Sunday, December 30, 2012

Christmas 2012 in Canton GA

Liam's First Christmas! (in the outfit I made him from my dad's old sweater)

Liam on Christmas Eve in his new jammies-- made from a flannel receiving blanket

Cousin Time!  Liam & Roo bonding

Best family Christmas pic we got --at Woodstock Baptist Church

Eowyn in her new Christmas Jammies (made from my
grandma's turtleneck)
Cousins.  They are 3 months apart.


Eowyn got a Fisher Price nativity set-- we are growing our basket of special Advent/Christmas toys, and I love it!
(one funny moment was when I heard her making a "whoo-oo-whoo--oo" noise while playing, and her explanation was "Mary's pumping for Baby Jesus.")



Poppy the Bearded One

Christmas Dinner at Grams & Poppy's (Ryan's parents) down in Canton GA


"Poppy", Ryan & Greg (his older brother) making breakfast the morning after Christmas--
one of Ryan's gifts (really a gift to me & the kids too!) was an all-male breakfast-cooking lesson from the experts!



Possibly my very favorite Christmas picture from this year

Liam opening gifts with Daddy

Opening his gift from Mommy & Daddy

Singing "Happy Birthday" to Jesus-- Eowyn helped bake the cake!!  It was a bit crumbly but tasted amazing!  We joked that it was a birthday crumb-pile, lol.

Friday, December 21, 2012

Mom's Christmas Surprise

The biggest Christmas gift I worked on this year was for my mom.  While she & my dad were off celebrating their Silver Anniversary in Costa Rica...
My sister Nicole & I (with Dad as our financial backer) were re-doing her downstairs back at home.  Yes, my sister lives 5 hours away in NC and we have 3 little ones between us.  We plotted & schemed for weeks leading up to it, organizing babysitters, buying groupons, & planning purchases.  She drove down with her baby girl and stopped at IKEA on the way (so wonderful on a budget!).  Wonderful friends pitched in to help watch our kids (and enjoy Eowyn's dress-up clothes):



Eowyn & I baked dinners & breakfasts-to-go ahead of time:


And we did it!!  We hired a painter to repaint the stairwell & upstairs hallway, we hung a wall of pictures, we framed and arranged family portraits & artwork Mom's "always wanted to hang", bought new furniture (found at TJ Maxx, Craigslist, Marshall's & Hobby Lobby), and many more small tasks.


Mom. Was. Thrilled.






Score for Dad. :)

Tuesday, December 18, 2012

Letters to Liam- 5 Months

I love your new little tucked-lip-smile!
My dear little man-

You've really started to be on the move this month.  It started with rolling over, then you added dragging yourself along, and now you positively army crawl, your arms smacking rhythmically and your toes grasping for purchase on our hardwood floors.  You push yourself to nearly a sitting position, sometimes forgetting to balance and tipping over.  When you smack yourself on the floor or a toy, you show us the Drama King within by screaming with more rage then pain.  However, kisses from Mama quickly make it all better!  You've got the arms of a swimmer and anything you grab (paper is a favorite, and diaper rash cream a new attempt today) goes straight into that adorable little mouth of yours.  Family dinner table with you involves lots of prevention and re-snatching.  You have found your feet and grin at me with extra glee when you grab both socks in your meaty little hands and p-u-l-l.  Such fun!  Your favorite spot is in my arms, though anyone's arms are better than no one's-- yesterday your grandpa GB carried you for much of the evening, remarking "you sure like to be held, don't you?"  Daddy complains that whenever he picks you up, you immediately crane as far over as possible, so as not to miss any view advantage.

Speaking of Daddy, he is definitely your favorite dude.  Mrs. Wendy gave you a cool camo outfit that says "Daddy's sidekick," and that is the truth!  A few nights ago you started crying when he left the room and lit up when he came back for you.  He loves coming into your field of vision because your face erupts in a smile and you begin your "happy flap," kicking and grinning.  You also grin lots for your sister.  All three of us love to elicit chuckles and belly laughs from you, either by playing "peek-a-boo!" or by tickling your little chin or your ribs.  You have the best laugh.

You've begun sleeping pretty consistently through the night from 9ish to 6ish with a dream-feed around midnight on most nights (some nights you skip this and make Mommy VERY happy).  I sing "Be Thou My Vision" to you and this settles you down really well.  You are nursing 90% of the time, with me only giving you a bottle with added probiotics every 3 days or so.  I love this.  You seem to, too.  Your digestion seems to be settling down (yay!) so the bottles are reserved for days when other people watch you... however, lately, you've begun to prefer to just wait until I get home --so far Daddy, Nina and Tia Olga are the only ones you've taken a bottle for!  After all I've gone through to get you to nurse, this is a-o-k with me!

I've let you taste a few things here and there-- kefir, yogurt, pumpkin, banana, egg yolk-- but nothing more than a taste.  For now you are thriving on mama's milk and I am happy to stick with that.  You are very long & lean, wearing 9-12 month clothes for the length.  Anything smaller and your poor little forearms and calves get so cold!  With your gentle hands and good coordination I think Poppy might have his little athlete after all.

You babble so sweetly, and when you get tired complain "daa-dee-daa-dee-de-de-de."  (I think this means Daddy should get up with you at night.)  You chew your fingers, suck a paci to sleep at times (like in church against my chest in your Ergo every Sunday), are fascinated with tags (the taggy ball from Grandma & Grandpa is a hit!) and love to gum Sophie & an iris-root from Switzerland.  You like something against your cheek when you drift off-- like one of your "bo-bos" (burro, puppy or doggy), your taggy blanket, mommy's shirt or your crib bumper.  It's so cute to watch you rub your little eyes or burrow your face into my chest. You have a "pick me up!" paddle you do when you've had enough floor time.  You also are learning "no toques" and have mastered "quieto" (be still).  When instructed not to touch something (like Nina's Chinese vase or the power strip), you stop, look at me, and begin tapping one foot thoughtfully.  Then you either go for it or turn away.  When I turn you around and get you interested in something else, you'll eventually start going back for it, and without fail you stop and look for me, as if to ask "so... can I go eat it now?"  

