Friday, December 17, 2010

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.

Thursday, December 16, 2010

Weekly Weigh-In

Last week8.85 kg (19 pounds, 9 ounces), 32.5 inches
This week: 9.0 kg (19 pounds, 13 ounces), 32.5 inches
Week's change: +150 grams (4 ounces), +/-0 inches
Net change:  +1300 grams (38 ounces), +3.5 inches 

A surprisingly good week, considering she's got a cold, so she's throwing up during the day.  (She throws up with any illness, stomach-related or not.)  It may have to do with the fact that she hasn't pooped in 2 days!

Wednesday, December 15, 2010

1-2-3 Blast Off!

Lately, Becca has been obsessed with space.  It started with the moon, spread to the stars, and then encompassed all things space.  She'll tell you that she wants to be an "AAAA-naut" (astronaut) when she grows up, but I think that with this spacesuit from Aunt Jenny and crew, she makes a pretty good one now.

p.s. Don't forget to contribute to Aubrie's Angels through the link on the right!

Tuesday, December 14, 2010

Aubrie's Angels

You probably remember hearing me talk about my fabulous friend Mollie. She's amazing and hilarious and if you like this blog, you'd probably like hers (maybe even better; she's that amazing). On her blog, you hear about Daxton (who "wasn't ready for the world," born at 23 weeks, 5 days) and Tyler (for whom "the world wasn't ready," the big ole full-term chubster that he is). Each of these boys is in the running for Becca's arranged marriage partner. But on Mollie's blog, you'll also hear about Dax's twin, Aubrie, who was born at 21 weeks and really, really wasn't ready for the world.  Sadly, she only lived in this world for about a day.

For the past two years, Mollie has been trying to figure out how best to commemorate and honor Aubrie's brief yet beautiful life. A few weeks ago, THE idea hit her, and Aubrie's Angels was born.

I've whined mentioned before that having a kid with developmental issues involves a lot of extra costs, even if insurance covers everything medical (which is usually doesn't). With Becca, there is/was all the food we had to special order, the thousands of dollars in gas to get to and from all the therapy and doctor appointments, the special clothes, the adaptive gear, the therapy tools, and the toys.

"Toys?" you say? All kids need toys, right? And most of the kids we know have far too many toys! True, but for kids with special needs the right kind of toys are very important. Preemies and other special needs kids need toys that appropriately stimulate their various senses and specifically work their developing skills. (Think about it: it's not like you can tell an infant or toddler to do 10 reps of a certain motion, like you can do in adult physical therapy. You have to provide him or her with the motivation -- on their level -- to do perform the desired activity again and again.) I can't tell you how many times we've been in a therapy session, and the therapist has suggested and/or asked us to get a particular toy to use in our home therapy exercises. I'm a sucker for any excuse to buy a gift for Becca, but these toys (often premium or specialty brands) don't come cheap. While money doesn't exactly grow on trees here at Itty Bitty Hill, we manage. For many other families, though, the cost of these toys is downright prohibitive, and their kids go without the extra help of these important developmental and sensory toys. So these kids, already at a disadvantage because of their early birth or other special needs, fall farther and farther behind.

But you can help! As one of Aubrie's Angels, you can donate to help provide very special Christmas gifts that will benefit these kids throughout the year. In their first year, Mollie set a goal of collecting 100 developmentally-stimulating toys, and Aubrie's Angels across the country have stepped up to the challenge, almost meeting our goal already! But we'd also love to provide each child with a developmentally-appropriate book to go with their toys...because we at Itty Bitty Hill know the tremendous effect reading with a child can have on all aspects of development. And since I want to make any gift you give to Aubrie's Angels go even further, I am happy to use your monetary donations to purchase Usborne books at cost to give to these special kiddos.

