How I Wonder

Becca sings a lot.  And it's adorable.  Every now and then she'll actually get through a song, but she typically just repeats a line over and over in a somewhat melodic fashion.  I don't know if she's fixating on it or if her mind is getting stuck or if she just likes how it sounds/feels.  It cracks me up, though.  Here she is singing "Twinkle, Twinkle" - minus the whole twinkle bit.  :)

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RocketGirl

Just in case the doctor bit doesn't work out, Becca's still considering a career as an astronaut.  Or a rocket.

 
p.s. Cheap mom tip: almost all of our dress up outfits, including this rocket and the Tinkerbell costume she wore to the ballet Halloween parade, were purchased the week after Halloween, last year at 90% and this year at 70% off.  (Now that I'm gainfully employed, I decided the time it would take to make another trip to Target later in the week when they had been marked down again was worth paying the extra 20%.  :) )

Community Helpers

Becca's class has been doing a unit on community helpers, learning about public servants like firefighters, police officers, teachers, construction workers, mail carriers, nurses, and doctors.  At the end of the unit, they had "Dress Like a Community Helper" day.  Not surprisingly, Becca chose to dress like one of the helpers she is way too familiar with - a doctor.  Apparently, the day before, when they talked about doctors, Becca told the class everything a doctor does at an appointment.  It seems she's been through a few of those.  :)  Here's our Dr. Becca!

Even Though She's Very Small...

...inside she's very TALL!  

After Trunk-or-Treating as a very SCARY MONSTER at church and dancing as Tinkerbell at ballet, Becca finally settled on (with my, um, encouragement) being Madeline for real trick-or-treating.  I was really excited about this idea because she's been on a Madeline kick lately, she's as adorable, tiny and mischievous as Madeline, and it was the warmest of the three costumes, which became important by Halloween night.  It was an assembled-at-home costume, thanks mostly to the adorable blue wool coat we picked up at our church's clothing giveaway this fall.  Add a peter pan collar and a red bow, and voila! - Madeline.  Or, at least, close enough to Madeline to convince a 3-year-old.

We had a great time hanging out with our friends (and Becca's other family), the Lovells, where Halloween night is a BIG deal.  They don't mess around with the candy.  Here's what they had to give out:

And, yes, those are full-sized candy bars!  And, yes, if you answer your question correctly, you get several of them!  Tammy is 3rd-grade teacher, so she knows just what kind of question each kid ought to be able to answer.  She even made me explain the difference between Arminianism and Calvinism.  Makes me think that the Board of Ordained Ministry might be well-served to pass out chocolate as they ask their questions.

But back to Becca.  She had a great time being Madeline...

I had a great time being a butterfly (and silly!)...

And John had a good time being...John!  (Actually, he wasn't feeling too hot, so he bailed shortly after we took Becca around the cul-de-sac.)

Becca even picked up a little French!

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The Fine Line Between Compassion and Anxiety

Becca is a very compassionate child.  I like to think she gets that from her mother.

Becca is an anxious child.  I know she gets that from her mother.

If someone around her gets hurt or isn't feeling well, Becca will be very, very sweet to him or her.  She's extremely kind in that sense (not so much in the I-going-to-snatch-whatever-toy-you-have-that-I-want or I'm-angry-so-I-will-hit-you-in-the-face sense, though), and she's naturally empathetic.  For example, I've been having some trouble with my lungs lately.  If I tell her that I can't get up and play with her because my lungs hurt, she'll say, "Your yungs not working?  Oh, I'm sorry, honey.  I will give you a hug to feel you better.  Maybe go see Dr. Wawls to feel you better, too." All while patting me on the back and giving me said hugs, plus some kisses to boot.  Super duper sweet.  She immediately thinks about what she would want and need done if she were sick and does it.  And while it doesn't help my lungs, it definitely does "feel me better."

