Itty Bitty Hill

First & Second Visits

2012-01-17T21:14:00.000-06:00

Okay, I promise this blog isn't going to be only about the pregnancy, but, frankly, I feel like crap and have no energy so for the time being, I'm just hitting the highlights that may prove relevant to the overall story...and maybe in a few weeks I'll be back to raving about Becca and her ridiculous adventures. Right now most of my conversations with her go like this:

Becca: Mommy, you want to pway wif me?
Me: Baby, I'd love to play with you, but I don't feel good right now. I need to lay down. Do you want to see if Daddy can play with you?
Becca: Aw, Mommy. Are you sick?
Me: Kind of.
Becca: I'm sorry, Mommy. I give you a kiss. Dat will feel you better. (Kisses me super-sweetly) Do you feel better now?
Me: Of course I feel a little better now. I love your kisses! But I still need to lay down.
Becca: Mommy, you want to pway wif me now?

She is soooo sweet and compassionate...and persistant.

So there's your Becca fix. On to the doctor...

I saw Dr. Sizemore last Wednesday, when I was 6 weeks, 3 days (or so) pregnant. His nurse, Liz, is awesome - she knows our whole story and has really been pulling for us. She asked me if I wanted him to come in and talk to us first or just go straight to the ultrasound. Of course I wanted the ultrasound immediately - I HAD to see that heartbeat! She said, "Oh good; I didn't think I was going to be able to wait!" So sweet. So - we did the ultrasound, saw the teeny tiny heart beating, everything in the right place, etc. Looks great. And there's only one, which is good for my risks (and probably my sanity as well). They didn't give us an official due date, as he wants to wait until 8 weeks and actually measure the baby and set it from there, but he saw everything he expected to see at 6 and a half weeks.

We talked over my treatment plan and changed a few things. By this point, I was feeling really nauseas (WHY is my spellcheck not working?!), so we decided to nix the Metformin, as the, um, intestinal distress it caused combined with the aching tummy was too much to handle. I think that's the only medicine change we made. We did decide to co-manage with the Maternal-Fetal group at Vandy, and he's setting up my first appointment with them. I haven't heard back, so I don't know when it will be, but he thought they'd like to see me fairly soon. They gave me the supplies to do a 24-hour urine collection (hooray!) so that we have baseline numbers for protein in my urine. I've been putting it off...but if you at church in the next few days, be careful when opening refrigerators. :) They took 10 vials of blood in order to get baseline numbers for a million other things, and that was in addition to the blood panel that my PCP had just run the week before. Good thing my blood supply is increasing so much! We are, of course, hoping to go full-term and pop out a big ole baby, but the good doc and I (and poooosssibly my overly-optimistic husband) agreed that a good, realistic goal will be to have a take-home baby, one born around 34-35 weeks who gets to go home from the hospital when I do. It may be earlier; it may be later, but it's probably wisest for us to shoot for this age and be somewhat prepared (at work, etc) to see this babe a few weeks early, at least. Dr. Sizemore is, as I've said before, AWESOME and wants to see me back in 2 weeks for another ultrasound and the official setting of the due date (da dada dA!)...but he said he'd be happy to give me another ultrasound this week if I needed to see that everything was okay again. You'd think he knows me or something.

But...we actually ended up with another ultrasound just 2 days later. I have been spotting some for the past couple of weeks, but I know that can be normal, and I had some similar spotting with Becca. But on Friday morning, I woke up with more significant bleeding, so we went in to take another peek. Everything still looked fine, and in the absence of any anomaly in the ultrasound and/or significant cramping, the doctor (this time Dr. Sizemore's partner, Dr. Didier, whom we also really liked) chalked it up to the blood-thinning effects of the baby aspirin and the Lovenox. He figures that any bleeding I do have is going to appear more significant because, well, there's going to be more of it because the meds are doing their job...which hopefully means that the placenta will form without clots. I talked to him about my nausea (which had gotten so bad tht I stayed home from work on Thursday), and he gave me a prescription for Zofran, which has heped some. So, all is well.

And all is well...but I'm having trouble remembering that. I'm feeling pretty awful now (with a pretty bad cold on top of tummy troubles), and I think the nausea is reminding me so much of Becca's pregnancy and everything that went wrong with it. My anxiety has been really high lately, so I'm not planning on dropping my Zoloft dose anytime soon. Sorry, baby...Mommy's got to take care of herself, too. But my new mantra is, "Nothing's wrong until something is wrong...and nothing is wrong [yet]." I don't have much patience for people who tell me that everything is going to be fine because, well, they have no idea a) what we've been through, even you know the story; and b) that everything IS going to be fine. They just really want it to be fine, and that's sweet and all, but hold the bullshit. You don't know that, so don't try to convince me of it. Still...nothing is wrong until something is wrong. And there are a million things that could go wrong. But nothing is wrong now.

Initial Plans

2012-01-14T20:26:00.000-06:00

In the name of not re-inventing the wheel or some other time-sucking and energy-draining analogy, below I'm posting the e-mail that went out to our parents after my initial conversation with my OB. It outlines the basics of my plan of care, and I'll update/fill in more another day. But now I've got to put the first plus sign to bed. :)

Sent 12/28/11 (or so):

So - I talked to Dr. Sizemore, who has been my OB/GYN for the past year and a half or so. He also delivered Becca when he was a resident at Vanderbilt. So you could say that he knows my case inside and out. Literally. Because of my history (namely, severe pre-eclampsia and HELLP syndrome before 28 weeks), I've got significant risks. (Duh.) The most significant change we've made in my care is to, oh not be in the job I was in when I was pregnant with Becca. No overnight on-calls, no rushing to the bedside of dying pregnant women, no skipping meals because I'm the only chaplain in the hospital. The most stressful thing I have to deal with is my 5th and 6th graders...and working with the likes of Paul Bonner and Mark Price. While the effect of stress on a pregnancy can't be measured, I think it's obvious that my work situation definitely did not play in our favor with Becca's pregnancy. So I think that might go a long way towards a healthier pregnancy.

We're also handling my medicines very carefully. Here's the run-down on those, starting with changes to my regular meds:
- Zoloft - which I've been on for over a decade now for anxiety/depression - we're dropping my dose, leaving it for a few weeks, and then POSSIBLY dropping it again to see how low I can go and still feel okay. Since my last pregnancy (when they were handing Zoloft out like candy), they have determined that there is some risk to taking Zoloft in the 1st and 3rd trimesters, so they want me as low as possible - but there's also a great deal of risk with a depressed and/or anxious mother, so we're looking for the balance.
- Prilosec - thankfully, I get to keep it! That is very exciting because, even though I am only, oh a couple of hours pregnant, the pregnancy heartburn has already begun. Yuck.
- Zytec - I get to keep it! Breathing is a good thing.
- Symbicort and albuterol - Speaking of breathing, my inhalers are good to go. Very few inhalers are considered risky, I think because they don't act systemically.
- Trazadone - my beloved sleep medicine - it's gotta go. It's also an antidepressant and in the same category as the Zoloft, so it's out. So far, I've tried to replace it with Ambien, which makes me totally panicked and worthless the next day, and Tylenol PM, which was like taking a sugar pill. Or a caffeine pill. Next up is Unisom...so we'll see how that goes tonight. I really, really love to sleep, and my body really, really needs it right now, but I really, really can't sleep without help...so cross your fingers that the Unisom or something else does the trick.
- Baby aspirin (81mg) - I've been taking this for over a year so that I would be on it when/if I ever did get pregnant. Some studies have shown that this can help prevent pre-eclampsia in subsequent pregnancies. The science isn't clear on it, but there's plenty of anecdotal evidence that it works, and it's certainly not going to hurt.
- Vitamins - I've been taking over-the-counter prenatal vitamins since before I was pregnant with Becca (as should every woman of childbearing age), but now I've switched to Rx ones, specifically one called PreQ10. It claims that it can also be effective in preventing pre-e, but, again, the science is kind of soft on it. But it's certainly not going to hurt, either, so as long as I can get those, I'll stay on them. (Unfortunately -- and very stupidly -- our insurance doesn't cover prenatal vitamins, so staying on these depends chiefly on my ability to get samples of them - and they don't sample these a lot.)