I love you so dearly, my little boy.  These arms are glad to hold you and I don't think any child could be more kissed.  I pray over you every night, that the Lord would multiply all the love going into you and use you to carry His love to the nations.  You have a heavy responsibility, my son-- to whom much is given, much shall be required, and you are daily given so much.

Praying you learn to run to Jesus very very soon,
--your Mommy


Saturday, December 08, 2012

Why I Ask What I Ask

I just re-read an excellent book, and this quote jumped out at me as capturing so well why I take the time to research rather than take for granted, and then go further by encouraging those around me to research, too.
"Priya never recieved her MMR due to her egg allergies, but otherwise was fully immunized.  After putting her on an elimination diet, she improved greatly.  She started to grow, and to sleep better.  She was happier and more alert. The dietary changes helped her, but her immune system remained hyperactive and hypersensitive, and never fully recovered. Priya died of an anaphylactic reaction to a trace amount of peanut in an egg roll.  I wish I could turn back time.  I wish I knew then what I know now, about the effects of vaccines and heavy metals on a developing immune system.  I sought out the people I thought would help, but I was sent down a path that led to tragedy."
~ Dr. Anju Usman, MD speaking of her daughter in a presentation on nutrient therapy & a biomedical view of ASD.  Quoted in Healing the New Childhood Epidemics, by Dr. Kenneth Bock (MD)
I never want a friend of mine to have to say those words.  If even one family is spared that kind of "I wish I'd known" burden because they looked into something rather than just going with the flow, then all the effort of blogging, posting, reading, talking and writing will be worth it.  In this world we all will suffer; there's no way around it.  But I would far rather have suffering come from something I could not prevent or foresee than through something I brought into my own life, even unknowingly!  Let's always try to go ahead with eyes wide open!!

This is why it's worth it to me to bring up issues like vaccines, water purity, breast-feeding, responsible farming and cheap manufacturing from child slavery.  Yes, it risks offending some because they think I'm judging them (I'm not, I promise.  I'm just asking you to ask some questions for a minute.).  But if the price tag might be higher than you're willing to pay, wouldn't you want to know that up front?  Again, I'm not saying I KNOW the final price tag on any of these or other issues-- my goal isn't to put my own answer out there for everyone to agree with.  My goal is to get the questions, the prayers, the asking started, so that God can guide you, whomever you are reading this, in areas where you might not have thought to even ask for guidance.  In each of these areas (and many more besides), someone else did so for me.

(Dr. Usman, quoted above, had her first 3 children fully vaccinated (minus the MMR for Priya) on schedule and all three of them suffer from many allergies and auto-immune conditions.  She chose to not vaccinate her youngest, and he is free from any such disease.  While this isn't a controlled matched study, it is startling.  I highly recommend the book! And no, Dr. Bock isn't anti-vaccine; he's just leery of the current CDC schedule and certain ingredients in today's vaccines.  He has a suggested vaccination schedule in an appendix of his book.)

Thursday, November 29, 2012

Cleaning What Will Be Dirty Again Tomorrow

I just posted a simple status to Facebook that has sparked some very encouraging conversation... so here it is:

At 9:05 pm, contemplating the food still out, the dishes piled unwashed, the baby crying to be fed, the baby toys scattered, the laundry in the dryer/on the line/in the washer/needing folding (we have a lot of laundry right now)... I quipped: "and now to try and summon the energy to clean what will only get redirty tomorrow..."

This struck a chord, probably with all my fellow home-makers pondering similar tasks at this late hour, with similar energy levels... postponing the inevitable with "one last Facebook peek."  My friend (and former Sunday School teacher!!) Holli replied: "My mom used to say we spend our lives rearranging generations of recycled dirt. She was sure she was sweeping out the same dirt Martha Washington had swept."  Another laughed: "Welcome to the life of a mother :)"  Another, "I've heard it said that cleaning house when there are toddlers around is like trying to brush your teeth while eating Oreos." Yet another posted a quote from Brooke Foss Wescott (1875): "Great thoughts go best with common duties. Whatever, therefore, may be your office, regard it as a fragment of an immeasurable ministry of love", and commented "At least in doing the rote thing over and over, since you do it automatically, you can think greater thoughts than how to do it. I still like hot dishwater and sweeping the floor last thing at night. It's a lot easier without the toddlers, but I miss having those rascals too."

I once heard housekeeping/motherhood described as a "sisyphean task" (Sisyphus being the Greek dude condemned to push the same rock up a hill every day only to have it roll down during the night, until the end of time)... so true.

Isn't pretty much any job like this at some level?  We do the same things over and over, because no matter what we do, it's never enough, or the last word, or the final answer... whether we are counselors, farmers, fishermen, social workers, policemen, teachers, engineers, or bankers.  As Sara Groves puts it:

"Everyone, everywhere, somewhere, somehow, is setting up the pins for knocking 'em down!  
you can find joy in the fertile ground, setting up the pins and knocking em down, [or] 
you can try to fight it till you're anger-drowned, setting up the pins." --"Setting Up the Pins"

My friend Mary mentioned her husband Matt's sermon series through Ecclesiastes. Ecclesiastes is one of my all-time favorite books. Such a great antidote to our overly pie-in-the-sky-leave-the-temporal-behind-and-dwell-only-on-the-spiritual-Reformed tendencies.  I guess I'd call it Redeemed Hopeful Cynicism.  (Yes, I know that's an oxymoron.)  It's hard to think God only cares about your "quiet time" with verses like "Go, eat your bread with joy, and drink your wine with a merry heart, for God has already approved what you do. Let your garments be always white. Let not oil be lacking on your head. Enjoy life with the wife whom you love, all the days of your vain life that he has given you under the sun, because that is your portion in life..."  He cares about everything because it's ALL prayer-- or at least, proof that we aren't praying to the Right God!  I think I will be listening to Matt's sermons as I clean.  :)

I'm just glad that no matter how "unproductive" it seems (because I'm doing it all tomorrow again), I KNOW that it actually doing at least three things:  It is producing greater Christ-likeness in me,  It is fighting the Curse and bringing a little bit more chaos into Beauty (for a few minutes, anyway). And it serves people who will one day (I pray!) be so glorious that I would be tempted to worship them if I met them in my current state (as CS Lewis put it-- there are no ordinary people).  The Sisyphean task of motherhood would surely crush me, were it not for the even greater weight of glory pulling me onward.


