Hearing Aids!

We've got them!  We picked them up and learned all about them on Thursday.  Becca was super excited about them.  They are pink behind the ear with translucent pink earmolds with sparkles.  Very pretty.  We are getting the hang of getting them in so they will stay.  She's done pretty well adjusting to all the noise in the world.  On our way from the office to the car, she said, "Mommy, why is da elwabator [elevator] making noise?"  Because they always have, baby.  Welcome to the world.

There have been a few times that she has been overwhelmed.  At a birthday party on Saturday, she pulled me out of the den and said, "Mommy, I just want to sit wif you in da different room all by ourselves."  So we did for a few minutes, then went back to the action.  No biggie.  The volume adjustment and on/off switches have been deactivated so that she doesn't play with them.  When she gets older, she will have access to them to adjust as needed.

John and I are thrilled not to have to yell and repeat ourselves allthetime.  So much less stressful.  There's something about an uncooperative 4-year-old being much more bearable when you don't have to start out yelling.  This doesn't mean, of course, that she listens all the time.  Several times we've caught her in the regular, "What did you say?" loop - she asks, we repeat; she asks, we repeat; she asks, we repeat.  Finally I say to her, "Becca, I think you can hear me now.  Are you listening?"  With the obnoxious honesty of a 4-year-old, she'll say, "No, I'm not wistening."  So now we have a new rule: no asking questions unless you are going to listen to the answer.

John filmed her reaction the first time they put the hearing aids on and turned them on.  The audiologist put them both in her ears before turning them on.  Once they are turned on, it takes about a minute for them to be ready to go - they make a little chime sound (the pixie dust sound, I'm told ;) ) and then go live.  I think you'll be able to tell in the video when they start working for her.  We are so lucky to have the technology and access to care to help her hear!  Enjoy the video.  Life is good.

Make a video - it's fun, easy and free!
www.onetruemedia.com

Our Happily Ever After

Okay, this time I have an excuse to go nearly a month without posting.  I didn't want to put it out there in the blogosphere before the trip, and all my energy (other than that spent fighting one helluva sinus infection and, oh yeah, growing another human) was spent on preparing for our trip to...Disney World!

That's right, folks, the little miss, Super Dad and I took a rare family vacation with just the three of us and went to see Mickey Mouse live and in person (in mouse?)!  We had an amazing time, and I'll regale you with tales, bargain tips, and lots and lots of pictures later...but first I want to take a few minutes and tell you what it meant to us to be able to take such a trip.

I am 15 weeks pregnant now.  15 weeks and 2 days, actually - almost exactly as pregnant as I was four years ago when we first learned that something was wrong with our first pregnancy.  The doctor called with abnormal results from an AFP screen - the same test that I will be having done at our appointment on Wednesday.  The elevated numbers indicated that there *might* be a higher risk the our child would have spina bifida. 

Spina bifida, huh?  Not what you want for your child.  You want a beautiful, perfectly closed spinal column with no mysterious bumps or openings.  You want your child to learn to walk naturally, unimpeded by such a significant disability.  When you dream about the 10 perfect fingers and the 10 perfect toes and say that you don't care what gender the baby is, "as long as it's healthy," you don't dream about spina bifida.  Those test results were a blow.  But that was just the beginning. 

Spina bifida, we decided, we could handle.  It would certainly  not be ideal and definitely not the path we would chose for our child.  But we knew and know teenages and adults with spina bifida who are spirited, determined and fully independent - even more so than many of their non-disabled peers.  Even if our child's case fell on the more severe end of the spectrum, we would work with them, love them, shuttle them to therapy and do whatever it would take to enable them to reach their fullest potential.  And besides, there was this organization called the March of Dimes that helped kids with spina bifida.  That worked to fortify our country's grain sources with folic acid so that fewer kids would have to face the challenge of a compromised spinal column.  They helped families cope with the difficulties of disabilities related to birth defects like spina bifida.  And their website was the first one I turned to when we started to consider the potential diagnosis. 

But then we saw the specialist, and what we thought was a devastating potential prognosis quickly turned into a lethal one.  You know the story; when the doctor saw that Becca was already 2 weeks too small, she told me that my little girl was going to die.  Worst case scenario shifted from a VP shunt and life in a wheelchair to...nothing.

Nothing.  That's what we came to expect for our little girl's future.  Of course, we still hoped and dreamed and prayed and sang and started this blog, but as far as actual expectations?  Nothing.

No first cries.
No first smiles.
No first steps.

No pigtails.
No kindergarten.
No graduations.

And certainly no family vacations to Disney World.

We didn't give up.  We did everything we could to give her a chance.  But we knew that whatever life we did get with her was gravy, as we like to say in the south. 

People like to say that Becca is a miracle.  I'm not going to dispute that.  But my understanding of the most miraculous part of it all is that as we didn't give up on her, this child that we had already come to know and love, neither did thousands and thousands of people who had never met her.  While we were singing our "Grow, Grow, Grow" song -- and in the decades before Becca even came to be -- doctors, nurses, researchers, fundraisers, parents, neighbors, kids collecting dimes enough to stretch to Washington were working to save her.  Our Itty Bitty.  And I truly do understand that work -- all of that work -- to be miraculous, inspired by God and brought to fruition through the gifts given to these people through God. 

