Tiny Dancer

Tiny Dancer

UPDATE

Rebekah had her thyroid levels checked on Monday, June 6; she was 16 weeks exactly. She currently weighs 10lbs 13oz. (She weighed 8lbs 10oz at her 13 week appt). So her little body has really been doing good catching up on weight gain this past 3 weeks!

Her thyroid levels were pretty much the same as they were 3 weeks ago at 13 weeks. Her 16 week levels–

TSH 8.28 (it was 8.18 at 13wks, and 38.56 at 4wks old) (high is bad)

fT4 0.89 (it was 1.13 at 13 wks, and 1.21 at 4 weeks) (low is bad)

Her T3 level was never checked at any of these times. T4 converts to T3, so we will be asking the endo if all her levels can be checked. 

At 4 weeks, they wanted her to start synthroid and to get a radioactive thyroid scan. We chose not to at that time. After a series of very aggressive and threatening  phone calls from the nurse, we opted to move to a new pediatrician. And we were subsequently reported to DHS for child neglect. (Read more on that here and here).

Then after the results at 13 weeks, the new pediatrician (after consulting the endocrinologist) just wanted her levels checked again at 16 weeks (which we did Monday), and he set up a consultation with a pediatric endocrinologist in LR. No medication was prescribed at that time. 

Since Rebekah’s numbers at 16 weeks were pretty much the same as they were at 13 weeks, I kind of thought/hoped they would just want us to wait it out til June 30 (the endo appt).

However, the new pediatrician recommended she take synthroid until the endo appt, and then they will recheck levels again (she will be 19 weeks at that appt).

Keith and I talked it over, and we decided to start it. Not that we don’t have reservations, not that we won’t contact the doctor if she has bad side effects (loses weight, stops eating well, won’t sleep etc). I made a chart, and for the next 3 weeks, we are going to continue to track her progress in several areas (ounces consumed, pees, poops, sleep schedule, temperature, weight, and any other changes), and we will note the changes–good or bad. 

We are a team, Keith and I and our children. We disagree at times; we state our reasons; we talk it out; we make a united choice. A team. 

I won’t lie–it is my hope that Rebekah will be weaned off this synthetic hormone and that her natural thyroid will continue to improve on its own.

THE PROCESS

She took her first pill today, 25mcg daily. She weighs only 10lbs, so compared to adult dosing based on adult weights…this dosage sounded high to me for a 10lb baby. But we are going to see how it goes. 

We had to crush the tablet into a powder and mix it with water and use a syringe. It is supposed to be given on an empty stomach, and no foods with calcium or iron for 4 hours after.

So that was certainly hard to work out with a baby who eats only milk which is full of calcium.

She went to bed at 9pm last night; we went to bed around 10:30pm. She woke at 1:20am for a feeding. Then we woke her at 3am to feed her as much milk as possible, then we woke her again at 5am to give medicine only, then she woke at 7am hungry. Who needs sleep?

The pharmacist said to just try to do that…space it in between feedings…where her stomach will be empty from the previous feeding, and can stay empty as long as possible (even if she can’t make it 4 hours).

She eats every 2-3hrs during the day, so I do think this schedule will be the best–taking the med super early in the morning. A midpoint time between big feedings. Not easy though. 

HARD SCIENCE

We still have reservations about this entire diagnosis, treatment recommendations…all of it. 

Most health issues have standardized levels for things–what’s considered high blood pressure, what’s considered high cholesterol, etc. 

For congenital hypothyroidism, there is a different “normal range” for infants at every different lab, every different hospital, every different state. It’s insane. 

Most charts consider age to be a factor, but barely any charts consider weight as a factor. This is “hard science,” how? 

Why so many charts and ranges at all these different hospitals? Is there no consensus?

Also, Rebekah’s low birth weight, the fact that her cord attachment was velamentous (so she was likely IUGR)…none of these factors were taken into consideration when comparing her blood concentration and/or thyroid levels to “normal ranges” of average weight babies. 