But still... it is so tiring. I think that's why I like to do crafts-- at least at the end of my labor there I can hold up a cute dress or quilt or fairy slippers and say "TA DA!"

"my grandmother had a working song
hummed it low all day long
sing for the beauty that's to be found
in setting up the pins for knocking em down"

Hopefully I can remember to sing for the beauty of comforting a congested little soul wanting his mama in about 3 hours... :)
 So Blessed,
-- Christina

Friday, November 09, 2012

Our Saga Through the Land of Sucknswallow (A Quest to Diagnose & Overcome Posterior Tongue/Lip Ties)

Liam at 4 months, Paris, France
I have one child napping and one, well, protesting napping, but at least in his bed, so I hope to get this story up.  I've been postponing it until I had some sort of happy ending... or at least something new.  I have even stopped posting much on Facebook, because who wants to be the one with the perennially depressing statuses?  To those of you who asked how Liam was doing, thank you.  It means so much that you didn't forget about us and our plight, that you cared, that our struggle wasn't "out of sight, out of mind" for you!  And for all of you who wondered and never got around to asking, here you go.  The short answer is that by God's grace and through many efforts, Liam is eating almost normally!  Today I actually had to stop nursing him to correct his sister, and his squeals of protest nearly brought tears of joy to my eyes-- my baby actually wanted to keep eating??  Last Sunday my son's screams actually made it into the sermon he was so loud-- the culprit?  A bottle.  Most moms would have blushed (and I did, a little), but I was on cloud 9 when instead, my son's wails stopped and he fell fast asleep, hungrily nursing.  This is the same kid who it took HOURS to convince to nurse mere weeks ago.  The times, they are a-changing!  (Liam later took that same bottle without any fuss that same day-- I think the little Prince didn't find it warm enough at church.  Poor nursery workers.)

So... where've we been?  Already three friends have had some of their own struggles illuminated and eased after hearing Liam's story, and I know I spent hours searching the web for stories similar to ours in the hopes of getting hints as to Liam's diagnosis, so I type this up in the hopes that it will spare someone else pain down the road.  (I've already posted a brief version with some helpful background images/video here.)

I guess our journey began 10 minutes after Liam was born.  (Well, it could possibly have begun three years earlier, with his sister's birth, but that story isn't done yet.)  Deliciously happy as only a new mom can be, I still noticed that his "latch" was very shallow-- his upper lip was tucked in instead of flanged out like it should have been, and he didn't want to open his mouth much at all.  I pushed down on his chin to help him open wider, and figured he'd learn as he grew.  We didn't have any feeding problems those first few days, when my milk was still thick "liquid gold" colostrum-- his sucking was strong enough to draw it out just fine.  However, I noticed that his latch was always shallow, and he never did seem to untuck his own lip or open up wide enough on his own.

Over-Active Letdown, Foremilk & Acid Reflux Come to Play
Then, about 4 days post-partum, my milk came in.  As with Eowyn, it came in in pints, quarts and gallons.  I felt like I was swimming in it, and poor Liam was trying to figure out how to nurse from a fire hydrant.  (My let down is extremely intense, let's just say.  If I could patent it I could probably sell it to Super-Soaker...) I pumped off as much as I dared, but didn't want to pump too much and risk making the problem worse (since milk supply depends on demand in the end).  My heart sank as I noticed Liam finding nursing more and more difficult, just as Eowyn had.  Signs of acid reflux crept in-- not wanting to be laid on his back, projectile spitting up-- as well as signs that he was taking in too much "foremilk"-- green poop, fussiness, and very rapid weight gain.  Again, way too similar to Eowyn.  I immediately began probiotic drops and worked to reduce my milk supply with block nursing (nursing only on one side for several hours at a time) and with pumping off a few ounces prior to feeding Liam.  I tried cabbage leaves and other herbs to try and reduce my milk supply.  Milk oversupply often leads to acid reflux in babies, so I was zealous to try and help him.

At 12 days old (7/6/12) we took Liam up to NC to be circumcised by a pediatrician/Jewish mohel.  That is a whole 'nother story, but this pediatrician -Dr. Laura Sinai- was on. the. ball.  Not only did she explain to us why Liam was so ruddy (bc we'd delayed cord-clamping, which she applauded), she also asked us if we knew he had a tongue tie.  A light-bulb went off in my head, and my answer was "No, but that explains a lot!" I remember when she told me to try nursing him to comfort him after the circumcision and me thinking "once again, nursing does not comfort my baby." So by this point nursing was already becoming difficult for both baby & mom.  I called the lactation consultants at Greenville Memorial Hospital, and based on what I was saying she recommended that I see my family doctor/pediatrician to get a referral to an Ear Nose & Throat (ENT) specialist to have the tie clipped.  Tongue ties are simple to diagnose and simpler to treat, was the impression I got. The next day we saw our family doctor and the Era of Questions began.  He didn't see a tongue-tie.  Liam demonstrated his ability to stick out his tongue beautifully, and the scales registered him as 10 lbs 14 oz, so he seemed to be eating just fine.  Ok... maybe Dr. Sinai was mistaken?  Maybe all the issues stem from my oversupply?  By this point I was beginning to have a fair amount of pain when Liam nursed, and I didn't know why.  Liam was also fussing at the breast, and clicking with every suck, which I knew wasn't normal.  His latch was still shallow and milk often dribbled out of his mouth when he ate.  I posted to FB on July 9th "he has NO problem gaining weight, but he gets really frustrated eating with my super-fast let down. He doesn't even suckle sometimes, just lets the milk run into his mouth, lol. Thanks for praying-- I hate to cause him more pain... but if he's getting frustrated while nursing instead of being comforted, that's a lot of "pain" for him, too."