I think I've mentioned on here before that we've been seeing signs of excessive anxiety in Becca for a while now.  Like I said, I know she gets that from me - I've been diagnosed with an anxiety disorder for, well, I don't know how long (turns out that the docs don't automatically tell you your diagnosis...but that's another story!).  Years, though.  Before Becca came into the picture.  While I certainly have very little to complain about these days, neither Becca nor I have exactly lived a charmed life, and those kinds of experiences (emotional and physical) leave scars that can trigger the Speas family genetic predisposition towards anxiety and depression.  Becca's anxiety is also tied into/exacerbated by her sensory issues.  The world feels "off" to her physically, she can't confidently navigate her surroundings, and she is very concerned with how things appear - dirty hands, high chairs, etc. freak her out.  Her anxiety keeps her from eating.  For example, if you present a large plate of food with several different options on it, you may be thinking, "Hey, I'm giving her lots of options so that she can pick what she wants and leave what she doesn't.  There's so much on here that surely she'll want something from it!"  That's great, but what she sees is a huge plate of food full of stuff she can't bring herself to eat and, wow, there's now way I can eat all of that so I'm totally overwhelmed and freaking out so I'll just throw the whole plate.  (Okay, we've generally speaking moved past the plate-throwing, but I think you see what I'm getting at.)  She also fixates on things that trigger her anxiety - simple things like a sticker being ripped.  "We got to fix it!  We got to fix it!"  And -- and here's the flipside of the compassion -- if she sees someone get hurt, it really disturbs her.  Not just in the little kid oh-that's-scary sort of way - in the I-have-to-see-it-fixed-and-that-everyone-is-okay-and-I-won't-even-be-distracted-by-chocolate-or-Strawberry Shortcake-kind-of-way.

It's not surprising, really, that you'd see both characteristics in us.  There's a very fine line between compassion and anxiety.  In fact, I think I'll go out on a limb and say that one of the things that makes us compassionate is our anxiety.  Anxiety comes with an unfortunate kind of imagination - the ability to imagine anything that could possibly go wrong.  And I can't speak for Becca on this, but for me, with that imagination comes a sense of how it might feel if each horrible scenario were to play out.  Of course, I know I could never know what it's like to have this or that happen, but my anxiety (and life!) puts me in touch with enough of my own pain to be able to begin to sense what others are going through...to begin to "suffer with" (you know, com-passion) the other.  And the constant vigilance of anxiety helps us to notice when people around us are hurting.  I'm not saying that anxiety is always a good thing or that anxious people are automatically compassionate (I mean, look at Mr. Monk) or that we shouldn't try to (as Jesus said) "let not our hearts be troubled," but I not convinced anxiety is not without its gifts.

Desmond Tutu says (among many, many other great and wonderful words) that "our suffering can either ennoble us or embitter us."  I'll be honest.  Lately, as I've been looking back over my life, it's been very easy to be bitter.  Please, spare me the lecture on how lucky I am that my daughter survived, that I've got a job I love and a roof over my head, I know all that, and I DO appreciate it.  But, honestly, there is plenty to make me bitter, too.  My life has not been easy.  And Lord knows Becca's life has been anything but -- hate to say it -- fair.  But I want desperately for our wounds and broken places to ennoble us.  I trust that they occasionally do and, as time goes on, they will more and more.  I'm trying to raise my daughter in such a way that her coin of compassion and anxiety is more heavily weighted towards compassion.  I can't take away the hurt or the pain or the rough start or the continuing difficulties she faces...but I can help her flip the coin.

Feeding Therapy Victory!

Yes, we are alive. And here's proof. Hooray for the chocolately, protein-y goodness of Nutella! That's a way for a girl to get some calories!

Decisions, Decisions...

I seem to be, um, starting a cycle on my own, which is kind of awesome because, hey, maybe my ovaries do remember how to work without the drugs, but still kind of sucks because, wow, wouldn't it have been cool if we were one of those very, very, very, very, very rare couples that you always hear about who get pregnant right after they stop trying? but we're not.

So now I've got some decisions to make.  And I say "I" because John is good with whatever course of action I'm willing to pursue.  We could see the doc ASAP, grab some meds, maybe do another cycle of IUI.  I could get a fancy (several hundred $) fertility monitor that *might* work for tracking my cycles and see if we just time things right if something might take.  We could suck it up and dole out the cash and see a reproductive endocrinologist (the infertility specialist for which we have no insurance coverage).  Or we could let it go and pursue growing our family through adoption (which, as it turns out, is not typically that much easier, smoother or financially cheaper than the expensive fertility treatments).  Or we could just call it quits and be "one and done." 

It's hard to know what to do.  Mary Chapin Carpenter's got a line that I love - don't even remember the name of the song, might be "Quittin' Time," but the line is that "it's so hard quitting when it's quittin' time."  Even if you were ready to quit before (and I definitely was!), it's really hard to quit something you want/love badly when the time actually comes around to quit.  In this case, I don't know if I'm having a hard time letting go because I'm not really ready to or if I'm just holding on because it's so hard quitting when it's quittin' time.