And look what your small (or large!) gift will provide! A gift of $3-$7 will provide a basic learning board book (ABC's, 123's, etc), a visually-stimulating "Find-the-Duck", etc book, a special touchy-feely board book, a first-learning workbook, or -- so important to this population -- a book about going to the doctor. A gift of $10-$12 will provide a deluxe Touchy-Feely book, a first word dictionary (great for kids with communication delays) or the ever-popular Animal Hide-and-Seek, with flaps AND touchy-feely patches, (ideal for a toddler with sensory and fine motor issues).  Your generous gift of $20 will provide The Complete Book of Farmyard Tales, which includes 20 stories with 2 reading levels and a read-along c.d.* I'll have to get this order in soon, so take a minute now to donate securely by clicking on the link below. Thanks for helping to honor baby Aubrie by helping some special kids -- you truly are an Angel!

*The books listed are intended to give you an idea of how far your gift can go. I will work with Mollie to choose books that are best suited for the individual child who will receive them. If you'd like your contribution to be used for a particular book, please indicate it in a comment on this post. Thank you!

Friday, December 10, 2010

And the Winner Is...

Peace Love Ribbon Christmas Card
Create beautiful photo Christmas cards at
View the entire collection of cards.

Card #2! Thanks for all you input! All three designs had their fans, but in the end, the balanced composition of #2 won out. Enjoy the finished product! (And please don't be offended if you don't receive a card in the mail; we are doing family only this year...unless I get a surprise offer of employment from an early Santa. :) ) Wishing you each and all peace, love and joy this Christmas and throughout the year!

Wednesday, December 8, 2010

Weekly Weigh-In (Kind Of)

Well, apparently the "Weekly" part isn't even accurate these days!

Here's a recap of the past few weeks:

November 17 (regular Wednesday weigh-in): 8.95 kg (19 pounds, 12 ounces), 31 inches
November 24 (regular Wednesday weigh-in): 9.05 kg (20 POUNDS! Wohoo!), 31 inches
By the time we arrived at Grandma and Granddaddy's house for Thanksgiving that Wednesday night, Becca was running a little fever. It got worse over the next few days, peaking at 103.8 that weekend. By Saturday, I was on the phone with the pediatrician. From Saturday afternoon to Sunday evening, she was fever-free. Sunday night, the fever came back, and on Monday we went to see good ole Dr. Rawls. As always, they weighed her when checking her in:

November 29 (sick visit): 8.90 kg (19 pounds, 10 ounces) (We didn't do height.)

That meant that she was down 6 ounces in 5 days. Yuck. (Perhaps I should note here that when Becca gets any kind of illness, even if it's not stomach-related, she stops "tolerating her feeds," meaning that she throws up every night or morning...hence the loss of weight.)

The good doc determined that Becca had a "non-specific viral illness" that we just had to wait out. She wasn't feeling horrible, just tired, extra whiney and a little pitiful. I decided that when 2-year-olds get sick, their threshold for 2-year-old behaviors gets lowered. Anything could set off a tantrum, and heaven forbid if I didn't "Hold you!" all day long. I can't blame her, though. When I'm sick my threshold for 2-year-old behaviors drops, too. We watched a lot of t.v. but muddled through mostly in one piece.

On Wednesday, she was still running the fever (on day 8!), so we couldn't go to therapy, so we skipped the weigh-in as well. (It's usually done all in one trip.) Her fever finally broke for good on Thursday, and now she's still tiring quickly but doing fine. We never saw any respiratory symptoms, and the only GI symptom was directly related to the tube feeds (which we ended up slowing waaaaaaay down and mixing with Pedialyte to help with her toleration). She's back up to full feeds now, and we're back to our regular routine, which brings us to today's measurements:

December 8 (regular Wednesday weigh-in): 8.85 kg (19 pounds, 9 ounces), 32.5 inches;*

Which leaves us with a grand total of 100 grams (3 ounces) lost since November 17.