Because people like President Franklin D. Roosevelt decided to use their substantial power to benefit others, Becca is alive.  Because people like Dr. Mildred Stahlman care enough about the babies they would never even meet but whose lives they would save, Becca is thriving.  Because our every day heroes like Drs. Prince and Weitkamp and nurses Millie, Heather, Leigh, Stacy and Carla, who believed in the tiny fighter the had before them when it would have been easier to write her off as another non-viable fetus, Becca is the spunky, tenacious girl she is today.  And because of people like you, who take a few minutes and a few dollars to pay it forward to benefit the itty bitties of tomorrow - like the one I'm carrying right now! - Becca got to meet the princesses. 

Our family is living our happily ever after.  And we hope that continues to be our story as we move through this second pregnancy.  As with Becca, there may be challenges, but we know that whatever life we get -- all of us -- is gravy.  Our family is fortunate, lucky and blessed beyond measure by our little girl and the love and support of our great cloud of witness.  And so this year, at the Nashville March for Babies on Sunday, April 22,

We march because every family deserves their happily ever after.

Please join us, physically or in spirit, by becoming a part of Itty Bitty Becca's Team at www.marchforbabies.org/BeccaHill.

Any size donation helps, and the more who can join us on the day of the walk, the merrier!  We'll be selling t-shirts soon, and if you have a small business, leave me a comment with your contact information, and I'll fill you in on some awesome sponsorship opportunities - starting at $150!  

As loyal readers and dear friends, you have walked with us through the tumult of the past 4 years and into our happily ever after.  I hope that you will take this chance to continue walking with our family by joining us or donating to our team's goal.  Your support truly does make a difference - to me, to John, to Becca, to the little booger in my belly, and to the thousands of babies born each day too sick and too soon.  Thanks.   

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!"

My Crazy-Awesome Kid

I'm been really discouraged lately, thinking about how much "catching up" Becca still has to do, even though we've hit the magic age by which all symptoms of prematurity should have magically disappeared. (That's the age of 3, mind you, and the general thinking is that preemies, if they are going to catch up developmentally, do it by age 2, though we give micropreemies like Becca another year because of the additional challenges they face.) I won't get into all the reasons I've been discouraged, but they are there, they are real, and I've got to own up to it. But then this evening, I was typing up a quick summary of the issues Becca and I faced in my pregnancy and the rocky road she had in the NICU, and I'm once again reminded that everything she does is a miracle. (And someday I really am going to write that post about my theological understanding of miracles, so for now please don't overanalyze my use of the term.) The lists are written for other preemie mamas, so some of you may not understand all of the terms, but don't worry about that. Here they are:

Pregnancy: 27.6 weeks, severe IUGR (370 grams), fatal prognosis @ 17 weeks, 1 week hospital bedrest, emergency c-section. Prematurity due to pre-e, HELLP, IUGR, Fetal Distress (including severe heart decelerations) and Reversed Blood Flow. In other words, my pregnancy was a clusterf&*^. But I have a cute kid now!

Becca: 27.6 weeks (I tend to think of her as a 28-weeker) - very severe IUGR, anemia, mild CLD, osteopenia (multiple fractures), jaundice (& hyperbilirubemia), transfusions (26), multiple infections, pulmonary hypertension, hypothyroidism, septo-optic dysplaysia, silent aspiration, double inguinal hernias (repaired surgically), feeding difficulties, FTT, g-tube (at age 2), multiple failed hearing tests (functionally deaf for 8 months, corrected with tubes), adenoids out, plagiocephaly and helmet therapy, severe sensory processing disorder resulting in feeding problems and g-tube dependence, gross and fine motor delays, growth hormone injections. 123 day NICU stay, 20 days inpatient since NICU discharge.


So, yeah, if you didn't know Becca and just read this list, there's no way that you'd guess that she took 4 ballet classes this week AND peed in the potty twice. That's my daughter.

I SEE You!

Becca had her yearly visit with Dr. Morrison, her ophthalmologist.  Yes, there is one specialist that we only see once a year!  It was a good appointment.  Because of her septo-optic dysplasia, he always wants to get a good look at her optic nerves.  Becca was exceedingly cooperative (probably because we made the whole exam a game of "I see you!"), and her optic nerves look great - regular size and everything!  She is a little nearsighted and has some astigmatism, but they balance each other out so she doesn't need glasses right now.  He did say that "she's a kid who WILL need glasses; it's a question of when, not if," but since SuperDad and I both have/had glasses, that's no big surprise.  It sounds like she may get them on the early side (between ages 5 and 8) because of her prematurity, but that's no problem!  Still, I am quite glad not to be wrangling glasses on a 2.5 year old.  I'm sure by 3.5 (our next appointment) she'll be completely mature enough to handle them.  Today she had trouble even keeping on the sunglasses they gave her post-pupil dilation.  She did, however, hold on to her lollipop.  :)

Transfusion Bingo with RESULTS!