Should IUGR, SGA, premature, and/or low birthweight babies be compared to the ranges of average sized newborns? Their blood concentrations are different. As I found in my reading, these exact questions divide the experts’ opinions on treating mild congenital hypothyroidism. (See my other blogs about Rebekah for links to these articles).

MENTAL RETARDATION

From my reading, the babies born with severe congenital hypothyroidism have TSH around 750-1000, and yes, those cases can lead to mental retardation if left untreated. And I read those cases usually lead to mental retardation even when they ARE treated, and even when they are treated early

But I never saw ANYthing suggesting a case of TSH of 8 ever leading to brain issues (or even untreated TSH of 38). Not whatsoever, and I’ve been reading like an obsessive nut. Did anyone find information on mild, untreated CH cases leading to brain damage?

So I reeeeally take issue with the nurse at the first pediatrician basically screaming BRAIN DAMAGE at us on the phone 3 different times, over and over. I really take issue with her/them reporting us to DHS as neglectful parents. 

Maybe this is protocol behavior? Is it? If so, then I take issue with this fear-mongering, bullying protocol. Where do I campaign for it to be changed? 

The doctors use a vague statement “congenital hypothyroidism has been linked to mental retardation.” And that’s true…the severe cases (treated or not). What about the mild cases? 

People can be motivated with fear, or with facts and information, or with concern and compassion. And not all methods are equally effective on all people. 

We don’t respond well to bullying, never have…never will. We were never given specific facts, only vague, unsubstantiated claims/threats of brain damage. We aren’t motivated by bullying, even when bolstered by ignorance. We received no kind guidance, concern, compassion, patience. 

I feel that too many factors are ignored, and that a blanket treatment approach is preferred (forced if possible) instead of monitoring levels a few times. 

REACHING OUR DECISION

I do know so many adult friends who have told me they take synthroid, and have no side effects or issues. Adults who have finished their brain development, don’t weigh 10-11lbs, aren’t 4 months old. Their skeletons are finished growing, they stay pretty much the same weight, they have gone through life’s major hormonal changes, such as puberty (and some even menopause).

It’s just…I know a body can become dependent on a synthetic hormone and then stop making its own natural hormone. 

We felt that her body needed to be given the chance to normalize on its own…and we did give her time, and her TSH did lower  considerably, and is in normal range on many charts. And her fT4 was never out of normal range, and still isn’t on many charts.

But then on the flip side of that, we decided that “abnormal” results on 4 tests in 16 weeks was enough to start the medication and then retest at 19 weeks. 

We observe her daily in “life’s laboratory” at our home. No we don’t chart and record every change, but we notice changes  (and we record many of them).

She isn’t a ball of numbers; she isn’t a stack of lab papers; she isn’t a diagnosis; she isn’t a statistic; she isn’t a blob of data. 

She’s a baby. Our baby. A precious life we value more than our own. 

She’s been gaining so well (finally in the 8th percentile); she’s so happy; she’s hitting milestones. She does have days when her eyes look tired, but less and less lately. 

Is there enough going “wrong” that she needs a daily medication (possibly for 3 years, possibly for life)? We didn’t really think so, but we will try it, record changes, and will not ignore anything. 

Siiiigh, one day at a time. ūüôā

I’ll update after the endocrinologist appointment. 

Our little beauty, little miss tiny dancer
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Things Moms Carry

Things Moms Carry

“Nooooo!!! I yant CHEETOS!!” They aren’t Cheetos, but there are no battles of logic with a 20-month-old. They are the grossest bag of generic weirdo-brand bacon cheddar hot fries that I’ve ever seen. 

“Let’s get…these chips…” I try quiet horse-whisper-bribery, which angers her further. 

“Nooooooo!” She squeezes the bag so hard with passionate angry-love, I do think the cellophane seal might pop. 

“Okay okay…release!” I finangle the bag from her grip. Her moist hands streak across the bag producing the syncopated stuttering of poorly strung bow. 