And that puts our net change, exactly 5 months from the day her g-tube was placed and about 4 months from the time we started growth hormone injections, at a weight gain of 1150 grams/35 ounces and a height gain of 3.5 inches.*

Even with the up and down months like this one, I feel like putting the tube in was a good decision. And the growth hormones are DEFINITELY a good decision (especially since she seems to be experiencing very few side effects from them and usually doesn't even mind the shot.) She's moving through clothing sizes now (currently in 12 months, but bumping up to some 18 months for the length), whereas she spent an entire year in 3-6 month clothes. That may not be the most scientific measurement, but from a mommy's point of view, that's a very good sign! Developmentally, she's picked up a lot of steam, too, and while it's impossible to pinpoint the tube feeds as the cause, having more consistent nutrition has definitely helped. If I had it to do all over again, I would probably push to have the g-tube placed when we were considering it in the NICU, but we had no way of knowing what the next 2 years would look like. Still, I'm glad we got it when we did - almost in the nick of time from some serious nutritional deficients. All's well that ends well, I guess.

*I highly doubt this height measurement is accurate.

Tuesday, December 7, 2010

Christmas Is a Season, Not a Day...

...and that's what I keep telling myself as the days of December click along without my getting ready for Christmas! Well, I guess I'm not doing too badly, thanks to my on-the-ball husband. (Okay, I admit it. His organized neuroticism can help me out at times.) We got the house decorated last weekend, and we've established a family Advent calendar tradition, which involves M&M's, making for one very happy little girl. I've actually got nearly all our shopping done - just some photo presents left to produce and order for the grandmothers. And that brings me to my final big project for the season: The Family Christmas Card.

Even though we are on major austerity program at the Hill House these days, I HAVE to send out at least a few cards. I always agonize over our Christmas cards, which I've only started sending since Becca was born. (That means that "always" means the past 2 years...which often feels like my entire life!) She's just so darn cute and adorable and any card I'm going to send out has to reflect her beautiful face and soul, and, frankly, not many card designs are good enough for my girl's face. (I'm sure you other moms know what I mean.) Not to mention the fact that, hey, I'm a pastor and see the card as an opportunity to give a gentle reminder of the true meaning of Christmas. (I'm not opposed to either the traditional secular Christmas symbols (Santa, etc) or to more generic holiday cards (especially since not everyone on our card list celebrates Christmas), but I do notice the theological nuances to certain card designs.)

But this year is easy! First off, our friend Jessica Kelley snapped some AWESOME pictures of us at in a somewhat impromptu photo session at Crockett park. When I saw this picture,

I knew I was looking at our Christmas card photo. So perfect. Such a Becca face. So full of joy and that Advent sense of expectation. And her bow even looks good. (I make them myself, so I get a little picky about that.) Usually just selecting the picture takes days, but before I even saw the rest of them (many of which would have made adorable cards, too), I knew this was the one. Step one, done.

Next I had to decide where to have our cards printed. I've used several different websites in the past, but have generally been happiest with the products I've gotten from Shutterfly. I particularly love the Super Hero birthday invitations I got from them for our own Super Baby's 1st birthday party. And so when I heard about this blog promotion, I knew we had a winner. You know how I love a good deal...and good pictures of my kiddo! Step two, done.

And here I am with step three...and I need your help. I've got to select a card design. This is usually the hardest step because it's difficult to find a design that works well with the chosen image, is theologically appropriate and matches our family's style (not too fancy or formal). However, Shutterfly's 2010 collection is so vast and varied that it was hard because there were so MANY great options! (You can see them all by clicking here (for Christmas cards) or here (for general holiday cards). I've narrowed it down to 3 options:

Card 1: Peace on Earth (their design names)

Card 2: Peace Love Ribbon

Card 3: Mod Love

I tried to share links for you to see them each with Becca's picture, but I can't figure out how to do it. It may not be possible (so as to keep you from just stealing their designs). But I bet you can use your imagination. Please do, as I'm letting my readers pick our family's card! I've set up a poll; it's in the right sidebar. Take a second to vote for your favorite design, and that's the one I'll order and send! Why, you ask, is such a control freak letting readers, many of whom are strangers, pick out our family's card? Because, of course, they are all adorable, so you really can't go wrong! :) Besides, I may never be able to decide without you. (In years past, I have gotten multiple designs simply because I can't pick a favorite. I might have issues.) I'll close the poll on Friday and call step three done.