I've been having a little fun on www.myhealthatvanderbilt.com, which gives neurotic parents/patients like me 24/7 access to lab results, vitals and other info from the patient's clinical record.  (It also lets you message your Vanderbilt doctors, which is why I got on there initially.)  I got curious and counted up the number of blood transfusions that Becca had while in the NICU.  So let's play a little game: Transfusion Bingo!  Guess how many transfusions (whole blood, platelets or plasma) Becca had in the course of her stay, and if someone gets it, I'll shout, "BINGO!" wave my arms around so you can see my bingo arm flab.  (Thanks to cousins Jana and Jessica for that lingo.)  So, have at it!  Leave your guess in a comment.  If someone gets it on the dot, there may be a prize involved, but I make no promises.


**Update**
The answer is 26 transfusions: 20 whole blood, 5 platelets and 1 plasma.  
Nobody got it right on, but the Jessicas came close!  Jessica Miller Kelley guessed 23, and Jessica Mulvaney guessed 29.  Average them together, and you get a winner!  I have to wonder if this is some kind of humanymn scam.  (Did anyone listen to "Says You" this week?  They decided that people with the same names are called humanymns.  Or was is humaphones.  At any rate, it was some nice grammar nerd humor.)  Jessica and Jessica, I may dig up a prize for you...partly because you came close, but mostly just because I love you both!

A Snowy Observation

With our massive snowstorm this week (wink, wink), our street became home to several snowmen of various sizes.  There was Becca's Itty Bitty Frosty, about two feet tall, one that had four layers, with swimming "noodles" for arms, standing even taller than I, with a few more snowmen of moderate stature.  It was fun to see the neighborhood celebrating winter like that (and celebrating being out of school for four whole days!).  


The snow was slow to melt, finally disappearing almost entirely from our yard today.  As the week wore on, though, I noticed that the snowmen were feeling the effects of the sun.  The bigger snowmen fell first, even though they had the advantage of sheer freezing mass on their side.  But they toppled under their own weight, heads (literally) rolling off their bodies prematurely.  Becca's snowman, compact and plucky, was the last standing, proudly.  


Moral of the story: being itty bitty makes you stronger!

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.

Premature Birth Report Cards

As I'm sure you read yesterday (or this morning, more likely), today is Prematurity Awareness Day, so designated by the March of Dimes. In honor of the day, they released the newest Premature Birth Report Cards. Based on the percentage of pre-term births, of late pre-term births, of uninsured women of childbearing age and of smoking women of childbearing age, each state is given a grade. The national grade is a big, fat "D". Tennessee's grade is an even bigger and fatter "F". In fact, all of the states in the southeast U.S., with the exceptions of North Carolina and Virginia, received F's. (North Carolina and Virginia both scored D's.) That's no good.

Here'e the link to the interactive map. If you click on a state, you will see their full report, including how certain factors contributed to their score. For example, even though in Tennessee the rate of late pre-term births declined, the percentages of uninsured and smoking women went up significantly, so we kept our F. Scroll down further on a state page to read more about the methodology and grading scale.

Prematurity Awareness Day

Tomorrow (November 17) is Prematurity Awareness Day. By reading this blog, you've probably gotten a pretty good idea what a bummer prematurity is. It sucks. And it's an even bigger bummer for some families who aren't as fortunate as we to have caught a lot of lucky breaks (insert your theological understanding here).

You know, one of the weirdest things about prematurity is that most folks aren't aware of it. I remember walking into David Kidd bookstore (God rest its dying soul) and asking not one, but two employees where I would find a book on premature babies. (There were ZERO in the pregnancy/childbirth/taking care of babies section.) Neither one had, so they said, even heard of the word "preemie."

Should I be so lucky...

Premature birth, like miscarriages and infertility, I think, is one of those things that most people want to pretend doesn't exist. Heck, I want to pretend that it doesn't exist! I think that's because it is so utterly terrifying. In a way, we as humans are most vulnerable (at least in our adult phase of life) when we are creating, bearing, and birthing our young. Moms are physically vulnerable, for sure, but even dads are particularly emotionally vulnerable in the process of having children. There's just so much at stake! Even before a child is conceived, when a couple is "trying" (really, can't we find a better word?), a little piece of your heart is out there. You already love that child, even when it's more a figurative than physical being. And there's nothing you can do to protect it. Sure, when you are pregnant, there are plenty of things you can do (or not do) so as to not HARM your child, but, really, there is nothing you can do to protect him or her completely. Similarly, when you are experiencing infertility, there is nothing you can do to absolutely make it happen. If you have lots of resources or unusually generous insurance benefits, you can certainly vastly improve your chances of conceiving, but you just can't MAKE yourself (or your wife/partner) pregnant. Even as you are celebrating and hoping and praying and (hopefully) making wise choices, things are going on with your (figurative or physical) baby that you can't control. Lots of things. Are out of your control. The well-being of the "thing" you love the most. Is out of your control.

Welcome to parenthood, kids. The terror never fully leaves you. But most parents, I think, live in a little bit (or a lot) of denial, thinking that they can protect their child, thinking that nothing truly horrible could possibly happen to this child, their child.