It probably doesn't help that this is all happening while my lungs are misbehaving so I'm on a week-long pulse of oral steroids that have acting crazy.  I'm nutty.  Much like on Clomid, but with waaaaay more energy.  Interestingly, I haven't had a huge appetite like most folks do when they are on steroids.  My mother-in-law, who has been on steroids forever, it seems (I'm sure to her!), told me once that they make most people so ravenous that as you are finishing one snack/meal/etc., you are immediately thinking about what you are going to eat next.  I, on the other hand and in totally uncharacteristic fashion, have had less of an appetite...so I'm thinking that maybe what I need is to be on steroids all the time.  More energy, less appetite is a good deal.  Except that I'm nutty.  Like nutty nutty.  Which made a 3-hour worship planning meeting interesting for everyone today.  So maybe keep the steroids to the weekend.  And after I've figured out what we're going to do with our family.  'Cause wow - steroids AND fertility treatments?  Pretty sure our house would explode.  Big explode.

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!"

Ring Around the Rosie!

I love this video for so many reasons, but the chief one is that you can see Becca's personality so clearly.  The girl owns the room.  Even if the room is outside of Pancho's after trivia.  And even if the crowd is group of people many times her age.  I swear, Becca gets adults to do thing they would never do otherwise.  I mean, I guess if any group of adults would play Ring around the Roses in public, it would be the Lovells and the Prices, but still...if I ever need a raise (which I don't), I think I'm sending Becca to the staff-parish meeting to ask for it.  And so again, I say, this kid will either be president of the United States or a band director.  See for yourself!

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Becca Hill, Minister of Music

Okay, I know I'm going a little video-crazy this week, but I just can't wait to show you this one. John was playing guitar instead of reading books at bedtime, and Becca was WAY into it. Note the guitar on her pajamas - she was totally rocking out on it and then she switched to the xylephone and grabbed her stole. She really wanted that stole to stay diagonal like our music minister Anne's. And that would be "Alleluia," she is screami--I mean--singing. And then she makes her directoral debut...which I happily dedicate to the hand-waving Uncle Doug and Anne Hook!

 

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Stuff I Hear A Lot Addendum

Two I can't believe I forgot:

* Wassat noise? ("What's that noise?" which is not exactly affirming when the "noise" in question is Mommy's singing.)
* Wha happened? (If she gets hurt, if she trips, if she drops something, etc. I think it stems from her lack of bodily awareness - all of a sudden she's on the floor, and she doesn't know how she got there - and it's really adorable, even when she says it through tears.)

And, by request, the translation of "Hodjoooooo!" is, "Hold you!" which actually means, "Hold me!"

Next Time Won't You...?

So we get a little distracted at the end...she's only 3!

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Stuff I Hear a Lot

* What you DOing?
*  Mommy, hodjooooooo!
*  Where ___ go?
*  What's ___ doing?  (And often the ____ is something inanimate, making for some awkward answers.  Ummm...the couch is sitting there?  Your food is waiting for you to eat it?)
*  Hep me!
*  I no want to ____.
*  Where Dam?  (Where's Graham - see Tiny Dancer post)
*  Where we going?
*  Hodjooooo!  (in the car)
*  I no yike ____ .
*  Wader bottle!  Wader bottle!  I need wader bottle!
*  I'ma pick!  (I'm gonna pick!)
*  I need wipe my hands!
*  (If a take a split second to respond to the above statement) Wipe my haaaaaaaands!
*  Dere's da chuch!  (Not that we're there much or anything.)
*  I'm a pincess!  You a pincess, too?  (Only if we are wearing dresses, but every time we wear dresses.)
*  I do bayet!  
*  No, Busser!  No, Sasa!
*  You BAD!  (My least favorite thing to hear.  I leaves me wondering where she learned it.  I'm guessing it was something the kids at school started doing especially since she thinks it's hilarious.)
*  I needa time-out!  (And she's usually right.)
*  Wing around da rosies?
* SCIENCE KID IN DA HO-USE!
And, of course, my favorite * I yub you!

Becca's Famous Again!

But this time it's my fault:  http://www.ministrymatters.com/teach/.  :)

Tiny Dancer

Becca has started ballet class! We tried a 4-day "camp" to see if she liked it. She had one lesson a day for 4 days straight...and at the end of every day, she was saying, "Mo-wah!" (and signing it, so we know she REALLY meant it), so we we're starting regular classes in the fall. She was pretty hilarious, definitely the smallest in her 3-year-old class (by far) and unable to do a lot of the skills the other girls could do (like hopping), but all over the place and having a big ole time. Let's just say that watching her class made me smile a lot in a week that I really needed some reasons to smile. And really, looking at this sweet girl, was there any way NOT to smile?

The tiniest of dancers

Posing with her new backpack for big kid school

Hammin' it up - thank God it's a recital year!