"Your Baby's Fine, Honey"
Wanting another opinion, I called the hospital and got an appointment with the lactation consultants there.  I ended up waiting a good deal past my appointment time and while waiting my milk let down.  This meant that by the time Liam did nurse (with the consultant watching), it was a better feeding than most.  Weighing him before and after showed him taking in 1 tsp less than 4 oz in 6 minutes, leading the nurse to exclaim "that's what we call a vacuum cleaner!"  By the end of the visit he weighed 11 lbs 1 1/2 oz, and both LCs assured me that they didn't see a tie, that I should cancel my ENT appointment, and that all problems with Liam's seal, etc, were just him trying to protect himself from my forceful letdown & oversupply.  I was told that my pain should resolve by 6 weeks or so, and that I should keep expressing before nursing him so the letdown wasn't so forceful to him.  Nursing was the best way to stretch his frenulum if it was a bit tight.

While every mom wants to hear that her baby is perfect, something didn't sit right with me.  Another month of pain?  And if the problem was my milk oversupply/OALD, why had his latch been so shallow at birth?  Why was he clicking with every swallow, even when the flow was slow at the end of a feeding?  To make matters worse, Liam was now choking/aspirating milk, and he was still regularly projectile vomiting impressive amounts of milk.  My pain was worsening, not improving.  Many friends--I particularly remember my sister-in-law-- told me to go with my maternal instinct, to not let anyone convince me I was crazy, and to not rest until I got answers.  So I called every "lead" I could find-- a friend's mom who was an LC, a pediatric dentist, the lactation consultants at another hospital, a friend who is a speech-language pathologist, friends whose children also had ties.  The overwhelming impression I got was that IF this was a tongue-tie, clipping (or cauterizing or lasering) it would be the best solution for all involved.  But we still didn't know if that was what it was.

"Hey, There MIGHT be Something Wrong, but No One Around Here's Ever Heard of It"
Dr. Jen Fogle of Ashby Park Pediatric Dentistry gave us our next clue (7/16/12):  "I think this might be a posterior tongue tie, but I've only ever operated on one before, so I'll want a second opinion before I do anything." A posterior tongue tie?  What is THAT?  More research, and I started reading a lot of articles by a pediatric dentist in Albany, NY, named Dr. Larry Kotlow.  In the meantime, I wrote "sigh. still needing wisdom on William's possible to tongue tie. Pediatric dentist today thinks it's a posterior tie (tricky to diagnose), but would want a consult w a specialized lactation consultant then another apt to actually do the procedure. I am not sure whether to keep pursuing the issue or not. I womder if something totally different is going on and I'm just wasting our time and money." Despite this, I made an appointment with an ENT recommended by local LCs as very pro-breastfeeding and very careful.  That visit was a total disappointment.  Though the doctor was kind, he had never heard of a "posterior tongue tie" and said Liam looked anatomically normal.  He counseled me to take Sudafed to partially dry up my milk.  For one thing, Sudafed & I do NOT get along.  For another, this still didn't explain why Liam's latch had been poor since Day 1.  Yet another LC visit, this time at Spartanburg Regional Hospital, at least confirmed that Liam was not "normal."  Though she couldn't tell me what was wrong, she did tell me that he was basically not sucking at all, and that his tongue wasn't moving properly as he suckled.  She measured his intake of liquid and it was around one ounce, which was remarkable, she said, because he hadn't sucked at all-- he was essentially just drinking whatever flowed into his mouth, thanks to my strong let-down... but that same let-down was what drowned him on most every feeding.

For the next few weeks I went around and around in my mind, out loud to Ryan, and even on paper, making lists & charts, praying and wishing someone could at least tell me what was wrong.  Was it pyloric stenosis?  Was yeast/Candida a factor?  What about the fact that Liam sucked his own tongue?  Why did he cringe after yawning widely (was it from reflux?)? Why couldn't he nurse at all lying down?  Did he tend to stick his tongue out to the left?  Why did the skin above his upper lip turn white when he nursed hard?  At what point do we just accept our child's limitations and love him as is?  How far do I keep pursuing answers? 

Following Crumbs, Grasping at Straws
By now it was August and Liam was resisting eating.  His weight gain had plateaued, and while to all outside eyes he was still large for his age, my mother's heart ached to know he was not eating as much as he should, nor was he happy about what he did eat.  I remember we were at the beach and I got a phone call from an old friend, an SLT.  She had never heard of posterior tongue-tie, either, but had researched it and asked her colleagues.  She asked if she could come observe Liam.  YES!!!

