (as in, obvious ones - I'll be kind of pissed if we've come this far in dealing with obvious reflux and they don't show ANYTHING wrong) and that she doesn't wake up from the anesthesia completely hysteric. Last time she had to be put under, the recovery nurse very emphatically suggested that we take her out of the unit when she got so loud and inconsolable that other parents were coming and checking her out. Seems that itty bitty has an awful lot of her cousin Emma in her, reflux and anesthesia hysteria included...but she's also just as smart, strong, and sassy, so I'm all for the resemblance. :)

I think that's all. Oh! We also had another visitor, via child life: Ozzie, the mascot for the Nashville Sounds (our minor league team). Becca LOVED him. She couldn't care less about the pitcher, but she followed Ozzie down the hall, knee-walking and squealing all the way. Pretty cute.

And now, I'm going to attempt to very quietly watch some Mr. Monk before I sleep. Thanks for all your kind thoughts, words, visits, etc. It's really weird to be back here -- on the same floor as the NICU and in the same unit, kinda-sorta, even -- but it's also really...comforting? Or at least it feels like we might get to the bottom of some of this stuff. Or work out some of the other stuff. I mean, we've been here 1 day and look at all the departments that have looked at her. We're getting somewhere!

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. :)

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! :)

The Poop Doctor

Last week we saw two new specialists and added a specialty (bringing the grand total of specialties to 10 and the current total to 6). I am a big fan of both new doctors!

First, we saw our new ENT. I'm sure you remember that I was never happy with our original ENT, and a few months ago, I finally made the switch. Despite a few awkward questions about my reasons behind requesting a change, we had a good appointment, though we are playing more of the wait-and-see game. Becca was still getting over her cold, so, not surprisingly, she had fluid in her ears. Neither of her tubes are in the right place (though they are both lodged in her ears somewhere), so neither is functioning. The question, then, is whether her ear is normally draining the fluid on its own but was having trouble because of the cold or if she still needs tubes. Dr. Goudy (who is, as everyone said, quite nice to look at ;) ) wants to wait 10 weeks and check her ears again and give her another hearing test (the kind that she keeps failing even though we know she hears). If the fluid is going to drain on its own, it will have done it by then; if not, we need a new set of tubes. At this point, if they give her a new set of tubes, they will go ahead and remove her adenoids as well. Apparently doing so reduces the risk of needed a third set of tubes by 50%. Hopefully, though, when we go back her ears will be clear, and we'll avoid another surgery.

The next day we hiked all the way down to Cool Springs (which won't be much of a hike next month!) to see the gastroenterologist (which, by the way, I think I just spelled correctly on my first attempt!). We had waited four months for this appointment, and if we wanted to be seen at the main hospital, it would have taken another two months. That's annoying. Six months is a long time in a toddler's life, especially if the kid in question is itty bitty and not growing well. This is my message, then: pediatric gastroenterologists, please come to Nashville! Save our FTT (failure to thrive) babies and make bookoos of money at the same time!

It was definitely worth the wait and the drive to see Dr. Moulton, though. He might be my new favorite specialist. After waiting two miserable hours at the ENT the day before, I came to this appointment armed with my netbook and an Elmo movie downloaded to iTunes. (Why is it that specialists are only available during naptime? Seriously, it wasn't even a scheduling issue - the ENT's only in the clinic in the afternoon!) I was afraid this was going to get particularly ugly, as we had driven directly from an hour of physical therapy. I was seriously tossing chicken nuggets back to her on the way there; it was just that kind of day. However, they had us back in a room before I could even finish filling out the initial paperwork. After the nurse got Becca weighed in, etc (at a chunky 15 pounds, 10 ounces - back to where she was before the cold), I asked her to watch her for a second while I made a quick run to the bathroom. (It was my first chance since leaving the house several hours ago - add that to the list of things I didn't realize I would miss when I became a mother!) By the time I got back, the doctor was in the room, pulling her chart up. He introduced himself, shook my hand, and said, "Tell me about Becca's prior medical history."

Well.