Laughing (as usual) with BFF's Graham and Tammy

The Mama Who Won't Be

Ever since I began pondering my life as a (future) mother, I have said that I would like to have a biological child and an adopted child. I had thought that I would get married, get pregnant as soon as we wanted me to, have a full 9 months (really 10)of "root beer floats and bliss" (as the kick-ass Dr. Nancy Snyderman said this morning on the Today Show), squeeze out a fat, happy baby, take him or her home and go about my merry way of motherhood. Eventually, once we had seen the glory of our dreams of biological progeny realized, I'd set about saving the world, one orphan at a time. (And yes, that's what I thought adoption was: giving a loving home to an abandoned orphan. Turns out that's not really what is going on in U.S. adoptions these days - it's more of a brave, strong birthmother making the hardest choice in the world for the good of her little baby and giving loving waiting families the gift of their dreams. But I digress.) I've known for a long time that I could love a non-biological child as my own, without reservation, and my plan seemed failproof - the best of both worlds. That's the mama I wanted to be.

Then I actually got married and eventually became pregnant (a little later than we had hoped), and, well, beginning at week 15, the shit hit the fan. You know the rest of that chapter: fatal prognosis after prognosis, hospitalization, pre-eclampsia, H.E.L.L.P. syndrome, Becca, NICU, therapy, isolation, rehospitalizations, special needs and (a teaser for an upcoming post) the cutest ballerina in the world.

Well, once your plans go awry, or at least once my plans go awry, it becomes exponentially more important for those plans to get back on course somehow, anyhow. We knew that we wanted another child, and that desire has become increasingly, well, desperate over the past 2 years as we have tried to conceive again. We want another child. I want to be pregnant. I want to be fat and waddley and to have showers (and not cancel them) and eat and celebrate and do everything pregnant women get to do without expecting my child to die. I want it. Even with my risks, even with the complication of already having a child with special needs, even with my going back to work. I want it even more than I ever wanted to be pregnant before Becca. So we've tried and tried and tried and tried, and this time we even tried by doing intrauterine insemination (IUI). If I couldn't be the mama I originally hoped to be, I could be this mama. I so wanted to be this mama.

I'm not. Nothing seems to be working. We won't do IVF (for a variety of reason, not the least of which is the cost). We could do more rounds of IUI, though with each round, I get closer to the point at which the medicines have been documented to raise a woman's risk of ovarian cancer. We could continue to push my body to do what we want it to do, even though what would be considered a success could very easily turn out to be extremely dangerous to my body. Put it that way, and I can completely understand why my body might be protesting. The body's self-preservation instinct is very strong, and we women's bodies in particular are very, very smart. My sense is that it's time to stop pushing and acknowledge the fact(? liklihood?) that I won't be that mama, either.

But still, our family is not complete.* As a friend said a few months ago when I was feeling guilty about grieving my infertility when I am already a mother and have a child, "You can't explain it. You just know when your family is complete. And yours isn't." It's not. And I have a lot of grief around my inability to conceive, the liklihood that I will never again have the moment of peeing on a stick and seeing the double lines (Lord knows I've peed on enough sticks over the past 2 years and only seen one line), that I will never feel a child moving inside me again (and never be able to feel it from the outside, either - Becca was too small for such shenanigans), that I will never breastfeed a child, that I will never have that painful and exhilirating moment of realization that labor is actually beginning, that I'll never deliver a baby and hold him or her in the delivery room (or anytime in the child's first 3.5 weeks of life), etc., etc. I could go on, but I think you get the drift. I'm grieving the loss of this potential pregnancy, but I'm also having to revisit the grief surrounding Becca's pregnancy and early arrival. To be perfectly honest, it sucks. There's just something so wrong about someone who has spent nearly her entire life taking care of other people's chilren not being able to have her own healthy child. It's just wrong.

But life is wrong. Shoulds and shouldn'ts don't really seem to count for anything. To quote another brilliant friend with too much experience in the hard knocks of life, "You get what you get." You deal with the cards you're dealt, and you (eventually) move on.

But life is also funny sometimes. You may see where this is going, but flashback with me to my original vision of motherhood. I wanted a biological child. Check. Then I wanted to adopt a child. Hmmm...could we possibly eventually end up with a check there, too? Maybe I will get what I wanted in the first place after all? We're really just beginning to survey our options concerning our family, but adoption is certainly on the table. Or maybe it's across the room, and we're gazing curiously at it. We'll see. We've still got a lot of grieving and discerning to do, but we'll see.

So all of that is to say, this isn't the road that I had hoped to travel, if you will. But I'm still holding out hope that the road we are on will turn out to have been exactly what we wanted after all, albeit with a whole darn lot of ugly and frustrating construction along the way. Right now we may be seeing through the mirror dimly, and in the end our family will turn out be even more amazing and blessed than I had ever before imagined. I might know the mama I won't be, but I've yet to see the mama I will be. I hear her life is pretty awesome, too.