One of the hidden blessings of prematurity, then, is that you have to leave that denial behind you very early on. I think most parents learn that lesson eventually, but from the moment that, at 15 weeks gestation, we knew there was a problem with our pregnancy, with our child, we lost that naivete. (Granted, being a chaplain and having an anxiety disorder, I probably already spent more time dwelling on the dark what-ifs than most young moms.) I had done everything "right," and something still went wrong, very wrong. And even though my little girl is doing well now, her prematurity has left deep tracks on my soul.

So I'm aware of prematurity. And once you become aware -- really, deeply, soul-rendingly aware -- you don't ever become un-aware. It's like the Skin Horse's lesson in The Velveteen Rabbit. Once you are loved into real-ness, you are always real. And once you become aware of prematurity, you realize that it's not some rare, isolated occurrence. It is, unfortunately, everywhere. Sure, there are certain demographics in which prematurity is more common (if you are too poor to get pre-natal care, for example, you are more likely to have a premature baby), but it really does cut across all socio-economic and cultural lines. And it's prevalent. Waaaay too prevalent. As in, 1 in 8 babies in the U.S. is born premature (before 37 completed weeks of gestation). That's 543,000 babies a year. That's almost 1,500 preemies born each day in our country. That's a lot of itty bitties like Becca. Okay, not quite like Becca. But like Becca.

So tomorrow (or today, more likely), on Prematurity Awareness Day, join us preemie moms, dad, siblings, grandparents, aunts, uncles, and friends in being aware. Be aware of our kids and their painful introduction to the world. Be aware of the struggles that many of us face and will continue to face due to our babies' premature birth. Be aware of the pregnant women around you, and be kind to them! (It's amazing how many people will watch a hugely pregnant woman stand for lack of seating or struggle to lift something they probably shouldn't be hauling around without even offering to help. C'mon! These women are growing a person, for goodness' sake!) Be aware of the nurses, doctors, and therapists who are working day and night (literally!) to keep these babies alive and improve their long-term quality of life. Be aware of the researches who have committed their professional life to making sure that every baby gets his or her full 40 weeks in the womb. And if in being aware, you are so moved to help, please donate here.*

Becca -- and her mommy and daddy and Bear and paci (fa-ci) and Elmo and Bunny Blankey and Froggie Girl and Baby and Lamby ("Nam-a-nam") and other Lamby and Blankey ("Bane-ty") and Kitty Blankey and Kitty Paci -- will be ever so grateful.

*As an added bonus, your contribution may count for even more! I can't find the information on the web right now, but I swear I got something saying that from now until the end of the year, the March of Dimes Board of Trustees has vowed to match every penny given! If that's true, and I'm not just dreaming, your gift is doubly helpful!

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!

Becca is 2 - Again!

Today is two years from Becca's due date. That makes her two by virtually all definitions. Her actual age is 27 months, but her adjusted age is now officially 24 months. I have a 2-year-old. A lot of professionals stop "adjusting" for prematurity at 2; that is, they don't take into account the extra 3 months that she's been ex utero, but the doctors who deal most with micropreemies (preemies born under 2 pounds) suggest giving a child until 3 to fully catch up and adjust up until that third birthday. I figure at this point it's easiest just to refer to Becca as being 2, and I'll tweak when I bestow upon her 2 -and-1/2-year-old status. Unless, of course, she starts telling people her age herself. Could happen tomorrow.

I won't rehash the past 34 months for you and tell you how thankful we are to be here. I'd do it all over again in a minute if that's what it would take to have our baby girl with us today, and it's simply impossible fully to express our gratitude. I'll just skip to the best part. And here she is:

saying "Ta-Da!" (from gymnastics)

being beautiful:

telling Sasha "No!" while Daddy puts the smack down, Dog Whisperer-style:

and one more "Ta-Da!"

(The real-from-the-pro-shop leotard was her "other birthday" present...off the sale rack, of course! She loves that it's covered in stars - a big favorite these days!)

I would really, really love to write a long, eloquent post about how wonderful Becca is, give you an in-depth update on all her medical issues (some of which are non-issues now!), and tell you her birth story the way I now tell her, but, frankly, I don't have it in me tonight. I've got a million appointments this week, a trip in a day and a half, a sick husband, a very rambunctious 2-year-old with an ear infection, and 2 days of Clomid in me. Someday these posts will be written, but not tonight.

Tonight I'll just say that Becca is happy, so very happy. She loves the life that she almost never had. She takes everything she has to do in stride...and a stride that is more barreling than tiptoeing. She makes herself known and knows no fear. She has developed the funniest sense of humor and is just plain cheeky at times. She's stubborn and determined. She's everybody's friend and can charm a full waiting room in 5 seconds flat. She's a happy girl...and so am I.

I am so grateful.

Family Re-Union Video

Remember that conference John and I keynoted at Vanderbilt a few weeks ago? They've posted the video of our speech! Visit this site and click on "Keynote." The first 6:30 is the CEO of Vanderbilt Children's Hospital sharing some thoughts and introducing us. He also sang "Happy Birthday" to Becca. Very sweet. John and I speak for about 26 minutes before taking questions from the audience. Lots of the information will be familiar to you guys, but it gives a nice recap of Becca's story and our journey. You may need to grab some tissues, but enjoy!

