My kids were born with obstructive sleep apnea

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Before I was a childbirth educator, I was a mom of a little girl. I’ve written about her birth before; I haven’t really ever thought to talk about how both of my kids were born with sleep apnea, and how it took forever to find a pediatrician who would actually believe me.

When I first brought her home from the hospital, I noticed almost immediately that my baby girl would regularly stop breathing for a couple of seconds, only to gasp for air. Initially, my new mama instinct wasn’t sure if I was just being overly paranoid, or if she really did stop breathing for a couple of seconds before the big gasps I didn’t think were normal. Her Mayo Clinic doctor (who was a total and complete ass, BTW), ignored my concerns– he told me she was just congested, and moved on to something else.

(As an aside, I should tell you some day about the nonsense “parenting education” material they would give me every visit. Knowing what I know now, there was very little actual evidence behind it. All it did was foster doubt an insecurity by creating parenting expectations that would never be biologically normal. Even better, if I could find the sheets, it’d be a total hoot to go through it with a big red marker!)

When my daughter was about 4 weeks old, after sleepless nights and too many days nodding off during the day while I fed her on the couch, a friend encouraged me to look into safe bedsharing. I found the safety guidelines online, and during one nap time, I latched her on while in the side-lying position in my bed, and we both fell asleep for a life-changing 2 hours. I was a convert from then on out. It wasn’t until much later that I realized that since she and I started sharing a safe sleep surface, I no longer noticed that she would stop breathing. Instead of sleeping next to me in her bassinet on her back (which, until very recently, was the only AAP-sanctioned sleep scenario), she spent her nights cuddled up next to me, on her side. Sometimes I’d wake up and find out that I’d been feeding her without remembering when or how the feeding started. And then, when she was 9 months old or so, she started to turn sideways in the middle of the night and stretch out as much as she possibly could. That’s when we transitioned her to a crib in her own room. And at 9 months, she would sleep in whatever position she felt like sleeping in that night. By that point, she was not only rolling and crawling, but walking on her own, too. SIDS and back-to-sleep stuff was no longer technically an issue for her.

However– she was back having very, very audible sleep apnea. We’d listen to what I now understand was the sound made when her tongue would fall into the back of her mouth, then the little “kuh” sound she’d make right before the gasp as she started breathing again. We’d joke in a moribund manner that the gasp at least told us she was breathing…eventually. Moreover, we’d started to notice that when she slept, she always slept on her stomach or he side with her head tilted back to straighten and open her airway.

When she was 2 years old–maybe?– we brought it up again with her doctor. Keep in mind, smart phones weren’t a thing yet. iPods were big and bulky and only had hard drives and were only for music. We could really only convey what we were noticing by trying to recreate it ourselves. Her family med doc was again dismissive, though he did say he could refer us for a pediatric sleep study, but that it would take 6 months before we’d be able to get in. Shortly after that, our basement flooded, my husband got a new job that required him to commute 90 minutes each way, and then I got pregnant with her little brother… and life got super chaotic.

Once my son was born, bedsharing was started from day 1. However, he didn’t really nap on his own until he was about 8 months old, and when he did, he’d do what his sister did– he’d stop breathing. As he neared the 9 month mark, when I would put them both down for a nap in the same room, I’d listen to the baby monitor as they took turns having apnea episodes (which I’m sure did NOT help my anxiety). I can’t remember if it was at a well baby visit for him or a well child visit for her, but I mentioned the apnea episodes their pediatrician, who referred us to a pediatric ENT. She got her tonsils out shortly after her 4th birthday. At that point, they had grown so large that she barely had any room to breathe while she slept. A few days after the tonsillectomy, we noticed that when she slept–there was silence.

My son had his tonsils and adenoid out when he was 3 years old. He was also able to breathe perfectly while sleeping a couple days after surgery.

So there you go. My kids had obstructive sleep apnea, and now they don’t. I do think that both of them had and have tongue ties for a BUNCH of reasons. I had recurrent mastitis, nursing was super painful at first with my daughter, she didn’t gain weight all that fast, both kids had EPIC spit-ups. One child had speech issues that have been resolved. The other one tongue-thrusts to swallow and is very sensitive to food texture.I often wonder if I had had them sleeping on their own in a room from day 1, on their backs and not near me–would we have had a different outcome? We know (and the AAP recognizes this) that babies NEED to sleep in close range to their parents for at least the first 9 months, in part to help them regulate their breathing. When humans sleep on their backs, the tongue can fall to the back of the mouth, causing snoring and apnea.