*John takes issue with this term. He says that it implies that our family is incomplete, like having one child isn't a complete family and that Becca isn't enough. I certainly see his point, but I can't come up with a better way to express what I'm feeling, that I just know that our family needs to and will grow. Maybe that's a better way to put it.

Pigtails

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.

Animal Cruelty

And I encouraged it. 

Photo and video editing at www.OneTrueMedia.com

Becca at 3

Yep, that's right!  Itty Bitty Baby Becca is now THREE YEARS OLD!  Is anyone as aghast at the fact as I am?  I mean, when I think about my pregnancy, her birth, the NICU, etc., it seems like a long time ago - that could have happened 3 years ago.  But for her to be a 3-year-old?  No way.

But she definitely is!  How do I know?  Because of the questions!  For some (blessed) reason, the "why's" haven't started yet, but all. the. time. I hear, "Wass dat noise, Mommy?"  "Where going, Mommy?"  "Who's dat, Mommy?" and (possibly the cutest), "How you today, Mommy?" 

Three can be known as a tough age among parents.  I've always particularly loved 3-year-olds.  They are just getting to the point where you can have a real conversation with them, they are inquisitive (see above), and they are starting to play pretend and be more interactive in their play. Yes, they are also amazingly defiant and tedious, but I have preferred that to the know-it-all-ness of 4-year-olds and 2-year-olds' inability to communicate.  I'll go on record at the beginning of this 3-year-old year as saying that I love having a 3-year-old.  We'll see how that affinity develops (or deteriorates) as we move through the year, eh?

I want to save all of her medical and developmental updates for another post and dedicate this post as a snapshot of Becca's personality at the moment.  (And, as we know, the 3-year-old personality can change on a dime!)  So here's Becca at 3:

• Becca LOVES people.  Her first word was "hi!", and she remains as social as she was back then.  She is very mom-clingy right now, but once she's separated from me, she'll play and talk with anyone.  I see us introducing the concept of strangers very soon, though I kind of hate to do it. 
• She's very polite.  Kind of.  I mean, she'll scream bloody murder if you don't do what she wants, she'll stomp and collapse on the ground and throw a fit, etc.  But she loves to say "please," "thank you," and "you're welcome."  Oh, and "fuffe me," which roughly translates to, "Excuse me."  She particularly loves to say thank you and will say it about 15 times before she moves on.  She even thanks the elevator for taking her to another floor.  Seriously.
• She's still a water baby.  I'll have more photographic evidence of it for you later, but she loves all things water.  Bath, pool, hose, and, of course, drinking the delicious no-calorie water. 
• She's funny.  She's got a great sense of humor and loves to laugh and to make you laugh.  Sometimes she just laughs because it feels good.  She loves to be silly, and particularly loves to be a scary monster and roar at you, and THEN erupt into a full-body laugh. 
• Becca doesn't care about eating but loves chocolate chips.
• She's just really gotten the hang of playing pretend, so toys like her kitchen and dress up outfits are getting some new use.  She particularly loves to sell ice cream out of the window of her playhouse that Nana and GG got her for her birthday. 
• She's definitely in another Mommy phase but has SO MUCH FUN playing with Daddy.
• About 65% of the time, she wants to be an astronaut.  The other 35%, she wants to be a doctor.  I did hear teacher mentioned once.
• She's great at puzzles and like everything to be in its place.  Very John Hill there.  (Oh, and that's another question I hear a lot: "Wheres dat goes?") 
• Becca loves music and is a dancing QUEEN.  Specifically, she is the dancing queen of  a small South American village where they drum, stomp and spin a lot.  It's quite the sight to behold. 
• The current PBS obsession is "Sid the Science Kid."  I used to find this show annoying, but it's grown on me.  Especially when Becca walked up to the front door and said, "Science kid in the hoow-uuuuse!" 

I could go on, but I'm hungry and what you really probably want is pictures anyway.  So here you go!

At Sesame Street Live, doing what she did a lot of the show - not paying attention!

Wagon ride to the beach!  (More beach pics to come.)

Scaring the alligator!

Sporting her new dragon p.j.'s. 
She seems to prefer the boys' pajama patterns more than the girls'.  Whatever!



Pretty in pigtails!

Crazy June

Wonder what we are up to these days?  This article, written at #1 of 2 United Methodist Annual Conferences we are attending, about sums up my life these days!  (And, yes, I'm published on a REAL professional website!  It's been a while!)