One More Thing..

I'm so used to Becca's modelling gigs (haha!) that I forgot to mention here that she's on the cover of the summer issue of Vanderbilt's "...On Their Way" magazine. The whole issue is about prematurity, and Becca shares the feature article with Dr. Mildred Stahlman -- yes, as in the Stahlman NICU -- the Vanderbilt doctor who adapted an iron lung used for polio patients to treat the first preemie ever saved through mechanical ventilation. (And, in an amazing story that some of you friends of this now grown up miracle preemie know, she is a friend and actually took care of Becca in the NICU - wow!) It would not be an exaggeration to say that Dr. Stahlman pretty much invented the field of modern neonatology.

See why I love Vandy?

Anyway, you can see the story online here. Click on her picture for the full story.

Healthcare Reform

Well, it passed! John and I watched C-Span for longer than I'd like to admit to you, watching debate (much of it silly parliamentary stuff, along with enough rabbling to evoke the British Parliament at work), and I nearly cried when the bill finally passed. Tears of joy, that is.

My lovely readers obviously know where I stand on the bill. It's not perfect, it's not far-reaching enough, and it really only addresses the insurance side of the equation (and not topics like tort reform). It's not so much healthcare reform as it is insurance reform. So why is it important to me? Because in this case, insurance reform means reform of disparities of access to healthcare. And in this sense, insurance reform IS healthcare reform to many people, like the 32 million who will now have access to health insurance, and thus, access to healthcare beyond emergency rooms.

And yes, this bill does benefit my family. Becca can no longer be denied coverage because she is, as a friend wrote, "a walking pre-existing condition." (Okay, for now she's just a cruising and crawling pre-existing condition, but you get the point.) And when the full plan goes into effect in 2014, I will no longer be denied coverage for my pre-existing condition (almost dying in pregnancy). Becca won't be kicked off her plan when she reaches her $2,000,000 lifetime cap (remember, she's halfway there already). Eventually (assuming we don't have a massive increase in our family's income), we will receive subsidies to pay for our health insurance (because we make less than $88,000). And, diagnosed worrier that I am, I don't have to worry about how we will pay for treatment if one of us is in a terrible accident or is diagnosed with cancer. I just have to worry about everything else that goes along with those awful occurrences.

But that's not really why I am so excited about this bill. Our family would get by. We have a great support system, and while we are not rich, we manage and would continue to do so. I am excited about this bill because in many ways (not necessarily every way), the ends that it is seeking to achieve are simply right. I know that is a somewhat rude thing to say in this climate of partisan vitriol. I do try to respect and listen to all reasoned and factually correct positions on the issue. But this is where I come down on it: it is simply unjust that people in the U.S., the wealthiest nation in the entire world, cannot go see a doctor when they are sick because they cannot afford it. That is simply wrong. It is flat-out wrong that people who have paid their premiums for years are dropped by their insurance when they get sick. It is flat-out wrong that kids born into this country with a medical condition (be it prematurity or asthma) are denied coverage (and remember, coverage = access to care).

I know this bill isn't good news for everyone. Some of my friends who work in higher-paying industries will see some additional taxes (individuals making more than $200,000 and families making more than $250,000, I believe). Theoretically, I guess, insurance companies may see lower profits, even though they will increase their customer base tremendously, because the bill includes a minimum of revenue that must be spent on actual services to enrollees. And larger companies would face fines if they don't provide insurance to their employees. Folks who are on employer-provided insurance may see premiums raised, but, seriously, have you seen how much they are being hiked anyway? When in full force, the bill will limit these premium increases.

I don't know enough about physician billing to fully understand how it will affect our friendly doctors (and trust me, I want to keep doctors happy - we looooove doctors at our house!), but I do know that there are incentives for new medical grads to go into primary care, which is by far the lowest paid area of medicine. (Seriously, I see a lot of doctors and a lot of EOB's, and our wonderful pediatrician bills at a fraction of the cost of the specialists...but she's our go-to and the one holding all the care together. Seems backwards. Plus, she's awesome and reads this blog, and now I'm just plain kissing up. But she is awesome.) I realize that specialists usually have additional training years, but really, the pay difference is so great that we have a primary care physician shortage in our country...so these incentives are a good thing.

I don't think I'm close-minded. I know that it is very much possible for you to agree with the ends that I see as justice (that is, helping everyone in our country to have access to quality healthcare) and still not see this bill as the appropriate means to this end. And, again, I don't think it's perfect. Not even close. But frankly, I no longer expect perfection out of Washington. I'm not sure why I ever did. Our senators and representatives are just human, after all. And in a messed-up two-party political system. But it's what we've got, and I've learned that you've got to do what you can with what you've got (while trying to make improvements) instead of holding out for perfect. So it's a start. And I think it's a big step in the right direction. Time will tell - and I think that's an another important point.