So we carry Tito’s acid-burp bacon chem-fries around the store. I say “we,” but I mean *I* carry them and I carry…Clara because she insisted on walking instead of riding in a cart but then got tired…and Clara’s giant baby doll because she couldn’t possibly leave her in the van…

Oh annnd…the other 7 items I collect while Keith waits with our cart on 8 deli employees to take 20-min to slice him 1-lb of roast beef…alternately speaking to each other about their break times, avoiding direct eye contact with customers, occasionally asking him if someone helped him, and forgetting what thickness he wanted. Holding up pieces of meat…this? Like this? How’s this slice? …and this one?

My bra is too tight, it is about 7:45pm, I am thinking–why did we wait so long before having supper? I am thinking–the minivan ride home is going to be horrendous with the defiant mood Clara is in. I am thinking–how am I going to sneak these laxative Cheetos out of her sight? I am thinking–what if we have to buy them and she eats them…and then digests them and then…!? I was thinking–Calgon!

I am thinking–

“You don’t understand! I coulda had class. I coulda been a contender. I could’ve been somebody, instead of a bum, which is what I am.” (On the Waterfront) <back of hand to forehead in dramatic pose> 

Then as I feel my bicep slowly sinking into the abyss of defeat, I feel Clara’s arms wrap around my head…she kisses my cheek a couple of times without me asking, “Love you…Mommy.”

Strength returns to my arm, to my heart. A life of purpose. 

Worth it. It’s all worth it.

…I didn’t buy them, and deep down I know she appreciates it. 

Grip

Grip

I hold a tight grip around what I think should happen. The kind of grip that has to be ripped off, where you have to hammer each finger repeatedly and pry and attempt to uncurl them. 

I don’t want this. 

I don’t want my oldest three daughters living their summer days a block away from my house with their stepmom while their dad works. 

Should I seat myself gingerly on a settee, spread my skirt folds around me properly and smile silently? Sit up straight with grace and poise and fan myself every so gently as I wave to my daughters  through my window?

But…I’m their mom. Should I pull out photos of myself with a weird mushroom haircut and toasted almond lipstick, pregnant at 21? A tent t-shirt, a layer of net maternity panties, a layer of cotton panel maternity jeans…with stylish boot cut openings barely skimming the top of my shoes because I never did find long length…is that what we all need to see to remember I’m the mom?

Should I highlight the “right of first refusal” clause and text it to Norman? I might have done that. And he says–that doesn’t apply anymore; they’re old enough that they don’t need a babysitter. 

Should I cry about it to my own mom? I might have. Should I create an analogy where Norman is at his house, I’m working 40 hours, and the girls are sitting at my house with their stepdad? I might have done that too. 

Should I think about our summer days of years past…dying their hair with punky colors, watching them play softball, giving each other manicures, taking them to swim, signing them up for the summer reading program, taking them to my gym where I ran the kids’ summer fitness program, teaching them how to crochet, helping them set up an eBay business to sell their outgrown clothes, tie-dying tank tops and tshirts, watching them learn to swim like champions with Tideriders, driving them to church camp…

Should I throw my phone at the bed and leave the room? Should I call my lawyer? Should I argue and debate and push my side of things down his throat? Should I say that she doesn’t have a right to play house with my daughters?

Maybe I did do all that.

Should I pray?

Should I feel my grip relax in a calm, peaceful way that no hammer could produce? Should I see his side? Should I let go?

I’m not saying I’m some shy, agreeable fairy by nature. I’m not. I’m not. I’m not full of gracious wisdom on my own. 

People don’t tell you this part of a divorce. And you don’t know it until you live it. And if you haven’t lived it, God love you, but you cannot relate. You literally cannot empathize. You can imagine as a friend or you can scoff as a non-friend, but that’s it. 

Sitting on the back deck with your two youngest daughters, close enough to hear your oldest three squealing and laughing in a yard just over the hump in the road. 

Maybe I should’ve just been a perfect person then? And not gotten two divorces…

Oh yeah, let me just get right on that. 