Once you've picked my card, go check out the others to select yours! And remember, as long as we get them out in the 12 days of Christmas (which, by the way, begin with December 25th), we aren't late! :)

Monday, November 22, 2010

Mommy Brain

I have always had a bad habit of reading 5 (or so) books at once. Reading concurrently does not in itself necessarily prevent me from finishing a book. Still, throughout my life, it has not been unusual for me to start a book, get bored or distracted and set it aside for...ever. However, since Becca came along, I've noticed a worsening trend. Here's the pile on my nightstand:

That's 14 books. 14 good ones, in fact. 14 books that I am going to read. 14 books that provide a pretty good cross-section of my literary interests. They are, from bottom up:
  1. Eats, Shoots & Leaves by Lynne Truss (the most entertaining book ever written about punctuation);
  2. Capital Crimes by Johnathan and Faye Kellerman (love me some trashy mystery novels!);
  3. The Year of Living Biblically: One Man's Humble Quest to Follow the Bible as Literally as Possible by A. J. Jacobs (in which Jacobs attempts to follow ALL of the laws in the Old Testament over the course of a year);
  4. The Obama Victory: How Media, Money and Message Shaped the 2008 Election by Kate Kenski, Bruce W. Hardy and Kathleen Hall Jamieson (so proud to call preemie mom and author Kate Kenski a friend...and a friend who writes well on relevant topics, to boot!);
  5. The Out of Sync Child: Recognizing and Coping with Sensory Processing Disorder by Carol Stock Kranowitz;
  6. Bird by Bird: Some Instructions on Writing and Life by Anne Lamott (one of my all-time favorite authors!);
  7. God Does Not...Entertain, Play Match-maker, Hurry, Demand Blood, Cure Every Illness, edited by D. Brent Laytham (a series of essays refuting the, to steal a phrase from my husband, "vending machine" theology of God and prayer (you put your prayers in and get your candy out));
  8. Men Are from Mars; Women Are from Venus: The Classic Guide to Understanding the Opposite Sex by John Gray (seriously, I've been in ministry for 6 years and married for 5, and I haven't read this book?);
  9. Harry Potter and the Prisoner of Azkaban by, of course, J. K. Rowling (I use Harry Potter books the way many people use mashed potatoes...familiar comfort.);
  10. Agatha Christie: Five Complete Novels (not-so-trashy mystery novels);
  11. The Complete Idiot's Guide to Creative Writing by Laurie E. Rozakis (trying to refine my craft a bit);
  12. Boundaries: When to Say Yes, When to Say No to Take Control of Your Life by Henry Cloud and John Townsend (and I can tell you exactly why I still haven't finished this book: it describes my life and issues so accurately that it's downright painful to read...but it is SO helpful as well);
  13. The Moms' Book for the Mom Who's Best at Everything by Alison Maloney ('cause it's totally about me, duh); and
  14. The Hunger Games by Suzanne Collins (fabulous and thought-provoking fiction).
Since this picture was taken, I've finished The Hunger Games and added The Best American Mystery Stories of the Century (edited by Tony Hillerman), Acedia & me: A Marriage, Monks, and a Writer's Life (by Kathleen Norris, another favorite) and Poppy's Secret Wish by Ann Bryant (one of my Usborne books that I'm previewing for kids whose reading level is advanced beyond their maturity (cough, cough...Riley Speas...cough, cough).

That's a tall pile. 16 books tall, actually. And it's no coincidence that the book I did finish is considered young adult fiction (about the same reading level as Harry Potter) and that one of the books I added is a volume of short stories. I really, really do want to read all the books in the pile. I really, really will (eventually) read all the books in this pile. But not any time soon, it seems.

I am actually still reading the few minutes I get to sit down each the bathroom...when Becca isn't visiting me...and then it's almost always magazines, usuallyNewsweek or (sometimes) Parenting.