There are lots of folks on every side of the issue making projections about what will be wonderful and what will be horrendous about the bill, but the truth is, we never know exactly how a piece of legislation this complex is going to play out. And I don't think that is a fault of the bill. I'm just saying that we can't predict the future. Make projections, yes. And that's very important. But I think that maybe we should all take a deep breath before we run for the hills. Let's see how it goes. And, in the meantime, let's celebrate the parts of the bill that I think we can all agree on: more kids will be able to get more care. Families fighting cancer won't have to declare bankruptcy to pay off medical bills. And grieving families of a terminal patient won't get a rescission letter from their insurer. (And yes, I do have a friend who's husband was dropped while he waited for a heart transplant. Wow.)

There. I've had my say. I'm happy about this bill, and I hope you are, too. I would love to hear what you have to say about it, but please, please, please be kind and check your facts before you comment. I have a habit of deleting comments that are not respectful or are blatantly inaccurate. Let's see if we can all play nice. And if you want to learn more about the bill from some relatively balanced and unbiased sources, check out these links.

From the BBC: http://news.bbc.co.uk/2/hi/americas/8579658.stm

From PBS: http://www.pbs.org/newshour/interactive/static/stories/healthcare-comparison.html

A fun visual explanation: http://www.slideshare.net/danroam/healthcare-napkins-all

From the Wall Street Journal: http://online.wsj.com/public/resources/documents/st_healthcareproposals_20090912.html

Sensory Issues

I know you've heard me talk about sensory issues quite a bit on here, and you may be wonderingwhat in the world I mean. Well, today at physical therapy Super Jane gave me a really good explanation of where all of these "issues" arise. Let's see if I retained enough to explain it all!

Since Jane is a physical therapist, this explanation is from a gross motor perspective, but the general ideas apply throughout the therapeutic disciplines (for Becca, that's physical, occupational and feeding/speech). (Gross motor, by the way, just means big motor skills - walking, crawling, sitting, running, etc. - as opposed to fine motor skills - writing, picking up Cheerios, buttoning buttons. Generally, physical therapists work with gross motor and occupational therapists work with fine motor (among other things).

When we talk about sensory issues from a gross motor perspective, there are basically 3 systems/aspects to consider:

1. The tactile input you receive when body parts are touching a surface - for example, when Becca is standing holding on to something, she is getting feedback from the ground under her feet and the surface her hands are holding. This information travels through the nerves and to the brain, where it is processed. At the same time, ligaments in each joint are sending messages to the brain as well (I guess also through the nerves...not sure about that). So when you're standing all the joints you are using (like your ankles, hips, etc.) are noting tiny movements and stretching or contracting to make corrections, keeping you balanced.
2. The visual input you are receiving as you look around, helping you orient yourself in your environment. Are you close to the wall? Can you reach out and touch it? What is the ground like? Rocky? This information is taken in through the eyes (duh) and travels via the optic nerve to several different spots in the brain, where it is processed.
3. The vestibular system, which, according to Wikipedia, "contributes to our balance and our sense of spatial orientation, is the sensory system that provides the dominant input about movement and equilibrioception. Together with the cochlea, a part of the auditory system, it constitutes the labyrinth of the inner ear, situated in the vestibulum in the inner ear." Got that? Riiight...and that was the easy part of the article! Basically, the vestibular system is based in your inner ear and orients you in your environment and controls balance. That's why you are dizzy when you have inner ear infections, and vertigo is an inner ear issue. Interestingly, the reason the world seems to spin when you are tipsy is that alcohol messes with your vestibular system. Next time you are tempted to over do, remind yourself to be kind to your vestibular system. :) And, like the others, the vestibular system sends messages to your brain to be processed.

Okay, that's how things are supposed to work. Clear as mud?

Now, here's the deal with preemies. The vestibular system is one of the last systems to develop in a fetus, so preemies are born without a fully developed vestibular system. So that's off to begin with. Then this preemie with an underdeveloped sensory system is traumatically introduced to the outside world instead of spending, say, another 12 weeks tucked away snugly in mom's womb. The preemie's immature brain immediately has to start processing sensory input that neither the sensory system nor the brain are really ready for. Think about it - the lights, the touch, the touch, the smells, the cold air - it's a lot to take in, even for a regular newborn. Ever notice that no baby enters the world smiling? So the immature brain has to process everything, on top of all the work it's doing to, oh, keep the baby alive, regulating the heartbeat, respiration, temperature, etc. But then, to make matters worse, these preemies are subjected to all kinds of additional (and necessary) sensory input - intubation, IV's, central lines, umbilical catheters, heel sticks every couple of hours, injections, etc., along with the stimuli we would consider normal but are very abnormal for a fetus/baby this age - even the lights and sounds of the NICU (both of which are intense - think florescent lighting and rooms full of beeping machines and busy people) must be taken in by the underdeveloped sensory system and processed by the underdeveloped brain. See where I'm going with this? All of this taken together basically messes things up. Their systems form a little bit off, and the brain doesn't learn how to correctly process the messages it receives, and it's hard to undo that damage. It's a necessary evil, of course, and when docs and nurses are in the midst of saving and sustaining a life, it's kind of at the bottom of the list, but it sure can leave an older preemie with what we call...drum roll...sensory issues.