That took some time. And he listened the entire time, nodding and making "listening noises" while typing it all into the computer. Good thing they weren't already running behind. I had a lot to say. I mean, remember when we first started talking about growth? Oh yeah, in week seventeen of the pregnancy. That would be...let me count...784 days ago. And we've probably talked about her growth every single one of those 784 days. First off, we had to correct a mistake in the computer: some silly doctor along the way had messed up her chart by charting - in her medical record! - that she was born at 36 weeks. If only! Aaaanyway...I filled him in on everything from the crappy placenta (a.k.a. The Root of All Evil) to our current progress in feeding therapy. As I talked, I kept thinking, "Wow, we probably should have gone ahead and seen these guys already!" I think I've been avoiding it because I've been afraid they'd want to give her a feeding tube, and I just really don't want that to happen.

But...it's back on the table.

After listening attentively, Dr. Moulton said, "Okay. You know a lot about all of this. How can I help you?" to which I replied, "Make her grow!" And I begged him not to cut a hole in her stomach. Okay, not exactly, but I did ask if I still needed to be worried about a g-tube...which he thinks could still be an option. Poop (but more on poop to come!).

Basically, we're now trying to answer two questions:

1. Is she getting enough calories? She needs around 700 calories a day. By my estimation, she's drinking around 500 calories a day (in her formula). That leaves 200 calories in other food. I can eat without even realizing it, but that's a lot for her. Plus, you have to subtract anything she throws up (which still happens every few days). I think she's getting enough calories at this point, but we haven't been tracking it. Dr. Moulton is having us keep a food journal for three days, which his nutritionist will analyze (and is giving me flashbacks of my Weight Watchers days). If she's not getting enough calories, we'll likely explore the g-tube option some more. (I don't think it's as simple as whether or not she got 2100 calories in the past three days, but the journal will be a starting point.)
2. What is her body doing with the calories she gets? To start to answer this question, we're heading in to Vandy tomorrow to have an upper-GI study done. Basically, Becca will drink some glow-in-the-dark milk, and they will take pictures of what happens as it goes down. It should be a pretty simple process and will give us a pretty good idea as to what is going on with her reflux these days. But that's not all! In order to look at whether or not her body is processing her food appropriately, they've got to look at what goes in and what comes out. Yep, we're collecting poop. We've got to take it in tomorrow, but the little princess has decided that she doesn't need to poop today. Little punk. I actually want her to poop, and she won't. It's like being back in the NICU. Anyone have an itty bitty glycerin suppository? Perhaps she'll poop in the morning, but since she can't have anything to eat or drink, I'm guessing we'll have to make a special trip in to town to deliver a Tupperware full of turds. (Pardon me. I just had to say that.)

There you go. The point, I guess, is that she's still not growing as well as they would like, even though she's been picking up lots of steam these past several weeks. She's jumped into 6-9 month clothes (though we still have a few favorite 3-6 month outfits in the mix...I have problems with change), and she's definitely looking more and more like a big girl. And she's eating better, too (not great, but better). Today at therapy, she had 15 blueberries (her current favorite), 2 chicken nuggets, 2 strawberries, 9 craisens (which, by the way, the Blogger spell-check wants to changes to "craigslist"), 3 grapes, and 3 blackberries. That's a great meal, right?! Even when you include her recent growth, though, her overall weight curve still isn't making up much (if any) ground in relation to typical growth curves. I'm not talking about getting her from the 10th to the 50th percentile...I'm talking about still being several pounds below the 3rd percentile for her adjusted age.

It will be interesting to see how all of these tests come out. We'll see Dr. Moulton again in two months (supposedly - though they "don't have his schedule that far in advance" even though I booked our initial appointment four months in advance - weird, but now they will have to deal with me as a return patient if they try to put us off for another four months - and you know mama won't play that game!) and should get the results of the tests in the next little while. (I mean...not that I'll be calling every day until they tell me something...no, not me...) We'll also see a nutritionist at our next appointment, and I think we'll also go ahead and see the nutritionist in the NICU follow-up clinic next month, too. John and I would still really like to avoid a feeding tube, but every mom that I've talked to who has made that decision for her child has been glad they did because it allows you to relax about their food and nutrition, etc. But still, she's collected enough scars in her sweet little life. And if we were going to get a feeding tube, it would have been nice to have gotten it when she was a baby and waking up at all hours of the night to eat. It kind of seems like we'd be backtracking to get one now when she's making improvements in her eating...but we'll do what we need to do. But seriously, please don't take a scalpel to this pretty belly!

p.s. In other news, we are doing the final walk-through on our house after the study tomorrow, and we close on Friday! Wow!