Her visit was another "crumb" to follow and gave me support and hope that not only was something wrong, but it could be made right.  It was helpful to hear from her a working theory that might explain most or all of his symptoms. The following is from her notes (for the sake of any mom wondering if your child might have something similar going on):
Slight facial asymmetry w/ L side appearing slightly weaker than right. Able to achieve lip closure at rest.  Tongue w/ slight deviation to L @ rest.
Suck:  Weak latch to finger w/ decreased ability to form tongue groove around finger. (ie tip of tongue more flattened vs. forming a groove or bowl). Tip of tongue did not extend beyond gums when sucking.
Nursing: Mom attempted to flatten nipple to make it easier for him to latch. Audible clicking noted as he attempted to latch. Decreased tongue groove again noted w/ inability to extend tongue beyond gums.  Rapid swallows w/ continued clicking/ inability to fully latch noted when mom’s milk let down.  Mom reports pt. coughs chokes fairly frequently, especially towards the end of the feeding.
Findings: Liam appears to demonstrate reduced range of motion (ROM) in his tongue, both anterior and posterior (forward and back) as well as decreased ability to form a groove to assist in sucking. (This could also be due to decreased ability to move his tongue forward.) It is also likely that he may have a poor posterior tongue to palate seal when initiating a swallow (due to decreased ROM), which can decrease his ability to protect his airway when swallowing. As he becomes more fatigued from attempting to suck, he is more likely to have increased difficulty handling the milk as he attempts to swallow it, which can lead to coughing/ choking.
I posted the question to Facebook friends, desperate for anyone with another hint for me:  "does anyone know of any reason for a poor latch besides tongue tie (of any stripe), overactive letdown, and cleft lip/palate? We've pretty effectively ruled out the last 2 and are stumped about the first. I know for a fact that Liam does not latch properly-- hasn't since the first nursing session at 15 minutes old. I also know he chokes at the ends of most feedings and also tends to aspirate when he spits up. But WHY!???"  I felt deeply the weight of responsibility to care for my son, to make the best decisions and somehow steward our time and money well in the process.  Meanwhile, Liam was not improving, and no one was calling me back.  (I am very UNimpressed with our LCs in Greenville county!)  He refused a bottle because it was too tiring to him-- his suck had deteriorated that much.

At church on August 19th a friend mentioned that her friends back in NC had dealt with something that sounded like Liam's issues.  She thought it might be tongue-tie, and that they might have gone to NY to some doctor up there to have it resolved.  She gave me their name to look up on Facebook, and mentioned that they had a horse farm.  Following up on every lead I got, no matter how small, I searched online for anyone with their name, and sure enough, I tracked down an email on a horse-seller's website.  On the off-chance that this was actually the right address for the right family, I sent an email explaining our situation and asking for help.  With the speed only a mother who'd been in my shoes would have, this kind woman answered me hours later. YES! Three of her children had tongue ties, and YES she knew of some names to give me.  A lactation consultant in NC, a phone call to an ENT she recommended near my sister's in Raleigh, and that afternoon I had an appointment with another ENT for later that week.  In God's providence, I was already planning to stay with my sister that coming week.

Posterior Tongue Tie It Is!
While the second ENT visit didn't prove to be the magic bullet I so hoped it would, he did at least confirm that Liam had a significant posterior tongue tie.  He snipped it with scissors right there in the office, told me to stretch it out 5 times a day, and said I should see improvement soon!  While Liam did start sucking his thumb and drooling-a sign of increased mobility-that day, he went on complete nursing strike.  He absolutely hated the stretching I had to do, and for a while we had a baby who refused both bottle and breast.  My mom and Eowyn started praying, and finally I was able to get him to take a bottle.  I made an appointment with an occupational therapist in Greenville (through my cousin's OT--Kathie Duhon of ATS Kids!), to see if suck training would help Liam.  My college roommate referred me to a Facebook support group for moms of tongue-tied children, and this proved very helpful.  Seriously, it's either the people who have been through it before or who personally know you who care enough to help you through it!  (Yeah, the other people I'd called- repeatedly!- still weren't calling me back...)

The OT confirmed that Liam was very "disorganized" in his sucking.  She watched him refuse to nurse, watched him struggle to get down a bottle, and helped me pick a bottle that worked the best for him.  She told me he had laryngomalacia (floppy larynx) and a mild form of sensory integration disorder-- which is why he slept so dang much and nursed best in the dark/quiet of night. She gave me some exercises to work on his oral defensiveness (his resistance to things touching his mouth), his hyperactive gag reflex, as well as to try and strengthen/organize his suck.  She advised me on which pacifiers might help him practice (the Soothie and gumdrop brands).  And she encouraged me to let him suck his thumb, which he preferred above all else. :)  I bought a pack of NUK baby tooth brushes and started doing therapy with him.  Now I was one of those moms.  A friend of mine whose son basically had all of Liam's symptoms but worse gave me a sensory brush and explained brushing and joint compression.  I added those to my "to-do-daily" list.

A mom on the FB support group gave me the name of a lactation consultant in Georgia who was familiar with posterior ties, and I had a skype consult with her.  She was mostly focused on helping me with Liam's total resistance to eating, and also just offered support.  I mainly fed Liam in his sleep or from a bottle, though sometimes --for no apparent reason-- he'd nurse without a fuss.  Certain positions-- dancer hold, me supporting my own breast, leaning back with Liam sitting up-- did help him latch a bit deeper when he did latch.  He was still clicking, sputtering and choking, and spitting up out his nose at times.  His weight gain was slow, but never dangerously so.  I still had a lot of pain while nursing-- it felt like he was chewing on me, and I also had the deep shooting pain that indicates a yeast infection in the milk ducts, and so far, nothing was touching it (believe me, there is nothing I haven't tried).  The overwhelming consensus I got from the FB support group, and from Liane (my lactation consultant) was that revision with scissors by the ENT I'd seen probably wasn't enough, especially when they saw pictures of Liam's upper lip-- "that lip tie is almost CERTAINLY part of the problem! If the ENT didn't know that, he probably doesn't know what he's doing with PTTs either."  The advice I got from everyone "in the know" was: "Go to Dr. Kotlow." I waited two full weeks to see if there was any change after the scissors revision, but with a sinking heart realized nothing was really improving.
Sept 8th post:  "reeeealy praying that Dr Kotlow in Albany, NY is able to help us (Liam & I fly up & back Tuesday). Liam has a tiny cold that makes eating a nightmare. He panics after sucking a few seconds because he can't breathe well out his nose, which makes his swallowing difficulties quadruple, meaning he refuses to eat even more... which then make him more desperately hungry... with flu season upon us this cannot continue!"
On the plane to Albany NY
Posterior Tongue Tie Revision, Take Two
At this point God sent some guidance in the form of financial provision.  Our health insurance alternative, Samaritan Ministries, assured us that any expenses incurred as we tried to help Liam would be covered 100% as part of our maternity bill.  This meant that if we could get to Albany, NY, the surgery & consultation itself would be completely covered by contributions from other believers around the US.  I checked my frequent flier miles and found that I had enough for a free round-trip ticket to NY!!  On September 11th, I strapped my 2 1/2 month old to my chest and we boarded his first flight.  5 hours to get there, and then we were in a taxi "to see that dentist guy!" as our driver put it.  Dr. Kotlow was old-school, but obviously familiar with kids and very supportive of breast-feeding.  His assessment of Liam was that his PTT needed further revision (since he uses a laser, bleeding isn't an issue like it is with scissors), and his comment when he saw the lip tie was "oh, that's huge."  So much for it not being an issue.  Half an hour later, it was all over, and I was once again being given instructions for after-care and being encouraged to try and nurse him.  God gave me a gift of hope in the taxi back to the airport, though: "back in the Albany airport post-op. Liam just nursed WITHOUT CLICKING in the taxi on the way here. He kept looking at me quizzically, like "something feels weird, Mom?" Praise the Lord for sucessful surgery-- now praying for healing!!"