We're also adding some new ones:
- Metformin - I had actually just started taking 500 mg of this, prescribed by my PCP for a number of reasons. This is the drug that helped me get pregnant with Becca (but I JUST started it, so it's not to blame for this adorable blastocyst in my belly). Women with PCOS have a higher risk of miscarriage (even apart from my crazy history), and there is some evidence that Metformin can help sustain a pregnancy through the first trimester. So what the heck. I'll take it.
- Prometrium - which is just progesterone - the brilliant Lauren McCormick, APN, suggested that I take this through the first trimester, also to help sustain a pregnancy by giving it bonus progesterone. During the 1st trimester, it's up to my body to produce progesterone, so if I'm low, these little pills should help compensate. After the 1st trimester, it's up to the placenta to produce progesterone, but it's not making it then, there's not much we can do (and we have SUCH good luck with placentas...). Anyway, Lauren started me on it, and Dr. Sizemore thought it was a very wise call. (Good job, Lauren!)
- Lovenox shots - yep, I get to give myself a shot everyday now. Becca and I can do them together, I guess. Last time, I tested borderline positive for a clotting disorder in pregnancy, so I eventually started the shots then. We're going to be proactive and go ahead and start them now. Anything we can do to help the placenta (again, our best friend/worst enemy in Becca's pregnancy) is a good thing, and while we're not sure it will help, again, it won't hurt, so I'll certainly do it!

Dr. Sizemore will see me soon after I get back in town, right around 6 weeks, and they'll do an ultrasound (hopefully visualize a heartbeat) and run a BUNCH of baseline tests. There are lots of levels that we will have to keep checking throughout the pregnancy (liver enzymes, protein in my pree, blood counts, platelets, etc), so they will want some baseline readings to compare then to. I've still got my blood pressure meter, so I'll be checking that regularly at home. We'll formally decide which specialists I want to see at my appointment - I know Dr. Sizemore likes the guy just above his office at Williamson Med, but they only deliver at Centennial for Level III NICU care, and, while I've got friends who have had positive experiences there, it's not Vandy. And I know enough about the NICU's around here to know that the absolute best care a preemie can get in Nashville is from being IN-BORN at Vandy - not getting transferred there later. So I think we'll co-manage with Dr. Sizemore and the Maternal-Fetal group at Vandy (the only high-risk folks who can deliver there). Like John said yesterday, I'm just not going to be comfortable going anywhere else. And my being comfortable is half the battle here.

Emotionally, I am doing okay. Of course, I am OVER THE MOON excited, but I'm also anxious. It would be impossible not to be, given our experiences. I had a moment today when I was at the pharmacy to pick up my Lovenox shots when they told me that I'd have to come back tomorrow because they had to order them. I started to freak out about waiting a day to start them and was trying to think of a way to demand that they get them to me (crazy preemie mama coming out)...but then I realized that one day is probably not going to make a difference, and besides, the doctor wasn't 100% sure we needed to do them anyway. But of course I'm going to freak out a little bit. Not only am I facing trigger after trigger for the former trauma, I have very real risks that I have to take seriously. So I'm trying to give myself some grace and let myself freak out when I need to...but then come back around to the really good plan we have in place. It sounds cliche, but I am finding it easy to really and truly experience every day that I am pregnant as a blessing. It was damn hard to get here and there's not telling how long it will last, but at the moment, today, I am pregnant, and I am loving it - the pregnancy and the little bitty poppy seed itself.

Physically, I am (predictably) exhausted. And really hot. And somewhat heartburn-y. And really hungry. And when I get too hungry, I start to feel faint and just a touch nauseous, so I'm afraid that the nausea may be on its way. Cross your fingers on that one, too. (I was very sick the entire pregnancy with Becca. I could give you a tour of most of Louisville, just showing you all the restaurants and roads I throw up in and on. It was a rough 7 months.) There's a chance that the extended nausea I had with Becca was linked to the placental issues, so maybe if we avoid the big stuff, we will also avoid the puking. Of course, I will take puking for 9 months if that's what it takes, but it would be nice not to feel awful the entire time.

So that's what I know. I'll keep you posted. (Yes, Mom, I will. See? I am.) I'm hoping there won't be much to talk about. And like I said, I'll probably switch to the blog format soon to keep our adoring public happy. :) But for now (and then), we'd appreciate all the kind and healthy thoughts and prayers you can conjure up!

Well....

2012-01-11T18:04:00.003-06:00

I have dreamed of writing this post a million times. Sometimes I even had it down, word for word, in my brain. But now that the time to write it has finally come, I'm so overwhelmed with emotions (joy, excitement, and terror, to name a few) that I can't even be creative about it. So I'll just go ahead and tell you what we found out on Christmas day and actually started believing when we saw a heartbeat this morning:

I'm pregnant.

Yep, there's a baby in there. An embryo, actually. But a healthy-looking blob of an embryo with its heart all a-flutter and everything. I'm 6.5 weeks along, putting the technical due date somewhere around September 2. I'll give you more details later, along with my (extensive) plan of care, but for now, let's just revel in the news...there's another Itty Bitty Hill in the mix! Though there will always only be one Itty Bitty...so maybe this one is Eensy Weensy Hill. Let's try that on for a few days. :) Please join us in praying for a very loooong and healthy pregnancy.

How I Wonder

2011-12-08T20:49:00.000-06:00

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

2011-12-01T08:27:00.000-06:00

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

2011-11-28T08:22:00.000-06:00

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...

2011-11-24T20:12:00.001-06:00

...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

2011-11-22T23:25:00.000-06:00

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!

2011-11-22T22:21:00.002-06:00

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...

2011-09-06T20:51:00.000-05:00

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

2011-09-03T14:48:00.001-05:00

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!

2011-08-29T09:23:00.001-05:00

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

2011-08-23T10:59:00.004-05:00

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

2011-08-22T09:04:00.001-05:00

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...?

2011-08-21T09:17:00.000-05:00

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

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Stuff I Hear a Lot

2011-08-19T20:34:00.001-05:00

* 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!

2011-08-02T23:44:00.002-05:00

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

Tiny Dancer

2011-07-30T09:38:00.004-05:00

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

2011-07-28T21:36:00.000-05:00

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

2011-07-28T20:30:00.000-05:00

My Crazy-Awesome Kid

2011-07-23T22:19:00.003-05:00

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

2011-06-28T10:01:00.000-05:00

And I encouraged it.

Photo and video editing at www.OneTrueMedia.com

Becca at 3

2011-06-27T18:49:00.000-05:00

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

2011-06-12T14:44:00.000-05:00

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

2011-06-06T23:46:00.001-05:00

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??

2011-06-02T08:33:00.024-05:00

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

2011-06-01T12:57:00.000-05:00

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

2011-05-16T17:21:00.003-05:00

"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!

2011-05-08T21:56:00.003-05:00

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!

2011-05-03T16:32:00.001-05:00

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Packages

2011-05-02T09:22:00.002-05:00

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.

Easter Bunny

2011-04-29T12:33:00.002-05:00

The Easter Bunny didn't really get her act together to stop by our house on Saturday, the day that she normally visits pastors' kids, but she did manage to stop by during Becca's nap on Sunday. Becca LOVES the Little People dollhouse she left for her!

And Becca really got into finding the eggs that she and Kate dyed on Saturday!

Afterwards, we spent a lot of time saying, "Tank you, Eassa Bunny!" since Becca insists on thanking people (and bunnies, I guess) over and over and over and over and over. She's a grateful kid. :)

Easter 2011

2011-04-28T21:15:00.001-05:00

Pretty girl in her pretty dress...maybe not a deeply theological treatise on Easter, but, really, nothing drives home the point of Jesus' victory of life over death to me more than a beautiful, growing girl who was supposed to die. Instead, she dresses up purty for Easter and exclaims, "Jesus is ayive! And painting!" while ringing her alleluia bells. That's sermon enough for me. Now exactly WHAT Jesus is painting, I have no idea. Couldn't be much prettier than this:

When I started putting this bow on her, she said, "Too big!"
I told her that no bow is too big for Easter. :)

Self-portrait with Mommy

Buster is jealous that he didn't get a pretty Easter dress.

HAPPY EASTER!

And remember my favorite liturgical public service announcement:

Easter is a season, not a day - so I'm not late! :)

Pastoral Definition of Infertility

2011-04-14T23:01:00.000-05:00

While I was perusing my friend Jessica's new, fabulous website, www.ministrymatters.com, I can across the entry on infertility in the Dictionary of Pastoral Care and Counseling. If you are curious as to what this experience is like or if you want to process your own experience of infertility a little bit, take a minute to read it here. It kind of hits the nail and all for me, except that I don't really hear the "Be fruitful and multiply" bit being an actual directive from God to us to procreate (but I can certainly see how some people would). Anyhow, just thought I'd share.

Update on Itty Bitty Becca's Team

2011-04-10T21:17:00.001-05:00

It's t-minus 7 days until the 2011 March for Babies! (And, in case you are wondering, that's exactly why the Becca blog posts have been so few and far between as of late. But have no fear - I have been snapping pictures and videos to upload and share with you when my schedule is a little bit back to normal.)