Am I alone here? Parents of young kids, are you reading? How do you make the time? And what are you reading? What's the verdict, then? Is this just a magazine phase of life?

Saturday, November 20, 2010

Oh yeah....

My eggo is NOT preggo. I don't really want to talk about it, but I thought I shouldn't leave you hanging.

I'm not taking the fertility drugs this month. (With all the holiday travel and family time, there's more than enough crazy to go around without them.) On Monday I'm having a sonahistagram (sp.?) done to check for any abnormal scarring or adhesions on my uterus from my c-section. I'm still having pain, nearly 2.5 years post-surgery, so the doc thought we ought to check it out, especially since I didn't exactly take it easy in my recovery period. (There was a little bit going on then, remember? A baby that could crash at any time and a new house and a new job and a new church and limited maternity leave and...yeah.)

And that's that for now.

Friday, November 19, 2010

Weekly Weigh-In

Last week: 8.9 kg (19 pounds, 10 ounces), 31 inches
This week: 8.95 (19 pounds, 12 ounces), 31 inches (though we had an endocrine appt. yesterday, and she had hit 9.0 kgs exactly, but I don't want to throw the weekly pacing off)
Week's change: +50 grams/2 ounces, +/- 0 inches
Net change (since July): +1250 grams/38 ounces, +2 inches

Slower than the past 2 weeks, but still gaining!

Thursday, November 18, 2010

The Naked Chef

My apologies to Jamie Oliver, but this is too cute not to share...

And on a proper developmental note, we are seeing Becca play pretend with things more and more. I'm sure I had to eat whatever it was she was preparing in the kitchen. It is not at all unusual to have to do everything that we do to/with Becca to/with Puppy or Elmo. And it's beyond adorable when she makes them dance or ride her bike. (Yes, a bike...more on that after Thanksgiving when she officially receives it!)

Here's a picture of snacktime with Puppy. He HAD to sit in the highchair, and he HAD to have Cheerios.

She sat in the big girl chair (on top of a large cookbook - thanks, Aunt Susie! :) ) and also ate Cheerios.

Wednesday, November 17, 2010

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.

Tuesday, November 16, 2010

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!

Thursday, November 11, 2010

Weekly Weigh-In

Last week: 8.75 kg (19 pounds, 4 ounces), 30.5 inches
This week: 8.9 kg (19 pounds, 10 ounces), 31 inches
Week's change: +150 grams/6 ounces, +0.5 inch
Net change (since July): +1200 grams/36 ounces, +2 inches

That's right; another 6-ounce gain (and back on our regular scale), meaning that she's gained very nearly her birthweight in 2 weeks! Still no puke at night and just a little puke at meals - I'm not changing a THING!

Sunday, November 7, 2010

Poop Doctor Follow-Up

We saw GI last week for another follow-up. Though he's one of my favorites, he's still the poop doctor. We didn't have to take in a sample this time, but Becca oh-so-graciously decided to break her 3-day poop strike while we were in his office. This was actually really handy because he decided he did want a sample after all. Thanks, Becca.

This visit replaced our normal weigh-in at the pediatrician's office, so she was on a different scale and measuring table...which is important to note when you look at these measurements.

Last weeks ago: 8.55 kg (18 pounds, 14 ounces), 31 inches
This week: 8.75 kg (19 pounds, 4 ounces), 30.5 inches
Week's change: +200 grams/6 ounces, -0.5 inch
Net change: +1050 grams/30 ounces, +1.5 inches

WOWZAS! Some of that weight gain can be attributed to the change in scales, but some of it has to be due to the fact that.....

....wait for it...