The Weight of Being a Primary Care Provider
Dr. Kotlow (as well as all the folks on the FB tongue-tie support forum) urged me to pursue regular cranio-sacral therapy (CST) and chiropractic adjustments.  Liam had been adjusted since a week after birth, but I'd never heard of CST before.  Unfortunately, my jet lag-brain-fog meant that I switched his appointment times for OT and CST and he missed both, but I was able to find another therapist in the area who could see Liam the following day (Dr. Kotlow encourages being seen within 48 hours of the surgery).  Dove Pettit was very gentle and easily related to Liam.  She could tell he was still quite "tied up" (scar tissue and muscle/tendon/ligaments still out of whack from being tied for so long) but was able to get him to relax a bit.  By now our little guy was not only resistant to nursing; he also screamed when anything came near his mouth- bottle, medicine dropper, breast. He HATED the stretches I had to do to keep the surgical sites from healing shut (since there were no stitches), and I hated doing them. However, if I didn't do them, I knew I could be back in Albany in another month to do it all over again, back at square one.  Late on Sept 25th, I posted: "well, Eowyn's birthday was a wonderful little mental break... now I'm back to the overwhelming information overload that I must wade through to try and make sure Liam gets all the help he needs... please please pray for me. I am beyond trying to keep my head above water... more like looking for a longer snorkel. Thank you all for all your support and prayers!"

The next month and a half were quite the same:  Liam refusing to nurse except in his sleep or after violent protest, me pumping most of his feedings (and dumping probiotics into what I pumped), me trying to remember to do therapies with him at home (stretching of the frenulae, Beckman oral motor, brushing, joint compression, suck training and techniques to help him overcome his defensiveness and work on his sensory integration), taking Liam to OT, chiropractor & CST appointments, moments of dread and panic when he seemed to worsen (oh no! I've messed up!!) and tentative rejoicing on days when he did better.  Never before did the weight of maternal responsibility sit so heavily on me, and never again do I want to be The One responsible for so many things.  One night two weeks after his revision, Dr. Kotlow called to follow up, and was very concerned when I told him Liam had begun clicking and choking again.  He suspected that I wasn't doing the stretches hard enough or frequently enough.  My stomach sank to my toes-- had I somehow, by omission or commission, undone all the surgery?  Talk about hot guilt!  I videotaped myself stretching him and took pictures, and the doctor relented a bit, saying it looked like I was doing it all right.  I struggled with anger at God-- "I'm doing everything I can, can't you help me a little!?  Why is my son fighting to learn to do the things that other kids, kids with moms who don't even care, do naturally?  I'm trying so hard to be a GOOD mom-- do I deserve all this extra work?!"  Which shows you just how deep-dyed-in-the-wool-Pharisee my heart still tends to be, as if by working hard I could "earn" an easier child.  I'll have to do a separate post about what was helpful encouragement and what wasn't... but the Lord did provide strength, hope, and kindness every day.

His OT was amazed at his progress on the bottle post-surgery, though, saying he didn't seem like the same kid!  A big improvement was that now he took a bottle (AVENT slow-flow nipple) without protest, and his clicking was diminishing.  His reflux was also nearly eliminated-- the probiotics had greatly reduced it, and now the revision seemed to take care of the rest, though he still spits up on the greater side of normal.

The Final Hurdle
By two months post-revision, Liam hadn't changed much from 2 weeks post-revision.  His OT was stumped:  why, since he can suck well now, won't he?  For some reason he still fought breast-feeding like his life depended on it 95% of the time, if he was awake.  5% of the time he did fine, for no apparent reason, and when he nursed while asleep, he was a perfect little champ, though I wasn't able to rely on that every time, either.  He was far less refluxy but still harbored low-level congestion most of the time, and any time a cold or teething came along, feeding got even more difficult.  I refused to think about "next week" or even "next month--" I just tried to feed him this feeding, this day, though in my heart I knew I was holding out until 6 months, when I could try to introduce some solids and maybe get a little break from trying to force liquids into him.  (Though, solids may raise a whole new host of problems, his OT tells me.)  Patting, swaying, dancing, walking all sometimes worked to get him to nurse, but those were hard on my arm and back (by now he was 15-16 lbs).  He usually accepted a bottle but was pretty slow on them. Often he'd make up the missed calories at night, with me nursing him at every stirring.  I went in circles with myself, wondering if I should be "hard mama," not letting him have a bottle at all, but insisting that he nurse, or if it would be better to "let him lead," immediately offering the bottle if he refused the breast.  Neither really "worked."