So how is Itty Bitty Becca's Team doing? Quite well! In 2009 and 2010, we averaged about $1500. This year, we are already up to...wait for it...$3710! WOW! That's 247% of our average! We've made a big jump this year by branching out with our fundraising efforts and by having more of our team members reach out to their friends and family to raise funds, too - big thanks go to Ashley, Christy and Emily, who have raised almost $600 among them! Our team is consistently tracking in second place among the Music City family teams, but there are 3 teams right on our heels. I think it's going to come down to the wire! The first team place is over $10,000, so I don't think we're going to catch them, but we could hold our second-place position with a solid final week push! (But I'm not competitive or anything...)

I've revised our team goal up to $4,000, which solidly ranks us among the top family teams. We are $290 away from that goal, so I think we can make it - but of course, we need the help of all of our favorite procrastinators...so if you've been meaning to give but just have gotten around to taking the time to do so, take a minute now and donate at www.marchforbabies.org/ittybittybecca. That's Becca's personal fundraising page - I've set it up so that she can be a Top Walker herself (that's the VIP status for walkers who raise over $1,000) - after all, she is the most important walker on our team! :)

You may be wondering how the triathlon training is going...and I've been meaning to give it a dedicated post, but since I haven't gotten around to it yet, I'll give you the skinny here. So, first off, let me say that it's going well-ish, and I'm confident that I'll be able to complete the race, as long as there isn't a time limit they haven't told us about. :) But let me introduce you to my new best friend:

Yep, after all of the concerns about Becca's lungs, I'm the first one to be diagnosed with asthma! Wohoo! Of course I'd rather it be me than her, but I'd prefer that none of us have to deal with it. I had some really super minor asthma issues as a kid, and according to the pulmonologist (yep, the first time Becca met a pulmonologist was at my appointment - ironic!), it's not unusual for it to come back in adulthood. Turns out things like training for a triathlon bring such issues to light. I've got the "rescue inhaler" above that I take when I need it and/or before working out, and we're trying out a maintenance inhaler that I take nightly. They both seem to be helping but they haven't exactly made the problem disappear like I had hoped. That's probably a little too much to ask for, but we'll see what the doc says at my follow up in a few weeks.

So, needless to say, that set my training back a little bit. Add to that John's being sick over a couple of weekends and Becca's impromptu hospital stay and subsequent recovery, on top of the busiest season at work, and I haven't exactly hit my training goals, especially not in terms of the Tri's for Tri's fundraising. Right now my fine sponsors owe a whopping $3.35 for every dime sponsored, which is far from my original goal of $15 per dime and still far from my revised (and much more realistic) goal of $10 per dime, so, for all those sponsors willing to bear with me, I'm extending the fundraising period until up to the triathlon. That gives me about an extra month post-March for Babies to hit the training hard and make up for some lost time. In retrospect, that's what I should have arranged from the beginning, but I'm not sure I really conceived of how busy the weeks leading up to March for Babies would be. And since we can collect March for Babies money through the month of May, the dimes will still count toward our team total. Sponsors, if you're not on board with the extension, feel free to cash out now at www.marchforbabies.org/ittybittybecca. Otherwise, know that I'll be working hard to earn your dimes - staring next week. :)

Our team t-shirts should be shipping to me tomorrow, so I'll probably be able to start handing them out at church on Wednesday. If you haven't yet paid for your shirt(s), you can send me a check or drop me an e-mail or facebook message, and I'll give you instructions on how to pay through PayPal.

And just in case you need a reminder of why we Itty Bitty Hills are working hard for the March of Dimes, see below. The money we raise gives other mommies and daddies the chance to cuddle with their little lambs, too. Thanks for all your help!

On Therapy

2011-04-04T17:05:00.000-05:00

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

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

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

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

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

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

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

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

Last Call for Shirts!

2011-04-01T12:26:00.000-05:00

I just wanted to give you fine folks one more chance to reserve your Astronaut Becca March for Babies 2011 shirt! They are $15 each, with sizes from youth XS through adult XXL. I may be able to get toddler sizes as well. They are super-cute, and I'm happy to mail them to you for just the price of the shipping, which is usually about $2 a shirt. (I can give you a more precise total later.) I'm not ordering extras, so speak now or forever hold your peace!

Test Results & Bug Spray

2011-03-31T22:54:00.001-05:00

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

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

Usually bug bites are just annoying, but sometimes they can make your kid stupid-sick.
Don't bother with the non-chemical means of repelling bugs from your kids. Most of them ain't gonna work. If you don't want to put chemicals on your kids, that's okay...but they're gonna get bit. I will admit that they say that repellents made from some essential oils do offer some protection but they are "much less effective repellents" and last less than 2 hours.
DEET is no longer considered bad. In fact, it's your best defense. Just don't use a spray that is more than 30% DEET on your kids.
DEET levels work kind of like SPF - the more DEET in the spray, the longer the protection lasts. To quote: "For example, products with amounts around 10% may repel pests for about 2 hours, while products with amounts of about 24% last an average of 5 hours." But once you go over 30%, there's no additional benefit, so no need to go overboard on the chemicals.
Even though I just put DEET and SPF in the same bullet point (did it again now!), don't use products that contain both - the DEET makes the SPF less effective and you may end up overdosing on DEET because you're likely to reapply it more often.
If you are particularly concerned about ticks, you can treat your kids' clothes with permethrin, which kills ticks on contact. Do not apply it to your kids' (or your) skin, just on their clothes, where it will last for several washings. I'm considering doing this to a few pairs of B's pants and her jackets. We don't like ticks 'round here, that's for damn sure.
Something they recommend that I won't do: "Avoid dressing your child in clothing with bright colors or flowery prints because they seem to attract insects." Um, too bad.
Don't use anything on babes younger than 2 months. And don't spray kids in the face. Spray your hands and then rub it in their face. But not in their eyes. 'Cause that's just mean.
And I love this one: "Remember, children need and love to be outdoors." So now that we've made you paranoid, go play outside.

Speaking of being paranoid...some of you have asked how we're doing after the whole hospital adventure. I'll say that we are doing fine, for the most part, but I definitely think that Becca and I are a little jumpy still. (John Hill continues to be impervious to worry, though I think he's really just delegated it to me.) When we were listening to the president's speech on Libya on Monday and heard him say "hospital," Becca picked up on it and told me that we were going to the hospital. (Interestingly, she wasn't upset about it at all. Hospitals are just places you go every now and then. And sometimes you get free blankets there.) But she freaks out when I say that we need to do something quickly and says, "No tick! No tick!" because quick=tick to her ears. And I nearly had a panic attack after scheduling Becca's first date with a teenage babysitter as I immediately pictured everything that could go wrong. (Logically, I can tell you that the far likeliest scenario is that everything will be absolutely fine and that the next likeliest scenario is that something will happen but the babysitter, a very responsible high school senior, will handle it beautifully.) But I think the jumpiness is natural, so I'm trying to give myself grace about it. And I'm saying "fast" instead of "quick" around Becca. :)

Our First Ambulance Ride

2011-03-26T23:48:00.000-05:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Becca Ou-shide!

2011-03-21T10:16:00.000-05:00

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

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"Wednesday" Weigh-In

2011-03-19T13:54:00.008-05:00

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

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

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

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

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

Biker Chick!

2011-03-18T22:19:00.004-05:00

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

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

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The Big Reveal

2011-03-14T17:26:00.000-05:00

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

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

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

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

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

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

Of course, if you'd prefer to skip the t-shirt and make a donation directly to our team, visit www.marchforbabies.org/BeccaHill.

Thanks, and let me know if you have questions!

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

Wednesday Weigh-In

2011-03-09T21:18:00.001-06:00

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

Last week: 9.85 kg (21 pounds, 12 ounces), 34 inches

This week: 10.00 kg (22 pounds, 1 ounce), 32 inches

Week's change: +150 grams (5 ounces), -2 inches

Net change: +2300 grams (74 ounces = 4 pounds, 10 ounces), +3 inches

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

Off the Charts...

2011-03-07T22:29:00.001-06:00

...is where we usually fall. But check this out:

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

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

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

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

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

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

Wednesday Weigh-In & GI Update

2011-03-02T14:38:00.001-06:00

Last week: 9.9 kg (21 pounds, 13 ounces), 33 inches

This week: 9.85 kg (21 pounds, 12 ounces), 34 inches

Week's change: -50 grams (1 ounce), + 1 inch

Net change: +2150 grams (69 ounces = 4 pounds, 5 ounces), +5 inches

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

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

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

Thoughts on Tri's

2011-02-27T22:37:00.001-06:00

My pregnancy with Becca ended right at 28 weeks, which, depending on how you measure, is the end of the second trimester. That means, of course, that she and I only got TWO TRImesters. Which I guess means that we got 2 semesters, really. If there is no third, a pregnancy can't really be divided into trimesters, right?