I wanted to be right. You know? I wanted things to go my way. I wanted to keep my grip locked tight, tight, tight. But I thought, and I prayed. And I texted back that we can do what he wants. I’m not saying I didn’t fight first, but…

It’s not always about being right. 

It’s about doing right.









guess i’m not the

guess i’m not the

People are so scared of…everything. So much damn fear. It’s exhausting.

The DHS investigators came over on Wednesday, May 11. Come on in, ladies. That’s all you will ever hear when you knock at this house. It’s not scary, don’t ever concede because you think it’s scary to have DHS visit.

They were so nice, much like the other two ladies who came in August last year when another Jewel in my eye called them over. I listened to them read the allegation from Nurse Benedict about Rebekah. Okay. Well, that was certainly full of half-truths, exaggerations, and easily-disproven lies.

I had my version organized and ready to email, much like I had in August when Clara had 10-12 flea bites. One of the nice ladies fed Rebekah her bottle while I emailed them tons of facts. I’ll relay¬†both DHS experiences in full detail soon.

The DHS ladies explained to me that 85% of the claims they investigate are completely unfounded. It’s not a shock to them, but it is a lot of red tape and paperwork. They see a lot of spite, retaliation, petty-tattling, and outright lies.

I appreciate them and their jobs, and feel sorry that so much of their time has to be spent on claims that they know aren’t legitimate.

I just wanted to encourage my friends–don’t live in fear. And also, when you know some Billie Badass has her scope zeroed in on you–document, document, document. Be an expert on your own self, and on your children. Keep a detailed factual journal…because as nice as the investigators are, it’s hard to rely on your memory alone. And documentation holds up better in court.

We thought about retaliating. You know…that’s only human nature. Find out if Dr. Dilk knows how his nurse treats patients, and if he condones it. Report them to the state medical board for a review of how they mishandled our dealings with them. Pay the $1200 charge for 3 well-child checkups in $5 a month; harassment is expensive. But, no. No. Like so many other unwarranted stabs at us, Keith and I decided to walk away from it.

They are not our concern. They deserve no such attention.

Our focus, our true concern actually IS our beautiful daughter Rebekah Ruby Kate. She’s not a rope in a tug-of-war. She’s not a bundle of numbers. She is not a diagnosis. She is in fact…our beloved baby. (Side note…she weighed 8lbs and 8oz last night. She is getting small little chub rolls by her bum. It is our hope that she will be 8lbs 10oz for her appointment with the new doctor tomorrow…3lbs over birth weight at her 3-month checkup).

We removed Rebekah from their “care” on Friday May 6, because we are seeking a second opinion (appointment is tomorrow at 11am). Nurse Benedict left our May 9 appointment on the books (as well as 3 other appointments that she kindly made for us with no communication).

I assume she didn’t cancel them in an attempt to make us look like¬†“no show” negligent parents. The thing is…I document EVERY detail of the truth when I start seeing the target lasers all over me. I have screenshots of every call she made to us, every call we made to her, days and times and call lengths…and notes on what was discussed.

I’ve had lots of friends and family message me individually with prayers and questions and true love and concern. I appreciate every one of you, and I will give updates. I will. It may take a few days after the appointment to get her next results in, and then it may take a few more days before I have the emotional energy to talk openly. But I will update. I will.

On Wednesday and Thursday, I was MAD. And it all makes me sad, too. Such a broken, backwards world. What are people’s true motivations and thought processes? Their TRUE ones. Keith and I both seem to have been born with an innate ability to piss off annoying people. Thank God we¬†were also born strong.

Keith and I talked it over at length. The nurse may have crowned herself our personal browbeater…but we aren’t hers. Nope. Not going to do it. Part of me¬†wishes we would’ve recorded some of her ludicrous calls. It was like trying to talk to an angry auctioneer.

We will not bow down to anyone, except God or Christ. This angers people, but it’s not a pride war. We aren’t playing her games. And then…I have to look for a benefit of the doubt, too. I have to try to think why, and I have to force myself to think…maybe it was just some CYA? But why the obvious lies?