Finally, I do want parents to know that if your little one stops breathing and then gasps for air, that is NOT NORMAL. If they sleep with their head always tilted back—again, not normal. Listen to your gut, and if your child’s care provider dismisses you–get a second opinion. Or a third. I know that there’s so much more to learn about this, SIDS, and other sleep issues, but I do think that parents can go a long way if we share our stories and compare notes.

On that note, Happy New Year!

Warmly,

Veronica

 

Veronica Jacobsen, BA, CLC, CPST, LCCE, FACCE
Birth Doula, Certified Lactation Counselor, Child Passenger Safety Technician, Lamaze Certified Childbirth Educator, Fellow of the Academy of Certified Childbirth Educators

Opening BabyLove in September of 2011 has allowed me to build a space where all families can come to get good information in a caring, welcoming environment. I have found that not only do I love teaching more than ever, but I also really love running a business. Hopefully my passion for every aspect of BabyLove shines through.
I live in Richfield with my husband, and I am a mother of a two great children. When I can steal a few free moments, I love to go on adventures with my family, cook, garden, thrift, can, and craft.

Signs of Tethered Oral Tissues in Teeth (AKA Tongue Ties and Lip Ties)

adult tongue and lip tie

I’ve had the idea for this blog post in my head for awhile. I thought it was about time to explain what I have had medical and dental experts show me and tell me about signs of tethered oral tissues. Knowing what these things look like and why they exist has been…interesting. I instantly can scan a person’s face and get a pretty good idea of what’s going on behind their lips and under their tongues. Bizarre, I know.

First of all, yes, I had braces as a teenager, so even with major interventions, my teeth are still having these issues because of the forces that the tethered oral tissues place on them. So, with the photos above as examples, here’s what I’m talking about:

1) Gap in front teeth- This one is pretty obvious, but I don’t have a picture of it because a) My gap is being held together by bars and b) I broke the upper lip tissue at some point when I was little and it no longer goes down as far as it used to. A gap in the front teeth is not normal. It is possible to remove the extra tissue on the top lip and between the front teeth and to get the teeth to grow together. How do I know? My daughter’s front teeth are perfectly together now.

2) Receding gumlines- I apologize to Periodontists in advance, but oral tethers in the lower lip and cheek will lead to gum recession. Some people even need to have very painful gum surgery to help prevent bad, bad things from happening to their teeth. Those little pieces of tissue pull on the gums, and over time the tissue can recede.

3) Crease above lip when smiling- When someone has a tongue tie and has difficulties swallowing, they have to tongue-thrust to be able to swallow. Want to see a baby have to tongue-thrust to swallow?

Over time, this leads to an overbite. (I think. Is that an overbite that I have?) Anyway, I think that when the teeth get pushed outward over time, when someone who has to tongue-thrust to swallow smiles, their lip slides too far up, and the angle of the teeth causes the lip to crease. That’s my theory anyway.

4) Front teeth being pulled inward- This is something that I see on adults as well as kids; in children, the teeth can be pulled inward quite dramatically. If I had been perfect about wearing a retainer over the last 20 years, maybe my bottom teeth wouldn’t be getting pulled inward, but the force of the tether under my tongue did affect the teeth. I’ve seen people with very tight restrictions under their tongues have very, very crooked front teeth.

There are also things that are very evident with tongues when there is a tongue tie/ tethered oral tissues. However, my tongue is not a good example, so a later post will cover that info.

Warmly,

Veronica

Disclaimer: This post is for educational purposes only. I am an educator, so this information is from research, discussion with other professionals, and personal observations. This information is not meant to diagnose or treat any conditions. 

Veronica Jacobsen, BA, CLC, CPST, LCCE, FACCE
Birth Doula, Certified Lactation Counselor, Child Passenger Safety Technician, Lamaze Certified Childbirth Educator, Fellow of the Academy of Certified Childbirth Educators

Opening BabyLove in September of 2011 has allowed me to build a space where all families can come to get good information in a caring, welcoming environment. I have found that not only do I love teaching more than ever, but I also really love running a business. Hopefully my passion for every aspect of BabyLove shines through.
I live in Richfield with my husband, and I am a mother of a two great children. When I can steal a few free moments, I love to go on adventures with my family, cook, garden, thrift, can, and craft.