I still grieve the loss of that third trimester - for me, for her, for us. I REALLY wanted to get big and fat and waddly and complain about my hips hurting, not being able to get comfortable, not having any room to eat because the baby was taking up so much room in there. I REALLY wanted to have baby showers (which I did end up having, thankfully, but in a different way). I wanted to nest. I wanted to worry about where my water was going to break - what if I was in a patient's room at the hospital? Or in the middle of an IPR group with my awkward male supervisor?

Instead -- and I'm not saying this to be dramatic, it's just God's honest truth -- I planned Becca's funeral. I can still tell you where it was going to be, who was going to do what, where I wanted her remains placed. When I encounter an emotional trigger (like a child's funeral), I still find myself thinking about it and re-planning it. (Now she loves to sing "Jesus Loves Me," so we'll include that, for example.) Hello, post-traumatic stress disorder. It's good to see you're still sticking around. There's no reason to think at this point that I'll outlive Becca, but part of me is still all too acutely aware of that possibility. Because of that damn missing trimester.

If she understood it, I'm sure Becca would be grieving that trimester, too. It's the reason she's covered in IV scars. It's the reason she has to be fed through a hole in her stomach (what, all kids don't get "tummy milk"?). It's the reason I have to give her a shot every single night for the next 10 years. I's the reason she ran screaming from me when she saw me coming towards her with medicine. It's the reason she can't keep up with her peers in the classroom or on the playground. It's the reason why she can't jump, walk up or down stairs, get her hands messy or (we think at the moment) hear well. It's the reason that she'll be in multiple therapy disciplines for several more years. It's the reason that she's thrown up 11 times in the past 2 weeks. All because of 3 months we missed out on in 2008.

Mind you, I've very aware of how far she has come, and I'm grateful for every small step she makes, but I'm also becoming aware that she's likely not going to be one of the luckiest preemies who have fully recovered from their prematurity before they even realized they were different from other kids. I'm confident that with her personality she will deal with these differences with the stubbornness and humor that already fill my days with bemused exasperation. She'll be okay, even if she's not "normal".

But, darn it, I want that trimester back! I'd give my left arm to have that time with her developing properly inside me. (Of course, I am very aware that not everything goes perfectly with full-term babies, either, but, wow, getting our full 40 weeks would have given her a much better start!) But I can't. There is no rewind button in life, and even if there were, there's nothing I could do to change things. S^&t happens, and Becca and I got a crappy placenta and umbilical cord and a severe reaction in my body. What's done is done.

But what I can do -- what we can do together -- is to help other women (and maybe even myself someday) have full-term pregnancies. And you just might poop in your pants when you hear what I'm going to do about it.

In honor of the TRImester that Becca and I never had, I have signed up to participate in a TRIathlon.

Whoa.

Those of you who have known me a loooong time may remember that I was a vaguely athletic person at one point. Those of you who have gotten to know me in recent years are probably thinking, "Um. Okay. I'll believe it when I see it." And for those of you who don't know me personally, let me just tell you that it's going to take a heckuva lot of work over the next 10 weeks to haul all 196 pounds of me across that finish line.

It's the Ramblin' Rose women's-only triathlon, which will be held on May 15th in Nashville. It's a great length for a beginner - a 250 yard swim (10 pool lengths in a regular lap pool), a 9 mile bike ride and a 2 mile run. And I've already paid my $86.50 to register, so my cheap butt is going. to. do. this.

But, I need your help! Let me introduce you to a new (borrowed from a friend) logo:

In order to a) get me motivated to get into shape; and b) use this experience to actually help other families get all 3 of their trimesters, I'm asking you guys to sponsor my training...in dimes, of course!

I'm basing sponsorship opportunities on training units. One training unit = 1 mile run, 2 miles biked, or 150 yards swum. You can choose your sponsorship level: for example, if you sponsor 2 dimes per training unit and I run 2 miles one day, you'd donate $0.40 for that day's workout. I'm capping my training units (for sponsorship purposes) at 150, so the maximum donation a 1 dime sponsorship would necessitate is $15. All the money raised will go towards our March for Babies team. With only 7 weeks left until the March for Babies, I'll be pushing it to get to the 150 level, given how out of shape I am now. So your sponsorship will definitely be motivating to me!

If you are interested in sponsoring me, just leave a comment on this post, noting how many dimes per training unit you'd like to contribute. As always, your gift to the March of Dimes is tax deductible, and I'll provide you with a receipt after the March for Babies (which is on April 17th). Let's see how those dimes -- and my efforts -- can add up!

And don't forget - you can still sign up to be part of Itty Bitty Becca's Team and/or donate directly on our team page.

Thanks for being such a wonderful support system - for me and for Itty Bitty!

Wednesday Weigh-In

2011-02-23T21:43:00.000-06:00

Back to the original title! Hooray for me! Here's the scoop:

Last week: 9.8 kg (21 pounds, 10 ounces), 33 inches

This week: 9.9 kg (21 pounds, 13 ounces), 33 inches

Week's change: +100 grams (3 ounces), + 0 inches

Net change: +2200 grams (70 ounces = 4 pounds, 6 ounces), +4 inches

Still haven't heard back from GI.

Feeding Update

2011-02-22T22:06:00.000-06:00

I could just tell you that Becca's eating is improving...but it's more fun to show you with this video. She still needs lots of feeding therapy and will not be leaving the feeding pump behind any time soon (or for a few years), but she is at least experimenting with some new textures these days...like that of...JELLO!

Make an on-line slideshow at www.OneTrueMedia.com

Weigh In and GI Update

2011-02-20T22:36:00.000-06:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tinkle, Tinkle

2011-02-15T10:17:00.000-06:00

Usually when I'm around Becca and hear a "tinkle" sound, it's her asking me to sing "Twinkle, Twinkle Little Star," which was the first song she ever sang along to and probably still her favorite song. But on Monday, right before she went down for her nap in her big girl bed, I heard a different "tinkle" from Becca. Yeah, that's right...wait for it...

Becca went pee-pee in the potty!

I was changing her diaper and asked her if she wanted to sit on the potty. She said no, but after a few seconds, she said, "Pee-pee potty!" After confirming that she did, indeed want to sit on the potty, I whisked her naked butt into the bathroom and sat her down on her squishy Elmo potty seat. We then started to read our special potty-only Elmo books (a bribe to get her to actually spend a couple of minutes on the toilet), and halfway through Elmo's First Book of Airplanes and Rockets, I heard a little "tinkle tinkle tinkle"! It wasn't very much; it might have even been only one "tinkle," but I was all over it! I think it/I actually scared her a little bit. She looked really surprised but then when I told her she actually got to USE TOILET PAPER (her favorite toy ever) to wipe, she got excited. The rest of the routine is old hat to her because she does it every time she sits on the toilet: hop down (with Mommy's help - the toilet is very large when you are very wee), flush, watch the water go around and around (and talk about it), climb on the Elmo stool and let mom pick you up to "wass hans." Except this time we had a massive potty dance in the middle of it, waving our arms, twirling in circles, all with her little naked booty poking out from under her Elmo shirt. (You could say we're still a little obsessed with the furry red guy.)

I was so proud of her! I don't expect her to be straight into panties or anything, but, y'all this is huge! It's huge for any kid, but it's especially huge for one with gross motor delays and hyposensitivity issues. Because she's under-responsive to sensory stimulation, it's hard for her to recognize the feeling that she's got to "go." I mean, it's hard for her to actually feel that feeling. But I think she did this time! I know part of her wanting to sit on the potty was simply to put off her nap (she always wants to sit on the potty before bedtime!), but the diaper I had just taken off of her was really dry, and when she got to the potty, she started "tooting" (and told me every time she did) and, of course, peed, so I think she might actually be connecting the toilet with the sensation and the appropriate response to it. She's associated the toilet with pee and pooh for quite sometime now - at least as the place where Mommy and Daddy pee and pooh. But for her to realize that she can make things happen there, too, is awesome!

I'm not tossing out the diapers tonight, but I might just wait a little while before I decide just how jumbo a pack I should buy this week!

What Just Happened?

