|Liam at 4 months, Paris, France|
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.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.
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.
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|
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!|
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!