Becca's sensory issues affect her in a few ways. We're picking up weekly physical therapy again since she's having trouble progressing because her vestibular system is out of whack (hard to stand and walk without it!) and the tactile messages that she is receiving likely aren't being processed correctly. Same goes for occupational therapy (though we've been weekly with them for a while now.) Also because those stimuli aren't being processed correctly, Becca (as you know by now) can't tolerate certain textures on her hands or in her mouth (or anywhere else, really, but those are the most problematic areas since they keep her from eating), so in occupational therapy and feeding/speech, we work on desensitization, which ought to help her brain learn how to process things correctly. For example, today in feeding therapy we stripped her down, and she played in chocolate pudding. Many toddlers would dive right in and welcome the opportunity to make a huge mess, but for a kid with sensory issues, it's really a challenge. She did great, though! That is, she did great in a relative sense: she tolerated the pudding on her hands and even some on her face for a few minutes, and she even finger painted with it a little bit. No, she didn't actually eat any (I would be all over licking chocolate pudding off my fingers!), but she did better than she has in the past. It's a really, really slow process, so we celebrate even "little" victories like this one.

And that takes me to some good news: the sensory system (and the nervous system in general) is very "elastic," meaning that it can adapt and form new pathways. I know a couple of kids who are completely missing their cerebellum (the part of the brain that controls movement), and their brains have adapted. Crazy. Seriously, our bodies are amazing, particularly our brains. You might have heard about people who are impaired in one sense making up for it in another, and this is why people who are blind can still learn to walk, for example, because their vestibular system becomes more refined and makes up for the lost visual input that is typically needed for motor development. And that's the point of all of this therapy: to retrain her compromised sensory system.

The other bit of good news is that NICU's have caught on to the sensory problems that preemies experience and many have taken steps to attend to "developmental care;" that is, they try to develop protocols that are more gentle on a preemie's sensory system and brain. For example, in Vandy's NICU, they cluster the babies care so that every three hours they change their diaper, take their temperature, adjust their position, and give them any feeds or meds that are due. Obviously they attend to a baby in between, but they try to do all the routine things together so that they aren't constantly disturbing them. Young preemies have thick blanket-like coverings over their isolettes to keep the lights out. (You may remember them from Becca's NICU pictures.) Nurses try to keep the noise level down by limiting visitors and not talking to each other too loudly. They probably do a lot of other things, too, and even some new ones that they have come up with in the past 2 years, but those are the big ones I remember.

Okay, that's all I got. Please leave any questions you have in the comments, and I'll try to address them in another post. And please leave any corrections or clarifications you have, and I'll try to address them in the same another post. :) And because you deserve a reward for making it to the end of this technical post: a picture! Here's Becca trying to orient herself in the space underneath my parents' coffee table. She likes to crawl into small spaces - and there are a lot she fits into!

p.s. It's not too late to make a donation! Help the March of Dimes find new ways to prevent sensory issues in tiny kids like Becca by donating here: www.marchforbabies.org/BeccaHill. To date, we are $645 from meeting our goal. Thanks!

On [Not] Being Normal

Warning: the blog post you are about to read could be interpreted as being whiney. While I am a champion whiner, please know that my intention to help you wonderful readers understand my experience of parenting a little bit better. You've been warned. :)

Recently, I have had several well-meaning mothers inform me that there is no such thing as a "normal" child.

I beg to differ.

I am well aware that each and every child on this earth is a unique individual, created by God and in need of an individual type of nurturing that respects his or her individuality. We're individuals. Got it. And yes, your child is very, very special. I'm not saying that normal kids are cookie-cutter kids.

But...claiming that there is no "normal" trivializes my experience of motherhood - and Becca's experience of growing up different. You see, if you say there is no normal, you imply that there is no abnormal. And while my child is no more special than yours, our life together is, simply put, not normal. I can't recall ever hearing a mother of a child with special needs saying that there is no such thing as a normal kid. We moms know all too well what it's like to be abnormal. And even excepting the extraordinary circumstances surrounding Becca's birth and the first 4 months of her life spent in a hospital, Becca is still not a normal child.

People accustomed to normal children simply do not get it. For example, I was at lunch with a group of friends the other day. They asked how Becca was doing, and I said that she was doing well. In fact, she's doing so well that she ate 3 whole, fresh strawberries at lunch the day before. I made this announcement with great bravado and was met with not congratulations, high fives, or exclamations, but...silence. When I explained that we have been in therapy 3 times a week for months in order to achieve such a milestone, they did warm up a bit, but they were nowhere near as impressed with my child as I was. Because they don't get it, even though they are lovely, compassionate people. Why should they understand? I didn't understand until little missy came along.

A normal child eats when she is hungry. A normal child loves to play with messy food. A normal child probably has to go to some kind of therapy at some point in her childhood, whether it's speech, occupational, etc., but probably not 5 times a week, indefinitely. A normal child has some quirks, but they usually don't interfere with basic life necessities. A normal child may be big or small, but is on the growth chart somewhere. You know, with a height that isn't so low that it's in the weight section and a weight that is in the box with the Abbott Nutrition advertisement. (Moms out there know what I mean.) A normal kid is allowed to be around other normal kids. A normal kid gets to make friends. And go play. And check out library books (not that there is any shortage of books in our house these days!). And a normal mom gets to drop her kid in the nursery while she goes to church, to the YMCA, to Bible study, to a mom's group, somewhere, anywhere, outside the house!