2011-02-14T15:46:00.001-06:00

I remember now why I started blogging so much more when I stopped working - because I didn't have time to do it before. And now that I'm back in the workforce, it's been difficult to sit down at the computer long enough to focus on a post. But, wow, I've got a lot to write about. Because here's what just happened: my Itty Bitty Baby Becca turned into a very BIG GIRL. I'll try to knock out a few posts right now so that over the course of the week you can see what I mean.

So, first of all, let me update you on the big girl bed situation.

She's in it right now, napping. Hopefully for a couple more hours. She slept in it Friday, Saturday and Sunday nights with no problems. Absolutely no problems. She loves her big girl bed. And she can't quite manage to climb in or out of it without help, which is (for my purposes) kind of awesome. She also napped in it on Saturday and Sunday, and both naps were shorter than normal (but still about 1.5 hours), so I'm hoping that it's not being in the bed that is affecting the length of her naps. She tends to nap longer when John isn't home (guess missing out on time with Daddy is just not worth the sleep to her), and he was home all weekend, so I'm hoping that's the issue. I think we'll get an answer on that after today's nap. I took Sasha, Buster AND Becca to the dog park and to Target this morning, so she's certainly tired, and SuperDad's at work, so if she's going to nap for her more typical 2.5-3 hours, today's the day. Except that there is so much sunshine spilling into her room that that could be a disturbance...but I'm not about to complain about SUNSHINE after all of this snow!

Here's the last picture I took of Becca in her crib. (One night this weekend I found her in her new bed sleeping in this exact same position. Love it.)

And here's how excited she was when I brought her big girl bed home, followed by a clip of her testing it out once we finally got it together. (This video is also awesome because you can tell just how well she listens to me.):

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And here's her first night in the big girl bed, taken right at bedtime so she's awake but squeezing her eyes shut...while saying, "Cheese!" This kid's a hoot!

I'd say this is one growing up transition that's been easier than I expected!

Big Girl Bed!

2011-02-11T21:35:00.000-06:00

(As opposed to the "Big Girl Bed?" post from last week.)

We did it! I bought Becca's big girl bed today (after making 4 trips to 3 stores - ugh)! She's sleeping in it now. I just went and check on her - she's all snuggled up, just like she normally is in her crib. It's a toddler bed (we figured she'd fit in that for quite a while!), but John managed to finagle a bed rail for a twin bed so that the whole side is fenced in. With all of her blankets and pillows, it looks like a little Becca nest. She was quiet by the time I walked out of the room and hasn't made a peep since. I expect that she may get confused when she wakes up in the middle of the night, but we'll see. It seems the hardest part of it all just may be the assembly process. (That was...difficult. I guess $58 beds aren't known for their ease of use, especially when a VERY excited 2-year-old is trying to help.)

But then again, the hardest part was probably the bittersweet/ambivalent mama staring at the crib and realizing that she likely won't ever be putting her baby girl to sleep in there again. For some reason, I didn't see that coming. BUT. She is a big girl, and that has been the goal all along. I'm supposed to work myself out of a job, after all.

But if I ask her, Becca still tells me that she's Mama's Baby Girl. And she is.

I'll update tomorrow and add some pictures!

Dance Lessons

2011-02-08T08:21:00.000-06:00

We had a lovely visit with John's family this weekend (despite some illness). Aunt Jen Jen (as opposed to Aunt Jenny Speas - let's hear it for the Jennifer generation!) is a dancer, and it looks like we may have another one on our hands. Here's Becca's first ballet lesson! (Don't mind the poor cinematography...it was an odd space.)

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March for Babies!

2011-02-06T21:54:00.003-06:00

It's March for Babies Season!

Mark your calendars, folks - the 2011 Nashville March for Babies is only 10 weeks away! And Becca wants YOU

to be on her team!

You know that we are big fans of the March of Dimes in Itty Bitty Hill country. Not only have they given SuperMom an awesome job, they have also made it possible for me to have THE BEST JOB EVER - being mommy to the little missy herself! Without their research and specifically their work in bringing about a regional NICU system and the development of the surfactant therapy that helped her lungs in her very first days of life, I would likely be more well-rested and wealthier, but very, very sad...and Becca-less.

You know, we had actually picked out a different name for a girl when we found out that Becca was having trouble. But we decided to save that name for a daughter who would live and settled on Rebecca Marie. Rebecca is significant on both sides of our families (my mom and John's aunt), and Marie sounds good with Rebecca (the reason John picked it out) and is my oldest friend in the world (the reason I agreed to it). If Becca didn't make it, she would always be our Baby Becca; if she did, she'd have options as an adult (Becca, Rebecca, Becky, Beck, whatever). But our *other name* (which I'm not going to tell you), we saved for a sure bet. (Ah, ignorance is bliss...like any pregnancy or child is a "sure bet".)

I've never, ever in my life been so glad to be wrong.

And frankly, the March of Dimes played a major role in proving me wrong. And I still love them. :) Over the next few weeks, I'll be sharing more ways the March of Dimes has been making a difference in the lives of families and babies throughout the world for over 70 years.

Itty Bitty Becca's team has set an overall goal of $2500 for this year's march. That's a significant increase over last year's total, but I really believe that we can do it! We have several team members raising funds on their own, and we've actually already got $300! If you are interested in talking with your friends and families about contributing, you can either share the link below, or sign up on that page so that you can set up your own fundraising goal and personal page. (It's really easy - just takes a minute. I recommend a personal goal of $200.)

We'll have a couple of ways to contribute over the coming weeks (including t-shirts again!), but to start us off, let me highlight two:

Cold, hard cash...er...credit cards or PayPal, that is. The most cost-effective way to contribute is a straight-up contribution. To do so, visit www.marchforbabies.org/BeccaHill. If you prefer to contribute via check, please let your e-mail address in a comment so that I can contact you with our home address.
Shop Itty Bitty Books! For the month of February, I will contribute ALL of the profits from orders placed through this link. (If that link doesn't work for you, go to www.ittybittybooks.info, click to enter the store, click on "March of Dimes Benefit" on the right and shop away!) So if you've been meaning to replenish your kids' (or grandkids' or classroom') library or to stock up on awesome birthday gifts, this is a great time to do so!

And if you still need a reminder of what the March of Dimes means to our family, let the Itty Bitty ~~Parrot~~ Becca herself explain why you should join our team. And then visit www.marchforbabies.org/BeccaHill to contribute or to sign up to walk with us.

Thank you for your help - and we look forward to walking with you (in person or in spirit) on Sunday, April 17 in Centennial Park!

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Weekly Weigh-In...

2011-02-03T19:30:00.000-06:00

...the just kidding version.

We skipped therapy and the weekly weigh-in on Wednesday because SuperMom was feeling super sinusy and miserable. If she's out and about tomorrow, we may swing by the ped to get her weighed. Maybe not. It is 20 miles from our house, after all.

However, I did just watch Becca eat an entire hot dog. Thank you, Nathan's, for your 170 calories and 15 grams of fat. Couldn't have gone straight to the bum of a better girl.

Big Girl Bed?

2011-01-31T07:32:00.001-06:00

Becca and I made a quick trip to Target last night. And though it's not really related to this post, I've got to tell to tell you that on the way to the store Becca was chanting, "Yay Tardet! Yay Tardet!" I've never been prouder. BUT - the point is that while we were at the store, Becca picked picked out this:

It's her big girl bedding set!

(Please forgive the phone photo. We seem to have gotten one of the last three sets in the world, as they are not available on Target's website, Amazon or Ebay. Shoot - maybe I should sell this sucker for a 300% profit!)

Becca got to choose from among alphabet, flower and puppy bedding sets, and she chose alphabet. She knows how much her mommy loves words. :) When I handed the package to her, she tossed it (very awkwardly) into the back of the cart and said, "HOME!" I felt like was driving her getaway car.

We are hoping to pick up a toddler bed from a friend in the next couple of days. We've already got a hand-me-down bedrail, so once we get the bed, we'll be good to go.

Apparently I'm dead-set on making the switch to the big girl bed. But I'm not exactly sure why. I could give you several good reasons why we shouldn't move Becca out of the crib, but I just feel like the time is right. She doesn't know how to disconnect her feeding tube (on purpose, at least), so she'll be tethered to her pump, which will keep her from wandering around her room. I'm planning on putting the bedrail up (if it's possible to use on a toddler bed) so that she's semi-contained, since she's not able to climb/crawl over things very well. She is a good sleeper and usually goes to sleep quickly (with the occasionally restless "naptime" being the exception - but that has gotten better since we started hooking her up to her pump during naps).

I don't know. She's 2 1/2 now. I think she's ready. I think I'm ready. I've wanted to do it for a while now but have made myself wait. But it just feels right. I think we might just go for it!