Ministry Matters: Countdown to VBS

Enjoy!  Thanks to Jessica at Ministry Matters for the opportunity!

Update on Mommy

Remember how I keep telling you that there is so much exciting going on in our lives and oh won't it be great when I actually tell you and wow what a creative way of sharing news and oh aren't we happy about it?  Apparently my internal hype about the amazing post I'm going to write keeps me from actually writing anything.  Which gets us nowhere.  Welcome to my life.*  So I'm just going to very mundanely tell you what's going on with me. 


First off, I am done working at the March of Dimes, which is kind of sad.  It would be really sad if I weren't going to continue to be involved with them and their wonderful staff, but of course I will be.  Remember my kid whose life they helped save?  Yeah, that one.  I'll be around.  


It would also be really sad if I were stressed out about being unemployed.  But I'm not.  'Cause I'm not.  Unemployed that is.  At least not for long...because as of July 1, I will be the Minister to Children and Families at Christ UMC!  What's that you say?  That name sounds familiar?  That's because I waxed eloquent about it in this post when SuperDad was appointed there as the Associate Pastor!  That's right; John and I will have the pleasure (mostly pleasure, at least) of working at the same church again!  And what a church it is!  Over the past year, I've come to love it more and more, so much so that when I began talking with the district superintendent about taking an appointment at another church, I cried real tears.  I'm THRILLED to be working with children again, and now that I'm a parent, I think I have an even greater understanding of the role a church can play in a child's life.  When Becca first sees the church come into view over the hill, she points at it and says, "Dere's da church!"  She's so excited every single time she sees it.  And as a double pastors' kid, she sees it a lot.  :)  My prayer is that she always sees the church as a place of welcome, love and fun, like she does now.


The downside to all of this is that the reason there is an opening for me on the staff is that our dear, dear, dear Ms. Kristin (our current children's minister, who is better known in our house as "Miss Sissen") is leaving to take another appointment as the Associate Pastor at another church in town.  So the good news is that they aren't moving moving, just moving churches.  The bad news is that we won't get to see as much of Miss Sissen and Crazy Uncle Brady, both of whom Becca adores.  I haven't actually broken the news to Becca yet.  Imagine hearing that one of your good friends is moving, and your mom is taking her place...I mean, I know Becca loves me and all, but I am no Miss Sissen.  I do have visions of playdates with Miss Sissen and her little baby, due in December!  


And speaking of babies, that's the other bit of mommy-related news.  We will soon be beginning and cycle of IUI - intrauterine insemination.   I'll be on a few meds and will go in frequently for monitoring.  The day after I ovulate, they will do the procedure and voila, 2 weeks later, I pee on a stick and get a plus sign.  Or that's the goal, at least.  Because I've been on fertility meds for so long, we're not going to get many chances at this (probably only the one), so please send any kind thoughts, prayers, well-wishes, you-can-do-its directly to my uterus.  We really want this to happen.  I really want a baby.  I know there are other ways to have another child, but I really want to have one this way.  I mean, not necessarily in this manner, but I would like to carry and birth my child.  If it doesn't happen, we'll be okay and will move on eventually, but we really, really, really want me to get pregnant.  


I think that's about it.  Sorry there are no cute pictures, but I doubt you want pictures of that last bit anyway.  We do have lots of cute pictures of Becca at the beach, but alas, they are stuck in the camera at the moment.  Someday, though, you will see photographic evidence of Becca tolerating sand on her hands without "signs of distress," as we call it in therapy-talk.  See, the beach is healing for all of us.   Not sure why I can't get I prescription for that.


* Have you heard the bit about how procrastinators are actually fairly often perfectionists?  We get so caught up in worrying about whether or not our work is going to be perfect that we avoid doing it.  And that would be me in a nutshell.  Cue Austin Powers in a nutshell.  

What What??

I know, two posts in two days - insanity!  But I just looked at Becca's clinical record on myhealthatvanderbilt.com, and for the first time ever -- FIRST TIME EVER! -- EVER EVER!! -- she doesn't have a < symbol in front of her weight percentile.  She's actually, genuinely on the growth chart, right on the 3rd percentile line!  Woo-damn-hoo!  


And that is all.


Oh, okay, I'll go ahead and tell you what the GI doctor said this afternoon.  Most interestingly, when I told him that she qualified for the special ed program (more on that later), he laughed and said, "We'll see how long that lasts -- she's really smart!"  She had, after all, just showed him where her liver and esophagus are.  


But he also said that he wants a new, formal feeding evaluation and another scope to check out the inflammation in her esophagus.  It's been a year since we did either of these, and he just likes to repeat them every so often, which works for me.  The scope will involve withholding the second half of the nights' feeds, but he's going to make sure she's the first case in the morning so she (hopefully) won't revisit the hypoglycemic seizures we've seen in the past.   