I wondered --and maybe some of you wonder-- if I should just throw in the towel and resign myself to full-time pumping.  I didn't for several reasons:  partly because bottles weren't always a shoo-in either- he'd often fight them and choke on them too; partly because bottles are so much of a headache, especially when trying to combat yeast-- you have to constantly be sanitizing, refrigerating, warming, etc.  But most importantly because the sucking babies do on a bottle is different than the sucking they do at the breast, and correct sucking plays a huge role in how mouth & jaw structures develop.  The muscles and how they work affect bone shape, which is one reason dentists are strongly encouraging revision of ties (for a while the trend has been to leave them alone as much as possible).  Basically, we should try to correct anomalies instead of accomodate them as much as possible-- usually what is natural is the best way for more reasons than is immediately apparent.  (someday we will figure this out as a culture...)  So of course if and when it was a question of starvation, I did and still gladly do pump for my child!  But I also keep trying to get him to a place where he could do what babies should naturally do:  breast-feed.  As my friend Christa (the SLT) put it, we don't want to make a child run on a broken leg, but we do want to splint and set the leg, let it heal, and THEN teach him to run on it as much as he can.

Since getting teeth, he sucks his thumb far less!
At his last OT appointment (Oct. 30th), the therapist encouraged me to try a nipple shield.  I'd tried one before without any noticeable change, but had lost it.  The idea was that maybe Liam still associated the feeling of the breast with drowning/aspirating/chocking, and since a baby's #1 priority is "protect my airway!" there is no way he was going to choose eating over breathing.  He'd realized that he could handle a bottle by now, but still didn't know he could handle nursing, since he usually nursed in his sleep.  Maybe the nipple shield would help him bridge over to nursing while awake by providing a different, bottle-like, texture.  It would also give him more of a surface to latch onto-- his tongue/mouth muscles & coordination are still weaker than normal-- and would limit the flow of my let-down.  By now my oversupply had largely corrected itself, but the letdown is still quite powerful.

Well, that $6.50 (BabiesRUs price-matched the Amazon price) 2-pack seems to have done the trick.  At first we needed it every feeding, except at night sometimes, but now I haven't used it in 2 days.  I am still in shock.  After four months of struggle and tears, he... eats.  The other day he was hungry and he actually rooted to nurse.  Yes, I know, newborns do that.  But mine had forgotten how to do that.  I now have the luxury of forgetting to do his therapies occasionally.  While Liam's eating is still not perfect-- I often have to correct his latch, there's still a fair amount of sputtering and coughing, he prefers to be moving, he tires and has to be fed in spurts, he wakes up in the night frequently to nurse-- it's so far from what it was.  I am pretty sure he needs another CST session next week because he's been choking again-- this is a sign he's struggling to coordinate sucking & swallowing.  Probably the chiropractor will help too. 

So, in short, here are the things that helped us:  probiotics (reflux & digestion-- poor digestion is a side-effect of tongue tie, since digestive peristalsis starts in the tongue), massage & patting (burping-- since swallowed air is a big problem due to his less-than-perfect seal), baby yoga (when his crying got inconsolable), sleeping on his stomach (laryngomalacia & reflux), lavender essential oil (helped calm his breathing during a really scary diaphramatic spasm), cranio-sacral therapy (both Dove and Carol Ball of CranioSacral Center of the Carolinas), chiropractic care (his hard palate had to be adjusted), occupational therapy, assessment by an SLT, and most of all: diagnosis and revision by laser of his posterior tongue and lip ties.

May our trips and false starts down this path make someone else's journey easier!  And may you also see that God answers prayers.  Just as an example, here's a FB post from Sept 18th:  "Two prayer requests... both for Liam. One, that his passport would make it in time for our trip to Switzerland mid-October (by God's grace we overnighted/expedited it today, but the turn-around time is 2-3 weeks). Two, that God would fully re-release his tongue. His latch is deteriorating and I feel like we are back to square one. I really do not want to have to go back up to Albany, and I know God can release whatever He wants (some kids never require surgery at all). I am fighting discouragement and trying to trust the Lord with him and his little mouth. What a blessing that he's so CUTE!!! :)"  We DID get the passport, and we DIDN'T go back to Albany!!  Thank You, Lord!

EDIT:  another piece of the puzzle for us was a parasite cleanse.  I gave Liam Olive Leaf Extract to see if some of his rash would clear up, knowing that OLE is a gentle but effective antifungal, not knowing it was also a gentle but effective anti-parasitic.  Well my 5 month old passed a flatworm in his diaper.  This was before he ate any food or even crawled.  Overnight his chronic congestion cleared up.

Another puzzle piece was food allergies.  Liam is allergic to onion, nutmeg and potato-- all of which I regularly ate while nursing him.  This undoubtably caused the eczema-like rashes on his cheeks and all over his body (they became very obvious once he started solids; he's also allergic to peach peels and echinacea.), but probably also factored into his reflux & aversions to eating since he did react to it when I ate those foods.

Lastly, we incorporated sensory play intentionally to help him overcome the last residual bits of his sensory aversion (he hated water, including baths, sand and anything textured-- grass, beans, rice, etc.).  We did bean boxes, sand play, and water play-- a water table (gift for his 1st birthday) was an excellent therapy tool-- also used an electric toothbrush.

EDIT TWO:  I nursed Liam for 2 years 3 months.  For a good year after he accepted the breast his latch still "pinched" and was not totally comfortable-- I usually had indentations from his top two teeth after every feeding, especially on my right side.  However he LOVED nursing ("che-che") and I loved being able to nurture him like that, and was so thankful for the extra protection through toddler colds & illnesses, through potty training and tantruming.  My milk was still plentiful too; it wasn't until 18 months that his solid intake began to match his milk intake!  (I was also able to pump and give milk to mamas with many babies needing a little extra milk!)  The last six-ish months of our nursing journey Liam was able to understand what I meant about not biting down on Mommy, and would correct his latch when prompted.  Nursing was pain-free and so wonderful for both of us.  Our story had its ups & downs, and I would DEFINITELY characterize it as a SUCCESS.  William is a poster child for the benefits of breastfeeding; healthy, energetic, agile, extremely verbal, loving, well-bonded to both parents, smart, with beautiful teeth and facial bones.  PRAISE GOD!!