What do you think?

p.s. This is a good opportunity to see how often SuperDad checks the blog, as he's not fully aware of my crib graduation plans. He might just be in for a surprise when he comes home from work one day this week.

I SEE You!

2011-01-28T10:15:00.002-06:00

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

Downward Dog Dance

2011-01-27T09:07:00.001-06:00

You may have heard me talk about Sesame Street a lot lately. That's because a) it's awesome; and b) we got the best Sesame Street video set ever for Christmas (40 Years of Sunny Days). We all love it, particularly because there are lots of celebrity cameo musical appearances (like Tony Bennett singing "Slimey to the Moon" and Destiny's Child singing "A New Way to Walk" - Becca's favorite). Becca particularly loves to dance along. Here she is rockin' it out with the Goo Goo Dolls. (And in case you need the translation, at the beginning of the video, she invites (commands) me to dance with her: "Mommy danse!")

Photo and video editing at www.OneTrueMedia.com

Weekly Weigh-In: The You're-REALLY-Not-Going-to-Believe-This Edition

2011-01-26T21:53:00.002-06:00

Last week: 9.3 kg (20 pounds, 9 ounces), 31.5 inches

This week: 9.6 kg (21 pounds, 2 ounces), 33 inches

Weeks change: +300 grams (9 ounces), + 1.5 inches

Net change: +1900 grams (59 ounces = 3 pounds, 11 ounces), +4 inches

I knew this was going to be a big week. But I didn't think it was going to be this big again! Even though Becca threw up 3 (or maybe 4?) times, she has been looking v.e.r.y chubby. So chubby in the cheeks, in fact, that the possibility of mumps crossed my (hyper-vigilant) mind more than once. In lighter moments this week, though, I taught her to play the old youth group favorite "Chubby Bunny". (She's been "packing" a lot this week - filling her cheeks with food like a chipmunk without actually eating any of it.) She's a champ. And again, I don't think she grew 1.5 inches in a week, but I think the past few weeks have been short. She's definitely been getting taller lately.

Dr. Rawls still isn't worried about the pace of the weight gain. (Because of her risk of metabolic issues, I'm a little nervous when she puts on so much weight at once.) He is quite proud of her, though, and made a point to show her off to a resident who was in clinic today. Sure, he's impressed with her medical history/recovery/story, but he is mostly impressed with her awesome monkey impression. The girl's got skillz.

Things I Forgot To Say: Becca's First Boat Ride

2011-01-25T23:25:00.002-06:00

I've mentioned before that my parents now live in a magical fairyland of ~~old people~~ active retirees on Tellico Lake. Originally, they bought a ski boat to take out on the lake, but the soon traded it in for a pontoon boat because, according to my mother, "It's hard to drink wine in a ski boat." I love everything about that statement. Pontoon boats, as luck would have it, are also a lot better suited to the youngest of passengers, which is important because Becca's got 7 cousins on that side. Several weeks after her g-tube surgery, on Labor Day, we finally got to take Becca on her first boat ride. Enjoy - we did!

All suited up (in double layers to stay warm) and ready to go!

Gotta protect those eyes!

Y'all take a break. I got this.

And now I'll take a break.

Becca liked lying on the floor of the boat.
I joined her and counted it as sensory integration therapy -
lots of vestibular stimulation throughout the ride!

Getting her first driving lesson with Granddaddy

Now we're having fun!

But not as much fun in the water.
The kiddo has so little meat on her bones that she gets cold REALLY quickly.

The view from the boat. And, no, Grandma and Granddaddy's
house is not *quite* as nice as these. :)

This picture makes me smile.
SuperDad and his mother-in-law, lounging on the noodles.

Granddaddy rescued Becca from the water and helped her warm back up.

She then went about exploring the boat a bit more...and found this storage cabinet.

SuperMom was worn out and took advantage of the
opportunity for a nap in the sun. Nice.

Back at the house, hanging out on the porch...and trying to decide
if she should let Mommy open the door to join her.

Transfusion Bingo with RESULTS!

2011-01-20T20:33:00.000-06:00

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

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

Wednesday Weigh-In: The You're-Not-Going-To-Believe-This Edition

2011-01-19T16:26:00.000-06:00

Last week: 9.0 kg (19 pounds, 14 ounces), 31 inches

This week: 9.3 kg (20 pounds, 9 ounces), 31.5 inches

Weeks change: +300 grams (11 ounces), + 0.5 inches

Net change: +1600 grams (50 ounces), +2.5 inches

Yeah, WHAT THE CRAP? Up 11 ounces in one week? We weighed her twice to make sure - and got consistent results. Same scale as every week. Stripped down totally naked, like always. And she gained 85% of her birthweight in one week. Wowzers!

Dr. Rawls thinks that part of the massive gain is due to the fact that she had been sick (perpetual cold), but has been feeling better this week. You naturally drop weight when you are ill, but you pick that weight back up pretty quickly.

I, on the other hand, chalk it up to the Olive Garden!

Baby Rosie

2011-01-18T09:28:00.001-06:00

Santa brought Becca a very special baby! Meet baby Rosie, the newest Bitty Baby in the Hill house (the first, of course, being Becca). (And yes, the Reverend Cheap-O (that'd be me) did actually purchase a brand-name baby doll. I mean, how could I not? They named the entire line after our Itty Bitty!) Becca loves baby Rosie and, frankly, I love her, too. Maybe if this whole conception thing never does work out, I'll get one for me, too. But I digress. Actually, that's about all I have to say about Rosie. Can you believe that? Few words from me...who knew it was possible?

In sum: Rosie is pretty swell, and her presence somehow makes Becca even cuter. See for yourself:

She's fascinated by Rosie's fancy open-and-close eyes.

And she loves to de-clothe her. Theoretically, she likes to change her clothes, but she
hasn't figured out how to put them on her...so she gets her nekked, and I dress her.

The moment before Becca, of course, tipped over backwards.

Again with the eyes...or maybe doll CPR.

Recalled stroller or user error?

Awwww...

I can't get over how old Becca looks here!

What every newborn needs: a cup of water, a spoon, and a hamburger bun.

Things I Forgot To Say: TennCare Decision

2011-01-17T21:21:00.000-06:00

Not sure how I forgot to tell you all this one, but Becca gets to keep her TennCare! I went for our interview last month, waited forever, then sat in a cubicle while the agent typed a bunch of numbers into the computer without even looking at me. After a few minutes, he turned to me and said, "She's accepted!" I said, "What? Just like that?" and he smiled and said, "Yep. She's good for another year." I'm not even kidding when I say that he looked like Santa Claus in that moment. This news is SUCH a relief to us. When I told John, he was so happy he felt like doing this:

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A Snowy Observation

2011-01-15T17:32:00.002-06:00

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

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

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

Food, Food and More Food

2011-01-14T08:20:00.003-06:00

At our weigh-in on Wednesday, Becca also had a quick check-in appointment with Dr. Rawls, our general pediatrician. Have I mentioned how much I love him lately? Or how much I love general pediatricians in general? So often the specialists get caught up in trying to solve the particular problems in their respective areas that they don't stop and look at Becca as a whole, real patient. And they aren't really concerned with solving the problems we, as a family, see as problems. Our peds, though - Dr. Collins in Gallatin and now Dr. Rawls - have been AWESOME about listening to us (mostly me!), looking at the big picture, and trying to figure out what is truly best for Becca - not just how to fix what they see as an isolated problem - or something that I think is a problem but isn't to them, medically speaking.

I'm talking, of course, about Becca's vomiting and lack of weight gain. Which is a problem (or two problems, depending on how you look at it). It's a problem for Becca physically, but I'm afraid that it's also becoming a problem for her in other ways. For example, Becca got a baby doll for Christmas. She LOVES Baby Rosie and wants her to do what Becca does. Baby Rosie eats a snack while Becca eats, she reads books while Becca reads, and she goes "night night" in her crib when Becca goes to bed in hers. Pretty typical (and adorable). But the other day, she tipped Baby Rosie over and made her throw up, then her lifted up to shoulder and patted her, saying, "It's okay, baby; it's okay."

Well. It seems throwing up is as much a part of Becca's routine as getting dressed. Or sucking on a paci (though mean old mommy and daddy are making this less and less a part of her routine). Or, oh, eating. Yeah, eating. And since, in Becca's world, what goes down must come up, the puking doesn't exactly encourage the eating...which then doesn't encourage the weight gain.

The GI doesn't seem to see this as a problem. Which is baffling to me. But they are, apparently, useless on this issue.