Normal is not:

• Trekking 32 miles round-trip for 4 therapies a week, in addition to 1 in-home therapy each week.
• Regularly travelling 80.8 miles round-trip to be seen by 6 specialists.
• Wearing 6-9 month clothing (yep, she's moving up!) 20 months after you are born.
• Not being able to bring yourself to let someone put a spoonful of food in your mouth no matter how much you want it because people shoved tubes down that same mouth for months and months.
• Not being able to function when you get something on your hands because your sensory system didn't have time to develop. Seriously, she f.r.e.e.z.e.s if her hands get anything wet, sticky, or squishy on them, though she is improving here as well.
• Not crying when you get your toddler shots.
• Having to quit your job and set your career aside because your child is too medically fragile to go to daycare. (But I'm really not complaining about this one. It kind of gave me permission to do what I secretly wanted to do all along. But having to do it is still unfortunate.)
• Then having to start a home-based business because you're having to tap into savings because you've had to leave your professional job behind (see above) and you can't afford the ancillary expenses of having a child with special needs (see below). [The business, by the way, is going well.]
• Spending beyond your means to special order food from California (most of which becomes very expensive dog treats), repeatedly fill the gas tank to make it to all those aforementioned appointments, pay premium for the few clothes that actually fit because you have an infant-sized--toddler-shaped child (thank goodness that the grandmothers help out here, along with copious amounts of hand-me-downs), purchase the therapeutic supplies and toy that the therapists "prescribe," and so on and so forth and so on and so forth. See why the break we got with TennCare is so important? And how we'd be s-c-r-e-w-e-d if we ever lost our health insurance (cough, cough REFORM, cough, cough).
• Evaluating every cough, sneeze, sniffle, warm forehead, inexplicable fussy time, or clinginess to make sure that this isn't "the big one" that you fear and secretly expect to come about.
• Counting your child's calories and nutrients -- and feeling her ribs when getting her dressed -- because if she doesn't gain weight, the doctors will cut a hole in her stomach through which food will be deposited.
• Crossing your fingers that your child will walk before her second birthday and doing exercises every day to boost the chances that she will.
• Becoming a mind reader because your toddler communicates even less than other children her adjusted age. Okay, all moms of toddlers have to become mind readers...but our mind reading phase is lasting longer than most. Thank goodness for baby signs!
• Pondering whether or not you should soon begin giving your child daily injections that you will have to continue for the next 12 years in order to give her a fighting chance at breaking 5'.
• Having to plan your life around your proximity to a major children's hospital because your child will need special care for years to come.
• Having to plan your life around your proximity to your high-risk obstetrician and a top ranked NICU (not just any NICU will do for Hill babies, we now know!) because of the high risk that you and/or your child could have very, very serious complications if you were to become pregnant again.

At the same time, though, Becca does lead a more normal life than many other children. We do expect her to eventually do all the things that other kids do. I mean, she probably won't be in the WNBA, but she'll walk, talk, run, go to school, make friends, eat, play sports, dream of being in the Olympics (I'm thinking ice skating or gymnastics - or both, but no pressure), go on dates (if she wants to), go to college (is she can), get married (if she wants to), make me a grandmother (if she wants to...I guess...but if I had to choose between this one and the Olympics, I'd go with the grandbabies, but not until she is settled in a quality relationship (preferably a marriage) and old enough and ready to be a mother herself. But I digress.). And right now she's not on oxygen, not hooked up to any machines, is able to get herself around, and is able to live at home. I know that we are a lot closer to normal than a lot of families. And I am grateful for it. And because I am grateful for it, I will not minimize their challenges by saying, "Oh, all kids have challenges and everyone has their own special needs."

I don't know; maybe I am complaining. I guess I am. What bothers me is not Becca (duh). What bothers me is not even the fact that we deal with all of these difficulties. She's so beyond worth it. What bothers me is when people think they understand and try to skim over the difficult bits of our lives. It seems like it's easy to do now that Becca is doing so well. She looks so good and strong, and medically, she is doing great. But there is far more to the story than meets the eye. Ans so when people miss that fact, like when they laughingly say, "Oh, there's no such thing as a normal kid!" (or when they question the decisions I make on behalf of my child - like whether or not to take her to public gatherings, etc. - but that's an entire post in itself!), I get frustrated.

Those of you who know me personally know that I have never tried to be normal. In 5th grade, I got in trouble with our DARE officer who thought my self-esteem was low because I took being called "weird" as a compliment. (Why he got mad at me for it, I don't know. My pastoral mind now has some questions about his own self-image!) I've never before wanted to be the same as everyone else. But frankly, since that first maternal-fetal appointment in April of 2008, that's all I've wanted to be. Normal. Someday we'll get there. If you are there now, please be thankful. And be careful what you say to those of us who aren't.