So maybe the secret to her growth is not so much in adding calories everywhere possible (though I'm sure her Halloween candy did help), but in keeping what she eats in her stomach. Novel concept, I know. She did throw up during her snack yesterday afternoon (because she gagged on her apple), but she hasn't thrown up during her tube feedings in 9 days! We are, of course, ecstatic for many reasons, not the least of which is that we were d.o.n.e. with vomit. Every parent has to wake up in the middle of the night and clean up vomit occasionally, but every night, whether we were at home or travelling had gotten pretty old. I'm not so naive as to think that we've bid a final adieu to our vomity child, but it sure has been nice to have a break. Any maybe now the doctors and nutritionists will listen to me when I say stopping the vomit is a priority. (Heretofore, they generally have been wanting us to get every possible drop of formula in her.) After her stomach bug last week, we cut way back on her nightly feeds and are just now bumping back up her rate...I don't know, maybe they just can't imagine the amount of vomit we see in the night or in the mornings when she throws's a lot of formula and calories down the drain (and in her hair, and all over her pajamas, and soaking her sheets, and covering her blankey, Lamby, bear, and pacis), so to speak. (We even stopped giving her regular baths at bedtime because we knew she'd just end up back in the bath in a few hours.)

Anyway, the doc was happy with her weight gain, so we're not changing much, but since we are dealing with a lot of vomit, he wanted the poop sample so that he could double-check some of the findings from her scope this summer. Apparently she had a small area of inflammation in her bowels that he didn't think much of at the time, but it could be a sign of some kind of infection that could be causing the upchucking. (Wow, haven't heard that word in a long time!) Also, if she keeps tossing her cookies (nice the '90's!), he's going to change her reflux prescription from Zantac (or "minty fresh," as we've come to call it - Becca LOVES the "mint" (i.e. medicine) flavor!) to something stronger that not only neutralizes the acid in her stomach but reduces the overall amount of gastric juices.

For now, though, I'm just grateful for every night and morning that goes by without my baby covered in puke! :)

And just because I haven't posted pictures in a while, here's a little teaser from Halloween!

Tuesday, November 2, 2010

Report Cards

Becca LOVES school, which she very adorably calls "tool". She loves her friends (one of whom is an old NICU buddy! Let's hear it for Pod E!), she loves her teachers, she loves the toys, she loves the playground, she loves everything about school. If you ask her, she'll tell you that she wants to go to school every day. (Right now she goes for 2 hours on one morning.) Which is one reason I am furiously trying to find a job. (No 2nd income = no $ for school...though I wouldn't mind all the free time!)

Because Becca's school (W.A.V.E.S.) is a special instruction classroom for Tennessee Early Intervention, she has an Individualized Family Service Plan with goals, outcomes, etc. (It's the toddler version of an IEP.) We need to do some updating on her goals (especially regarding snack time!), but right now her school goals are:
  1. Initiate social contact with others during 2 play activities.
  2. Use words and gestures to communicate wants and needs during 2 classroom activities.
  3. Walk independently from place to place during 4 classroom routines. (This includes stepping from surface to surface on the playground.)

We get a progress report every month, and this month I was excited to see that she is doing each these things "all of the time" with "very little help." What a big girl!

What I love most about these progress reports, though, is the few sentences her teachers write to summarize her progress. Here's what this month's note said:

"PROGRESS: Becca continues to become more active in the classroom, moving from place to place in order to participate in a variety of activities. She uses words to request and to identify objects, pictures and people when asked and approaches friends to join play activities."

Here's what I hear/see when I read it:

"PROGRESS: Becca is the most adorable child ever. She is very independent and is walking everywhere! She is a genius and enjoys sharing her genius with her many friends in class. We just want to squeeze on her all day long!"

I know it's no summa cum laude or anything, but I couldn't be prouder!

I could be out of control by the time she gets to kindergarten!

Wednesday, October 27, 2010

Hot Date

So, tonight was Trunk or Treat at church (more on that later). Becca and I dressed as dogs.

Afterwards, I took my husband on a really hot date to Kroger while Grandma put Becca to bed. We're standing in the baking goods aisle (after walking halfway through the store), and John bursts out laughing (which, frankly, doesn't happen all that much), and says, "You still have a tail on."