He that is faithful in that which is least is faithful also in much: and he that is unjust in the least is unjust also in much. Luke 16:10

But it wears me out. I’m tired today. I’m tired. I’m tired of using my shield and armor to deflect. I’m tired of the bullshit, but most definitely…not defeated.

img_4342-2
Rebekah at 10 weeks old; she is now 13 weeks old…but alas my phone/camera is broken
IMG_2069
a few hours¬†after Rebekah’s beautiful water birth

A lovely song for a tired soul…

 

“A Bad Dream”

Why do I have to fly
Over every town up and down the line?
I’ll die in the clouds above
And you that I defend, I do not love

I wake up, it’s a bad dream
No one on my side
I was fighting
But I just feel too tired
To be fighting
Guess I’m not the fighting kind

Where will I meet my fate?
Baby I’m a man, I was born to hate
And when will I meet my end?
In a better time you could be my friend

I wake up, it’s a bad dream
No one on my side
I was fighting
But I just feel too tired
To be fighting
Guess I’m not the fighting kind
Wouldn’t mind it
If you were by my side
But you’re long gone
Yeah you’re long gone now

Where do we go?
I don’t even know
My strange old face
And I’m thinking about those days
And I’m thinking about those days

I wake up, it’s a bad dream
No one on my side
I was fighting
But I just feel too tired
To be fighting
Guess I’m not the fighting kind
Wouldn’t mind it
If you were by my side
But you’re long gone
Yeah you’re long gone now¬†

Ears, Nose, Toes…

Ears, Nose, Toes…

Why do fingernails grow before children can clip them for themselves?

And noses run. 

Ears need cleaning. 

Hair is not Kleenex, not a napkin. Someone tell her, explain it.

Buy the food. Eat the food. Crap the food. Clean the toilets. Remove trash. Sweep the crumbs. Wipe this. Dust that. Wear clothes. Wash clothes. Fold clothes. 

Clean the tub so that we can clean the humans. So that…

My existence can have a purpose. 

Sprint to stand still. 

Find a chair. Think too much. Cry. Get quiet. Teach me, God. How does a family work?

And why?

And when I get quiet. I do understand. 

  

Shakedown

Shakedown

You feel like everyone knows. You hate the bastards that knew all along. No one is my friend? No one could tell me? No one could kindly walk me to the exit door and discreetly whisper? No one? Thanks.

You are a deer crossing a road you’ve crossed many times before. And slam. A truck crashes into you. You never saw it coming.

I’m all right. I’m all right. Didn’t hurt that bad. Your back half is mangled. You try to convince everyone that you’ve always wanted to try walking with just your front two legs. Your friend abused his position in your life, betrayed your trust, didn’t even know they were bulldozing together and now there’s a shack being built from the scraps.

But he didn’t make you promises. She did. It hurts no matter which window you look in. 

I guess everyone would prefer that you run off into the woods, to heal or die out of sight. For the love of God, don’t drag your broken ass around in plain sight; people have to look away. They can’t bear it. Eye contact is a precise arrow. 

Well too damn bad. Sometimes we have nowhere to go hide, and we have to bitterly think–I’m sorry if the very sight of my existence causes awkwardness. I am alive. I’m still breathing. I don’t have the luxury of taking a month vacation. So here I am. Look away if you can’t look at me.

Ecce homo. Behold the man. Dancing the clumsy ballet of a damaged deer. And you don’t have to run into the woods. You don’t have to. 

I know how it feels to find the door locked. I know how it feels to peer into the window from the outside, fogging up the glass of a house where you used to feel safe and welcome.

I know you don’t want sympathy.

I know. 
.

.

.

So here are some songs…

“I Gave You All” Mumford & Sons

“I’ve Got Friends” Manchester Orchestra

“I taught myself how to grow old” Ryan Adams

“Crystal Ball” and “Bad Dream” Keane

“I know” Jude

“Where I stood” Missy Higgins

“So you don’t have to love me anymore” Alan Jackson