Refresh Wednesday: Adult Tongue Tie Revision

Hands down, the most viewed post I’ve ever written was 5 Changes After My Frenectomy. I also wrote an update after my 2nd revision. So, for this Refresh Wednesday, I am going to pull the two pieces together, along with a couple of previously unpublished pictures.

One thing I really want to emphasize is that I am hearing more and more from older medical professionals about how babies were treated for tongue ties within moments of being born. This was standard practice, people. Routine, unquestioned, and normal. 

Anyway. Check out the full story of my tongue tie release:

“5 Changes After My Frenectomy” Originally published November 25th, 2014

Well, last week I got really brave and took the plunge: I finally was able to find a dentist who was willing to take me on as a test case to have my tongue tie released. I’ve read only the tiniest of handful of accounts from adults who had revisions, so I wanted to share with you some things that I’ve noticed one week out. PLEASE NOTE: Since I was a test case, it turned out that I had a lot to release, so we know I need more revision. 30-something-year-old tongues turn out to be a little bit more apt to bleed. It was done bleeding within 5 minutes, but I’ll be going back for more revision once this heals.

First, a bit of background: I’ve been told I was a very colicky baby for the first 4 months of my life. My mother swears it only got better when I got put on some antibiotics, but I was also having weight-gain issues. I wasn’t really gaining weight at all. I looked like a tiny, translucent bird in all of my pictures. But God bless my mother, she didn’t give up on breastfeeding. She did the best she could.

I have a wire that has been holding my front two teeth together since I got my braces off as a teenager. At some point, I did otherwise break my lip tie, but the tissue between the front teeth is thick enough that there would be a gap there if left unwired. I haven’t gone back to look at pictures from childhood to see if I can detect a lip tie. And, as we often say, almost always is there a tongue tie when there is a lip tie. And my tongue (especially now that I’m 30-something) had a VERY thick frenulum.

Just one aside: I’ve been a little stunned to see the turn that the conversation has taken in recent months on the issue of tongue ties. Specifically, there have been some very vitriolic conversations online by lactation professionals that have taken on tones of blaming parents for MAKING tongue ties an issue. I’ve seen the phrase “parents want the easy fix” pop up over and over again. I’ve read as IBCLCs INSIST that the parents just didn’t try hard enough to work with a lactation consultant on positioning and latch. Unfortunately, some of these IBCLCs have built up a wide audience, and their views can be their views, but what I keep pointing out (and it keeps falling on deaf ears), is that parents don’t get to the tongue tie conclusion easily. Some may, if they are lucky enough to give birth in a hospital with an educated pediatrician who routinely revises tongue ties. Beyond that, by the time I see families join my group, they are at a point of crisis. Real, real crisis. Telling moms they need to “try harder” and see ANOTHER lactation consultant (when often they’ve seen 2-3, or when there literally isn’t one for miles and miles around) is mean at best and unethical at worst (if a care provider can’t provide appropriate care, they are under an ethical obligation to refer to a provider who can.) I was VERY tempted to screen shot some of the very negative posts that I was reading last week and every time they ranted about tongue ties, I would replace the mentions with the phrase “Artificial Baby Milk”; the results would be interesting. (As in: “Parents who are too lazy to work with a lactation consultant look at tongue ties Artificial Baby Milk as the easy fix.” See what I did there?)

Anyway.

Here are the 5 things I’ve noticed in the last 7 days after my release:

1) The tension headaches are largely gone- If you’ve seen my video on how everything in the head is connected, you’d know that the muscles around the skull can hold a lot of tension as a result of having a tongue tightly tethered to the bottom of the mouth. I did go in for some body work with my favorite chiro right after the revision to help release the tension, and it has largely stayed away (well, until yesterday, when I had a train wreck of a day, but I’m already feeling better.)

2) I don’t carry my tension in my shoulders day in and day out- I’ve had so many massages, so many adjustments through the years, and I’ve never had any luck eliminating the tension in my shoulders for more than an hour or two. Well, now I feel like I can. Muscle memory is strong, so I have to be very conscious of my shoulders, but it’s easy to get them to relax when I try.

3) My jaw doesn’t click- OK, so this did take a couple of adjustments to get addressed, but as of now, my jaw is, for the first time ever, click-free and EVEN. I have to imagine I had this same jaw issue when I was born–and I’m pretty sure, even with the perfect latch, my jaw movement would have made it difficult to transfer milk.

4) My tongue sits on the roof of my mouth- Again, I’m still retraining myself to do this, but I can actually keep my tongue where it belongs, whereas before my tongue rested on the back of my teeth and pushed outward on them, essentially ruining the thousands of dollars paid to correct my overbite.