Wednesday, October 31, 2012

Halloween, All Hallow's Eve (All Saints Day), and Reformation Day

Liam is always so observant!
Happy Halloween, All Hallow's Eve, and Reformation Day!! We're still not sure what exactly our family take on this cultural, church & historical holiday will be, but it will be a lot of fun... and will probably be a combo of all three.  Whatever we decide, we want to celebrate the day on purpose-- in a way that is distinctly Christ-honoring and distinctly Szrama! :)  We want to enjoy a fun American tradition as well as use it as a chance to reach out to our neighbors and bless them.  We definitely want to be DIFFERENT than "the world" but that comes out most of all in our attitudes, character, and treatment of others.  "By this all men will know that you are My disciples, that your houses remain dark on Halloween..." oh wait, I mean, "by your love for one another."  Christians definitely have a whole spectrum of takes on this particular holiday, and as long as each practices their conviction in love and not fear, they can do so in a way that honors the Lord.

Some articles I've been reading and thinking through...

-- from the intentional avoidance perspective, by Dr. Albert Mohler (president of the Southern Baptist Theological Seminary)
-- from the exuberant celebration of Reformation Day/selective Halloween perspective, by Douglas Wilson (pastor & author, and one of our favorite religious/political/social commentary bloggers)
-- from the redeeming Halloween as a cultural and church holiday, by Jason Gray (Christian singer-songwriter & Rabbit Room member)
-- from the observation of the church holiday All Saints Day (All Hallow's Eve =Halloween) perspective, from the American Vision group

I really appreciate how that last article ties together the three simultaneous events:  Reformation Day, All Saints Day and Halloween in this way:
"Thus, the defeat of evil and of demonic powers is associated with Halloween. For this reason, Martin Luther posted his 95 challenges to the wicked practices of the Church to the bulletin board on the door of the Wittenberg chapel on Halloween. He picked his day with care, and ever since Halloween has also been Reformation Day."




Wednesday, October 24, 2012

Switzerland, Day 3: Checking out Schwyz

Today, Ryan & I went our gender-separate ways.  He & our host, Christophe, headed to work and a Drupal meet-up. Christophe owns a business and has been a user of the Drupal software Ryan writes since the beginning.  He thinks he was the FIRST user of Ubercart in Europe, and met Ryan at DrupalCon Barcelona... which we attended as newlyweds 5 years ago.  [I just went back and dredged up blog posts from that trip, for anyone wanting a throwback: "Hola de Catalunya," "Thoughts on Picasso," "Ryan's First European Meal" and "I Got my Paella!"  Fun times!]  ANYWAY... Ryan was gone all day.

Super-old Door in the Bethlehem House
Sabina offered herself as tour guide around, and to take me wherever I wanted to go.  I slept in a bit, tried to get Liam to eat, sent out postcards through this nifty little site, and we had lunch at home before venturing forth into the fog & chill.  The drive to Schwyz (capital of the canton Schwyz) was unwordly and a bit creepy-- the fog went all the way to the ground and was so thick that nothing was visible until BOOM! It was at arm's length.  I've read descriptions of objects "rising from the mist" and that was exactly what it looked like.  Anyway, I enjoyed the old city center, with its cobble stones, street-level shops with family dwellings leaning over the eaves, chapel spires, church bells and clock chimes.  We toured the oldest wooden house in Europe:  the Bethlehem House, built in 1287--it's as old as Notre Dame and predates Switzerland as a nation, as well as the later family mansion known as the Ital Reding House.  Both belonged to the Reding family, whose austere portraits we scrutinized in the 2 floors we could see of the 6.  Sabina is so easy to talk to and very considerate and helpful.  The perfect hostess and a wonderful tour guide!  She explained several aspects of the houses to me, as there were no tour guides-- I couldn't believe it when they unlocked the houses for us and turned us loose!

Oven in typical green tile
I was suddenly famished as only someone eating for 2 (haha or more, in my case) can be, so we walked through the downtown again for my first Swiss supermarket experience.  Don't worry, female friends:  I am bringing you back PLENTY of chocolate.  Also the biggest Toblerone I've ever seen (600 g) and sweet chestnut paste, which is a wonderful crepe topping.  Swiss chocolates are just amazing, and their combinations are superb:  my new favorite is milk chocolate with raisins & almonds (with NO plastins and NO vanillin, take THAT Hershey!!).  Honey is another popular filling.

Our last stop was the Swiss Army Knife factory store, where I picked up several Christmas gifts at a great price.  They have knives with EVERYTHING on them-- Sabina and I laughed that you don't even need to open them to use them as a deadly weapon-- just hold them like a rock and bash someone over the head with it!  We actually had a running joke about all the things we could use as weapons, starting with a truly hefty candlestick in the Reding House.  I had an "Aha!" moment which led me to explain the game "Clue," which as you probably knows, lists "candlestick" as a possible murder weapon. Anyway, I also was tickled at the Swiss Army PERFUME lines!  A sniff proved that it was not Eau de Sweaty Boy.  I'm pretty sure no army smells like anything anyone would WANT to exude.

Dinner was me, & Sabina, and the 4 teenaged young men living in her house.  It was great.  Amazing salad, shepherd's pie, songs sung in canons in several languages, and jokes, lots of jokes-- all of the knock-knock, pun, blonde (or Austrian), or "Your Mama" variety.  The Gallis are raising some stellar boys and are a great inspiration to Ryan & I with our little man (hopefully men someday =D).

Enjoy these pics of the Bethlehem House:

Fish Font- obviously these folks weren't strapped for cash

The ceiling was WAY low-- I could stand up straight in the rooms but not through the doors

Original Stone Sink (drains straight to the outside)

Cast-iron Skillets

Can you imagine learning to walk on this floor? 

Cloth bag filled with cherry-pits that were warmed in the tile oven and then taken to warm the beds.  Sabina remembers using some like these as a child!

And these from the Ital Reding House:
The Deluxe Version tile oven, with paintings representing each canton.  This one is for Schwyz.

Dining room with gorgeous paneled ceiling!
Can't believe our time here is almost over!
-Christina