Oops. I had removed the rest of my costume (including the painted on whiskers) but left the tail. Which hooks on my belt. Which meant I had to either continue wearing the tail or take my belt off in front of the brownie mixes in order to remove the tail. I'm in a quandary. I'm paralyzed. Someone walks into the aisle, and I feel compelled to say, "I've just been informed that I'm still wearing a tail." That elicited an interesting look.

I opted to remove the belt and take the tail off. I think that may be the first and last time that I undressed in Kroger. But then again, I would be all that surprised if it came up again.

Wednesday, October 20, 2010

Wednesday Weigh-In

Two weeks ago: 8.50 kg (18 pounds, 12 ounces), 30.5 inches
(We were out of town last week.)
This week: 8.55 kg (18 pounds, 14 ounces), 31 inches
Two weeks' change: +50 grams/2 ounces, +0.5 inch
Net change: +850 grams/30 ounces, +2 inches

Still not good in the weight department. Since the beginning of October, Becca hasn't gained any weight. (Two weeks ago she dropped weight, so this week's increase just bumps her back up.) She has, however gotten taller - 1.5 inches in 3 weeks, if you believe the measurements. (She's definitely taller, but I'm not sure I buy a 1/2 an inch a week...but who knows.) I'm grateful for the height increase, since we can't really make that up later like we can weight, but we really do need to see some more weight on her. Even when I am generous and use her adjusted age AND round her weight up, here's what the CDC BMI calculator tells me:

BMI Calculator for Child and Teen Calculate again:English | Metric

Information Entered

Age: 2 years 1 month

Birth Date: September 14, 2008 Height: 2 feet 7 inch(es)
Date of Measurement: October 20, 2010 Weight: 19 pounds

Based on the height and weight entered, the BMI is 13.9 , placing the BMI-for-age at the 1st percentile for girls aged 2 years 1 month. This child is underweight and should be seen by a healthcare provider for further assessment to determine possible causes of underweight.

BMI Range: Underweight

yellow underweight, less than the 5th percentile
green healthy weight, 5th percentile up to the 85th percentile
orange overweight, 85th to less than the 95th percentile
red obese, equal to or greater than the 95th percentile
(After LOTS of conversations with her doctors and nutritionists, we have all finally agreed that the BMI is the best measurement to evaluate instead of those silly weight-for-length charts that don't make any sense for her case.)

So, what do we do? Well, first off, we've got a prescription for a super-duper juice called Enlive. It's got some added protein and nutrients, but probably most importantly, it's got 250 calories per 8 ounce serving (unlike the usual 120-ish calories in regular juice). We are trying to get her to drink one juice box a day. This week's she's finished off one about every 1.5 days, so we're getting there. Becca loves juice, so I think this will be a really good way to supplement her oral feedings. We are also bolusing her 1-2 ounces of formula during the day if she doesn't eat at a meal. (Bolusing means that I give her a large amount in her button all at once instead of letting the pump give it to her over an extended period of time.) I'm still getting the hang of this, and she doesn't like it, which makes it difficult and messy. I have some hesitation with this technique because I want her to learn to satisfy her hunger by eating orally, but in the meantime, the kid's got to get some nutrition in her. We can't just bump up the volume on her night feeds because she tends to throw up in the morning when she's too full, and that really defeats the purpose!

She's not eating great (usually not even good), but I think the biggest issue is that she is burning so darn much energy! Really, I think she is busy even for a 2-year-old (and I've dealt with more than my share of 2-year-olds over the years), even though she can sit still and read books for 20 minutes or so. She is e.v.e.r.y.w.h.e.r.e and usually dancing, which means that she is stomping, spinning in a circle, waving her arms and squealing ALL AT THE SAME TIME. Hilarious. I'll try to get video for you. So, many of the calories that do make their way into her little body are expended through being a two-year-old...but that's what they are for, after all! And I'm not about to try to slow this kid down!

(On the positive side, though, I seem to be 10 pounds below my pre-Becca weight...not sure how that happened, but I'll take it!)