And speaking of feeding and evaluations and therapy, we discussed weaning from the g-tube. Becca's current feeding therapist is all about it - she wants to change her continuous feeds to bolus feeds (a lot at once instead of a slow drip) so that Becca gets hungrier and is more likely to eat.  I'm very much opposed to this plan right now - we are simply too dependent on the tube for her basic nutrition still.  I mean, it's not like she's exactly caught up in her growth and weight or anything, and we're pushing as much milk down the tube as possible in order to gain every gram possible - and it's FINALLY working.  And she's ever solids better than ever.  (Though still nowhere near getting most of her calories from solids.)  I think this therapist doesn't fully appreciate how bad her feeding issues initially were and how far she has come in the past couple of months.  My biggest goal for feeding therapy right now is for them to work on desensitizing her gag reflex so that she throws up less and keeps more food down.  Seems like that would help her grow AND make eating more pleasant.  I mean, throwing up every day doesn't exactly make food appetizing.  I guess some parents want to start weaning as soon as the tube gets put in, but, really, I'm in no hurry to get off the tube.  We got the darn thing, surgery and all, to get food into - not to immediately start treating it like the enemy we have to root out.  For us, it needs to go side by side with learning to eat solids.  


And the doctor agrees.  He REALLY doesn't want us to work on weaning or even condensing or decreasing tube feeds AT ALL yet.  For heaven's sake, today is the first time she's legitimately ON the stupid growth chart!  Give the kid some time to chunk up before taking away her main source of nutrition.  If she can learn to like McDonald's hamburgers (yes, it's true - she'll eat an entire patty!) while still getting tube feeds, surely the g-tube isn't disrupting her hunger and feeding patterns too much.  What it is doing is giving her the nutrition she needs to grow and develop into the big, strong, SMART and FUNNY girl that she is becoming!  


So there.  No weaning pressure.  I feel validated.  We're still on the "get as many calories in her as we can" plan*.  That feels better.  Now eat up, little one.  I'll take you to "Old McDonald's" whenever you want.  


*  One caveat: we really used to feed her absolutely anything she would eat because we really needed every single last calorie that we could get in her.  I'm still VERY flexible with her menu, but we are being intentional about making sure that she's offered a balanced meal each time - at least one protein, fruit or veggie an starch.  I'm fine with that protein being ridiculously processed hot dogs, etc, but we are steering away from meals that consist solely of chocolate chips and M&M's, because that's what responsible parents do AND because, ironically, Becca is actually at a very high risk of developing diabetes and becoming obese in adolescence and adulthood, so the healthy patterns we are (slowly) working on instilling in her will be even more important than for her peers.  I'm even getting used to eating a few more real meals myself.  :)

Wednesday/Weekly/Bimothly Weigh In

Hey, do you guys remember me?  My name's Nancy; I've got a little girl who used to be a really, really, really, really little girl?  And she's super duper cute?  Yeah, that's me.  I'm still around.  Just gone radio silent.  For no good reason, really.  Or for lots of good reasons.  There's been so much exciting happening in our lives the past month or so that I keep avoiding the blog because it will take forever to actually catch you up.  (No, I'm not pregnant.)  But I've got to start somewhere, I guess, so let me give you your first stats update since March 19.  (Craziness, I know!)  


March 19: 10.05 kg (22 pounds, 3 ounces), 32.75 inches
Today: 11.20 kg (24 pounds, 12 ounces), 34 inches
11 Weeks' Change: 1.15 kg (2 pounds, 9 ounces), 1.75 inches
Net Change: 4500 grams (115 ounces = 7 pounds, 3 ounces), 5.5 inches


That looks great to me!  We go to the GI doc this afternoon, so we'll see what he thinks, too.  She's now gained the weight of an average-sized newborn.  :)

Mommy the Triathlete

"Nancy Hill, from Spring Hill, Tennessee, YOU are a triathlete!"

That's what I heard yesterday morning as I crossed the finish line, right in front of the Parthenon.  

I am a triathlete!

It was so. much. fun.  I have honestly wanted to do a triathlon for as long as I can remember.  Even as a kid, I thought it sounded awesome and like indisputable proof that I was a real athlete.  So I guess now I am! 


One of my preemie mama friends came down all the way from Owensboro, Kentucky to do it with me, and it made all the difference in the world to have a friend going through it with me.  Becca's super fantastic physical therapist was the one who got us into it, so she was there as well (cheering me on when I was starting the run after she had finished the whole thing :) ), as was her super sweet husband Kyle. 