Dr. Rawls, though, agrees that this is not, um, optimal and helped me work up a plan. The biggest change is that we are going to hook her up to her feeding pump during naps, since these are usually puke-free. She's still a good napper at home, so that's a chance to get another 2-3 hours of feeds in her during the day. We're also going to be more aggressive and consistent with bolus feeds throughout the day. (And by "aggressive," I mean that I'm not supposed to be afraid that filling her up with formula will mess up her oral feedings (i.e. real meals). The girl needs calories, and getting good nutrition actually stimulates your appetite, since without it your body goes into starvation mode...and this is the frustrating cycle of the failure to thrive issue.) We're not going to get into taking the feeding pump to school, but I did teach her teachers how to do a bolus feed this week. (So much for being able to go to a regular preschool!) Unfortunately, Becca threw up during her bolus feed today. I'm really hoping this doesn't become a pattern because in one bolus we can get an extra 90 calories in her - a significant part of the 980 calories she needs every day.

On the upside, though, Becca is eating orally more and more. She's (obviously) still not a true oral feeder, but she's trying some new things and increasing her volume of things that she likes. She's particularly fond of meat these days, which is GREAT because she needs a high-protein diet. Generally speaking, she likes strong flavors because she can taste and find them better in her hyposensitive mouth. Her taste buds need a little waking up.

For example, last night we cashed in some Olive Garden gift cards and celebrated my birthday (thanks, Jen!). Becca is a really, really big fan of the Olive Garden, and it never ceases to amaze how much she will eat there. She even cried big tears when we were leaving because she wanted to stay and eat some more. (We left anyway because what she wanted at that point was to eat more Andes mints...which are neither optimal nutrition nor conducive to a smooth bedtime, which was next on her agenda.) She started off her meal with a lemon slice, chomping on the middle part and eventually taking bites out of the rind itself (not uncommon). She then moved on to gobs and gobs and gobs of grated Romano cheese. Seriously, every time a server walked by, she asked for more cheese. I'm guessing she ate a good 3 ounces of cheese. When the salad arrived, she had some onion, a few bites of pepper (banana peppers? I don't eat peppers, so I don't know what kind they are or how spicy they are.), and...her favorite...black olives. When our entrées arrived, she ate some of my chicken marsala and a bite of John's braised short ribs. And then she was back to the cheese. And the Andes mint. And she did NOT want to leave the "Ah-yiv Darden!" Big. Tears.

I take this as a good sign, both that she WILL eventually learn to eat enough orally AND that she actually is my daughter. I do so love a good Italian meal. Perhaps in the future, Becca will, too, sauce and all.

Wednesday Weigh-In

2011-01-13T22:40:00.000-06:00

Last week: 8.95 kg (19 pounds, 12 ounces), 31.5 inches

This week: 9.0 (19 pounds, 14 ounces), 31 inches (Seriously, I might just stop posting the length, though it's handy to keep track of it in the long run. This was measured by the same woman and on the same table as last week and two weeks before that. In the past 3 weeks, she's "lost" a full inch and a half...and yet is taller than ever.)

Weeks change: +50 grams (2 ounces), - 0.5 inches

Net change: +1300 grams (39 ounces), +2 inches

Up a bit!

Things I Forgot To Say: Becca's Garden

2011-01-11T08:42:00.005-06:00

While I can remember freakishly minute details of things that happened years ago, I am horrible at remembering practical things. You may say I'm much too young, but I, with startling regularity, will walk into a room and not remember why I am in there. Lately, I've even been forgetting a thought mid-sentence. I chalk it up to mommy brain, but feel free to diagnose me otherwise.

But the point is that this forgetfulness has affected my blogging. There is so much that I meant to tell you about in 2010 that I simply forgot to mention. I mean, I definitely remembered these things a lot, even writing posts in my head, but I never remembered then at a time when I could actually sit down at the computer and write. Oops. Some of these thoughts and stories will fall by the wayside, but there are some that I'd like to document - like, say, Becca's 2nd birthday! (Yep, never got to that one...got caught up in the hospital drama, then traveling, etc.) So for the next few weeks, I'll be running an oh-so-creatively-named series called "Things I Forgot To Say." Might as well call it like it is. :) So first up: Becca's new bedroom.

When we moved to Spring Hill in June, we bought a house, which meant that, unlike living in a parsonage, we could do whatever the heck we wanted to it. And what I wanted was for Becca to have a cozy, magical room for her pre-school years. Lucky for me, our friend Jeannie has the talent and kindness to make my dream come true! For Becca's birthday present, Jeannie painted a mural in her room - on all four walls! John and I painted the walls "twilight purple" and Jeannie transformed it into a gorgeous garden at dusk.

It is so beautiful. It's cheerful and calming at the same time. I love it so much that when Becca isn't home, I sneak in there to sit in the rocking chair and read. When I was rearranging Becca's furniture last week, I took the open-walled opportunity to snap some photos of it. It's a small room (and I'm not a great photographer), so I wasn't able to get pictures of entire walls, so you'll have to use your imagination to picture how it all comes together. But trust me, it's awesome.

First, let me tell you about the decorations. Since the walls themselves are so beautiful, we choose not to hang many of the pictures that were in Becca's room in Bethpage, but we kept a couple of things. Here are the BECCA letters that Aunt Robyn made for her (and Becca can name each of the letters now!):

And this next piece of artwork makes me cry a little (in a good way). You've heard me say before that we had the BEST primary nurses when Becca was in the NICU. One of these five amazing nurses, Stacy, is also amazingly crafty. Since she worked nights, when the NICU is calmer, she had a little more time to "play" with the babies. Every month, she took footprints of Becca's tiny feet, heels touching to make a heart shape. She matted and laminated them and left them for us to take home. I saved everyone of the them and had them matted and framed, along with her crib card that I count as a badge of honor, bearing Becca's tiny statistics at birth. I love how it turned out, and I will be forever grateful to Stacy for taking the time to make such a special keepsake for us! Here's a picture of the entire piece:

And one of the crib card:

And one of her first footprints next to my thumb for size reference:

And then the last footprints taken shortly before we brought Becca home:

Okay, without further ado, here is Becca's garden! (The pictures go around the room clockwise.)

(I'm posting this one mostly so you can see the funky cut-out over her closet. What do you call that? When I get my act together, I'm planning on draping some flower garland off of it.)

(Note the gorgeous curtains that were passed on to us by my friend Scottie - so perfect!)

Becca's crib now sits right under this tree.

I think it will be especially cozy when she moves to a big girl bed!

See the handprints at the bottom of that bush? Here they are up close. Jeannie and Nana Dana surprised me with this detail, which is SO precious! Becca loves to put her hands on them and give herself five.

I mean, seriously, you want to move into her room, too, don't you? Stacy, Robyn, Scottie and, most of all, Jeannie, thank you SO much for making Becca's space special!

The Snowy Day

2011-01-10T14:38:00.003-06:00

For the third time this winter, we've gotten a few inches of snow on the ground! It seems like this is going to be one of the snowiest winters in Tennessee's recent history. Or maybe I'm just noticing it more this year because Becca actually likes to play in the snow this year. When she and I went out in it today, she even walked in the snow without me! This is a significant improvement in her perception of the snow (remember, anything getting on your hands, clothes, etc is taboo) and in her motor planning, since it takes a bit more coordination to walk on a surface that shifts beneath you. I was very proud of how she played today!

We built a snowman,

Whom she "hugged,"

And "kissed,"

And to whom she said, "Ho ho ho!"

(Becca learned to sing "Frosty, the Snowman" at school, and she loves snowmen now. Note the carrot nose - that was very important to her.)

We made a snow angel, after which she kept requesting (via signs and words) "more sho-andel!"

So Mommy made one beside her:

But then she realized she was "duck," which is Becca-speak for "stuck." Actually, she was eventually able to get up on her own - another great PT workout!

And we explored (after the dogs dug up the mulch through 3 inches of snow!):

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(And, yes, that was "Uh-oh, Dettios!" you heard her say! I'm not sure where she learned how to (kind of) say, "Uh-oh, Spaghetti-O's," but I never tire of hearing it!)

Brilliance

2011-01-08T18:38:00.001-06:00

Becca has been asking to watch Elmo all day. John has been enjoying the NFL playoff game and didn't want to watch Elmo.

Becca gets more and more insistent as I'm playing with her. "Elmo?" she says. "Elmo? Elmo! ELMO!" I (passing the blame) say, "Daddy won't let us watch Elmo." Becca pauses, and then says, tentatively, "Ear drops?"

It takes me a minute, but then I say burst out laughing. When we give her eardrops, she has to lie on her side for 10 minutes, which is i.m.p.o.s.s.i.b.l.e to accomplish without an Elmo video player (and only fractionally possible with one). I ask her, "Becca, do you want ear drops so you can watch Elmo?" to which she slyly responds, "Yeeeesss..."