5) My Eustachian tubes moved- Seriously. I felt them move upward over the weekend. Not only that, but I felt them clear out, like they could drain finally. Like EVERYTHING else, it wasn’t until things had changed that I could notice how much of an impact this all made on my body.

Other adults have reported changes in their gaits, posture, and even improved thyroid function.  Time will tell if I see some of those improvements, too. It would have been nice to have this fixed as a baby, but….we all do the best we can with what we have at the time.

tongue tie release result

“Adult Tongue Tie Release Redux” Originally published December 10th, 2014.

So, today I went back for a check in and follow up on my tongue tie revision. I’ve found it really interesting to go through this entire experience. It’s brought me worlds of understanding about what babies and kids are probably going through. I’ve also noticed additional physical changes since my last post. I’ve also had some thoughts about tongue ties that aren’t proven, but I think connect some dots about things we already knew about.

First of all, this is what my tongue looked like this morning:

photo of tongue tie

Notice something that we didn’t see before? There are three attachments that you didn’t see before. As my tongue healed, they became more and more noticeable. Also, starting at the end of last week (2 1/2 weeks after the initial revision), I started to feel the tension that I had before, but on the right side of my body. It’s also interesting to note that the attachment on the right side of my tongue was the least prominent of the 3. I had severe scalp pain on Sunday. too.

There are a few things I’ve observed that I really want parents AND providers to know about:

  • First of all, these additional attachments came forward on their own as my body resettled and all of my bones and muscles shifted post-revision. So if you see attachments after a revision is healed, do not assume the professional who did the revision didn’t do a complete job. Furthermore, professionals who do revisions SHOULD do additional revisions at no extra fee, or figure out a way to make such an arrangement work.
  • There was some tissue that did almost look like it reattached, but that tissue did not affect the function of my tongue.
  • As the new attachments came forward, especially the center attachment, stretching my tongue became painful. It was very clear that this was tissue that had never been stretched like that before.
  • Post-revision body work is essential. I’ve been going in for adjustments to my head and shoulders (knees and toes) right after the revisions and then even a couple of times in between the revisions. Don’t skip this!
  • The pain afterwards has been manageable. Eating hasn’t been too bad. However, if your baby was revised and you’re breastfeeding, keep your baby skin to skin a lot that first day and nurse a lot. Breastfeeding reduces pain.
  • In addition to the stretches, rinsing with salt water and applying coconut oil to the underside of my tongue has been really helpful in the healing process.

I’ll follow up in a couple of days with additional thoughts that I have as things heal from this last revision. In the meantime, I leave you with this thought:

Tongue ties have been revised for hundreds if not thousands of years. There is already some really interesting research that’s starting to point towards the short term and long term impact of revision (or not revising).  However…there are some assumptions that are being made that really need to stop. No, Cranial Sacral Therapy isn’t the only way to do bodywork prior to and after revision, just like not assuming ENTs or any other discipline know how to properly assess what we see. Also, I like being able to measure things just as much as the next person, but I’d strongly caution anyone who wants to ONLY revise according to very rigid standards. There can be a lot of different ways these ties can exist. As I keep saying over and over, providers need to listen to parents and be willing to learn from them and each other. I’ve learned SO MUCH just by talking to parents, kids, and other adults, and some of my biggest revelations have come from consulting with other specialties. I encourage others to do the same.

New Pictures!

final tongue tie

 

Veronica Jacobsen, BA, CLC, CPST, LCCE, FACCE
Birth Doula, Certified Lactation Counselor, Child Passenger Safety Technician, Lamaze Certified Childbirth Educator, Fellow of the Academy of Certified Childbirth Educators

Opening BabyLove in September of 2011 has allowed me to build a space where all families can come to get good information in a caring, welcoming environment. I have found that not only do I love teaching more than ever, but I also really love running a business. Hopefully my passion for every aspect of BabyLove shines through.
I live in Richfield with my husband, and I am a mother of a two great children. When I can steal a few free moments, I love to go on adventures with my family, cook, garden, thrift, can, and craft.