I finished (note the operative verb) in 1 hour, 19 minutes and 3 seconds.  In about the time it takes to watch two commercial-free episodes of NCIS, I swam 250 yards, shimmied into bike shorts, 2 shirts (it was freezing - just over 50 degrees!), socks, running shoes and a bright yellow helmet, biked 8 miles, racked my bike and helmet and wrote a note to a friend, and ran (/walked) 2 miles.  If you are interested in such things, I finished 184th out of 227 "competitors."(There was nothing competitive about this race, at least not among the participants like me!  Everyone was SO encouraging!)  I "placed" (if you could call it that!) 21st out of 30 in my age group.  The swim was my strongest section (6:54, including entry, exit and scrambling to the transition area - which was the 133rd fastest swim), the bike was my worst (43:01, #194), and the run was in the middle (23:20, #174).  But really, I don't care about these numbers (though they are fun to look at).  What I care about are these numbers:

My blood pressure has always run in the 120's over the 80's, even before I was pregnant.  Okay, I thought my blood presure had always run in the 120's over the 80's, even before AND SINCE I was pregnant.  But I just looked back over my medical records (via myhealthatvanderbilt.com, which is super-convenient), and after I had Becca, my blood pressure stayed fairly high.  Unfortunately, they don't have my vital signs recorded (in that system) from when I was inpatient and pre-eclamptic, but I know that at one point at least, my blood pressure was over 160/100 because that's the point at which they told us to go to the hospital.  I'm not sure where it went from there.  (I'm horrible at remembering numbers, even important ones.)  But after Becca was born, the doctors where happy enough with my recovery that I wasn't treated with BP meds, which I thought was great.  But now that I'm looking back at the stats they had recorded for me, and all of the BP readings are high - one of them as high as 143/93!  Holy crap!  (I'm not sure why they didn't say anything about this - I will say that I didn't get the best post-partum care for several reasons, but I won't go into that right now.  Needless to say, I will no longer accept, "Well, it's probably up because you are nervous about seeing the doctor," as an excuse not to treat or discuss it!) 


Even before discovering that I was in even worse shape than I thought I was, I was motivated to get off my butt when I read this article which reports the American Heart Association recognizing pre-eclampsia as a risk factor for cardiovascular disease later in life - a risk factor of the same magnitude as having FAILED a stress test!  Ouch!  (The previous thought about pre-e was that once the mom recovered, she recovered.  This move indicates that the leading research shows that having had pre-e has lasting effects on the mom's symptoms, which makes sense to me!)  I don't know about you, but I think having failed a stress test at age 31 is pretty crappy!  I have a lot of life that I'd like to live, and I'd like that life to include running around and chasing grandbabies for a good, long time, thank you! 


But 110/72?  That's someone in good cardiac health!  Maybe not great, but good!  And a pulse rate of 71 when pushing a cart full of groceries and little girl all the way through Publix (where I always take my blood pressure) is pretty good, too - average, even!  Just think of it...me, average!  :)  Of course, I'm still carrying around extra weight, but even with the weight, my numbers look good!  (I didn't seem to LOSE much weight in the training process, but I've definitely got more muscle and maybe slightly less fat.)


And you know what other numbers I care about?  How about the 1 baby that is born prematurely out of every 7 babies born in Tennessee?  Or the 236 preemies born in Tennessee each week?  And what about the nearly $200 that my Triathlon for Trimesters training raised to fight against those numbers?  Yeah, those are numbers that I care about.  (And my gracious sponsors will soon be hearing more about those numbers in an e-mail.  Each dime you sponsored earned $7.50 for the March for Babies!) 


I'm hoping to do another triathlon soon.  I'm looking for sprint triathlons held on Saturday.  (Most are held on Sunday, when I'm kind of busy...and about to be really busy...but more on that another day!)  Now that I'm hooked, I might start caring about that first set of numbers as I work to get my times down...but in the meantime, I'll be proud of what I've done to the rest of the numbers.  Thanks for helping me get there.

p.s.  Becca can now say "triathlon" (="tiafyon") and knows that Mommy went in the "simming pool," "ride bike," and "did running."  Such a great cheerleader - I can't wait to do one with her watching!

Thank You, Itty Bitty Becca's Team!

We're still counting our pennies, but we're over $5,000!  Here's our official team thank you card from shutterfly.com.  :)

Photo Card

View the entire collection of cards.

School Picture Day!

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Packages

One of the benefits of being a g-tube dependent kiddo:  you get lots of packages in the mail every month!  When I brought them in from the porch, she immediately said, "Wass in dere?" and then promptly went about finding out.