And SuperDad finally relents.

The little stinker!

I Am Job.

2011-01-07T16:09:00.001-06:00

I totally stole that title from my friend Sarah. And Mrs. Doubtfire.

But I am job! I mean, I have a job! One that totally fits me!

As of January 18th, I will be the Family Teams Specialist at the Music City Division of the March of Dimes. That means I'll be working with families like ours, recruiting March for Babies family teams, helping them meet their fundraising goals, and making sure they have a wonderful experience on the day of the Nashville March...which, by the way, is April 17 in Centennial Park. Mark your calendars - and go ahead and register your team!

I'm so excited! It's a part-time position that will work with Becca's school schedule (with some extra flexibility and help from SuperDad), and I'll be doing what I love and helping babies. The only downside is that it's a temporary position, just for the March for Babies season, so come May I'll be looking for jobs again. For now, though, I'm just super-excited!

Christmas in Pictures

2011-01-06T23:01:00.002-06:00

Our Christmas celebration got off to a rough start, what with 352 miles to drive after Christmas Eve services and a significant (for the south) snowstorm that hit us just as we hit the road. Even after our sage senior pastor suggested we skip the second service and leave a few hours earlier than planned, we ended up in the middle of the storm. It was a heckuva drive, with the car loaded down, 2 dogs in the back, Becca on her feeding pump (she threw up, of course), and (eventually) several inches of snow on the interstate. Though we were really hoping to make it to Ashland, Kentucky (John's home town) before Christmas morning, we ended up giving up on the east side of Lexington and spent the remainder of the night in a not-so-Best Western in Winchester. We didn't have a crib for Becca, so she and I (tried) to sleep in a double bed together, while John attempted to keep the dogs in the other bed with him. That didn't work so well...any of it...the dogs, the beds, the sleeping. I think the low point was when Becca and I were laying in bed together, and she threw up on my face. Merry Christmas, y'all.

BUT - by the time we left the next morning (after a grand total of 3 hours of sleep), the mysterious Christmas plowmen had cleared the roads, and we had a fabulous trip from there on out.* Here are some of the cuter moments of our week in Ashland.

Even though John's, you know, calling from God kept us from Nanny's house on Christmas Eve (and, believe me, a calling from God is about the only thing that gets you an excused absence from Nanny's), we did make it to town early enough on Christmas morning to join John's extended family for the tail end of the traditional Christmas breakfast and stocking-opening. I intentionally left Becca in her p.j.'s when we left the hotel because every kid should open presents in their "jammies" (as Becca says) on Christmas morning.

Becca loved playing with Nanny's decorations!

She was WAAAY into her stockings this year - literally and figuratively!

Becca is ALWAYS happy to see her Aunt Jen Jen - and to eat a lollipop!

We finally got to meet our newest cousin, baby Jillian, who was kind enough to
share one of her many Sing-a-ma-jigs with Becca. Jillian is so adorable and cuddly!

As you can tell from this picture of John and the one of me above it, SuperDad and I were not feeling
so Super after our super-fun Christmas Eve. Didn't phase Becca, though - especially since she had so
many other folks to pay attention to her! She's in the background with Nanny and cousin Jayden.

After breakfast, we went back to Nana and G.G.'s house to open presents. There were, um, a few packages to be unwrapped, especially in Becca's pile.

Don't mind the reflective dog in the middle of the shot. With 4 of them in the house,
they were in the middle of everything (but were very well-behaved, surprisingly!).

Becca liked all of her presents (and the process of opening them), but she really, really liked these
adorable slipper socks from Aunt Jen. She just had to get up and dance around in them - so cute!
(It's not the greatest shot, but YOU try to take a picture of a dancing toddler!)

That evening, the extended family got together again for Christmas dinner at Nana and G.G.'s. (The Hitchcock family doesn't mess around with holidays! They like to celebrate as much as possible! :) ) I love this picture of Nana and her sister, Aunt Robyn, and their youngest grandgirls (as Nana likes to call them), Becca and Jillian. (They may kill me for putting them on the blog, but I think they look sweet!)

The rest of the week was spent in general family togetherness, very laid-back. It was wonderful! John and I even got to sneak out and see TWO movies at the Ashland theater - where it's only $3 a pop for first-run movies! Love that bargain! Here are some highlights:

On Sunday morning, we got to attend church as a family, like normal people.
It was nice to be back at South Ashland UMC, John's home church.
Becca got to wear her Christmas dress again. Here she is posing after church.

Aunt Robyn runs a salon and is great about making us beautiful when we visit. This time,
Becca got her first-ever Aunt Robyn haircut! She did great - she really liked it! Robyn
didn't take off much but she did rescue Becca from the emerging mullet.

Again, Becca had fun playing with the decorations, especially the jingle bells.
You can also see how much better her hair looks now!

There was lots of lazing about, and Becca bounced from lap to lap. If you were sitting down,
you could bet that you'd have a dog lying near you in about 2 seconds. I think that's Katie,
one of the scotties, behind John, and Sasha T. Dog on his right.

There was also lots of eating out, during which Becca cooperated less and less
as the week progressed. I mean, who wants to sit still long enough for us slow
grown-ups to order, wait and eat? Guess I can't blame her.

And this is unbelievable - there is a ROCKET in the Ashland mall!
Who knew that Eastern Kentucky had such a well-developed space program?
Needless tosay, this ride was definitely worth its 75 cents!

* I should say that we had a great trip from here on out even though all 3 of us ended up sick. I mention it because it means that every single time we have travelled with Becca, she has gotten sick or sicker than she was. What's up with that?? John and I had nasty sinus/cold stuff, and Becca's cough and cold got even worse, which made for a good bit of middle-of-the-night vomiting. But at least it wasn't in my face anymore. I count that a win.

Weekly Weigh-In

2011-01-05T14:11:00.000-06:00

Sorry to start back with a lame weight check post, but it's Wednesday, after all! I'll try to get something with pictures up later. But here are this week's stats:

Two weeks ago: 9.0 kg (19 pounds, 13 ounces), 32.5 inches

This week: 8.95 kg (19 pounds, 12 ounces), 31.5 inches

Two weeks' change: -50 grams (1 ounce), - 1 inch

Net change: +1250 grams (37 ounces), +2.5 inches

And that puts us right where we were on November 17th. No gain in 7 weeks. If only we could keep her from vomiting...I'm really starting to wonder if we should have done the nissen surgery that would prevent her from throwing up. The doctor didn't think it was necessary, but, like I've said before, he's never actually seen the massive pile of puke.

Becca got a baby doll from Santa, and today she made her baby throw up. Good pretend play, but I sure wish "doh dup" wasn't so embedded in her psyche.

(On the upside, though, Becca has just about kicked the cold she picked up travelling, and she actually signed and said "eat," walked over to her high chair and said, "Yeah, yeah," which roughly translates as, "Please do whatever it is that I am asking you to do, right now, please." (She's quite the combination of stubborn and polite, little stinker.) That's a good sign!)

We're Ba-ack!

2011-01-03T13:55:00.001-06:00

How about that for a Christmas break? I guess moms get them, too! But we're home, back to the routine, and hopefully back to blogging. I don't have much time right now, as I've got BIG plans for this naptime (taking a hot shower! Wow!), but I'll give you one nugget of fun in the Itty Bitty household.

This morning, I woke up to Becca screaming. I figured that she had thrown up again like normal, but when I rushed into her room, she was waving her hand and yelling, "Pooh pooh! Pooh pooh! Pooh pooh!" Yep, you guessed it, folks: her sweet little hand was covered in poop. She had apparently pooped and then stuck her hand down her diaper. (Why, I'll never know.) Luckily for me, she was so freaked out by having something on her hand (and not just because it was poop - anything visible on her hands elicits this reaction) that she was standing stock-still, except for the hand waving. Much easier clean up that way. See, sensory issues do have their upside. No poop-smeared walls in our house (yet).

Be sure to check back the rest of the week for some picture-laden Christmas recaps and a 2010 year in review series!

TennCare Cuts

2010-12-17T22:20:00.001-06:00

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.

Weekly Weigh-In

2010-12-16T09:01:00.000-06:00

Last week: 8.85 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!

1-2-3 Blast Off!

2010-12-15T06:37:00.002-06:00

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!

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Aubrie's Angels

2010-12-14T10:01:00.007-06:00

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!

And the Winner Is...

2010-12-10T21:26:00.003-06:00

Peace Love Ribbon Christmas Card

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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!