3 Things the Tongue Tie Skeptics Get Wrong

I’ve been writing about tongue ties and lip ties for a couple of years, and have been involved in some grassroots efforts to expand awareness and access to providers. Things had been going at a slow, yet calm pace until….until the skeptics and adversaries started speaking up. The first time this really hit our radar, I think, was this blog post from Nancy Mohrbacher. Now, I have a lot of respect for Ms. Mohrbacher, but I think there are a few things that were misleading in her portrayal of the issues. Reaction to her post was swift and divisive. Interestingly enough, comments on her post were removed and the ability to comment was turned off. Other posts have surfaced, but it was this post that prompted me to clarify a few things.

Myth #1: ______ are diagnosing tongue ties and lip ties

From Nancy Mohrbacher’s post:

I appreciate the growing awareness of tongue- and lip-tie issues and health providers willing to do interventions. Yet often the diagnosis is coming from friends, Dr. Google, and Facebook discussions.

OK, so major point of clarification: Medical Doctors can diagnose. Chiropractors (in some states) can diagnose. Advance Practice Nurses can diagnose. Physician Assistants can diagnose. Dentists can diagnose. Unless they hold any of these other licenses, guess who can’t diagnose?

IBCLCs (unless they are also MDs, DOs, etc.) can not diagnose. The internet isn’t diagnosing. Friends aren’t diagnosing. Facebook groups aren’t diagnosing. Once a parent is referred by whatever source to a provider who can do frenectomies, that provider then can diagnose and treat. Period. So let’s stop saying otherwise, OK? Thanks.

Myth #2: Moms aren’t getting help from IBCLCs before wondering if tongue ties or lip ties are an issue

In the 2nd blog post I referenced above, “Revise the Ties, Keep the LC,” she lays out 7 reasons why IBCLCs need to be involved with sorting out breastfeeding issues. I don’t think anyone disagrees with this at face value. But what isn’t really addressed is, if you read many accounts written by moms who have ended up getting frenectomies done on their little ones, most of the time at least one IBCLC, if not 3 or 4, have been involved with working with a mom. And while the author gives the advice that,

Every lactation consultant is an expert on breastfeeding, but not every lactation consultant is an expert on tethered oral tissues, structural issues as they affect breastfeeding,  and recovery after frenectomy.  Many of us have invested considerable amounts of time and money to acquire knowledge and information that is more advanced than the basic training required by the International Board of Lactation Consultant Examiners (the certifying board for IBCLC’s).  If you are not sure whether the lactation consultant you have contacted is an expert in this area, just ask.  Ask if they are knowledgeable on complete tongue function, if they have a good working relationship with local providers that release tongue/lip ties.

I can say, in my year and a half of advocacy work, this is hard for me, someone not even in crisis mode with a tiny, hungry baby, to figure out. How on earth are new moms supposed to suss all of this out? They get told that an IBCLC is the person to see for help with breastfeeding, and when they don’t get that help from the IBCLC that actually helps….I don’t know what to say to them.

Myth #3: This issue only affects breastfeeding

There are lots of studies that exist that show links to tongue ties and lip ties and things like sleep apnea, TMJ, speech issues, torticollis, overbites, crowded teeth, etc. (And of course, as I type this, PubMed isn’t working.) You can find lots and lots of info on these various issues over on Dr. Ghareti, ENT’s blog, including a link to the video interview I did with him a year ago. Since teeth, speech, etc are so easily affected, that’s often why dentists are more likely to be receptive to diagnosing and treating lip ties and tongue ties than other providers.

I do realize this is an evolving issue, but it’s easier to have a conversation as professionals if you at least keep the three points I made in mind. It’s easily to vilify, oversimplify, and misrepresent the issue, but that’s not fair to anyone. We’ll all do much better if the dialogue is respectful, open, and there’s no more name calling.

Warmly,

Veronica

 

Veronica Jacobsen, BA, CLC, CPST, LCCE, FACCE
Birth Doula, Certified Lactation Counselor, Child Passenger Safety Technician, Lamaze Certified Childbirth Educator, Fellow of the Academy of Certified Childbirth Educators

Opening BabyLove in September of 2011 has allowed me to build a space where all families can come to get good information in a caring, welcoming environment. I have found that not only do I love teaching more than ever, but I also really love running a business. Hopefully my passion for every aspect of BabyLove shines through.
I live in Richfield with my husband, and I am a mother of a two great children. When I can steal a few free moments, I love to go on adventures with my family, cook, garden, thrift, can, and craft.

Guest Post: From a Mommy Dentist: The challenge of breastfeeding tongue-tied babies

Today I’m going to share, with permission, a post that Dr. Kristen Berning wrote for her dental practice’s blog. As the admin for Tongue and Lip Tie Minnesota Facebook group, I see story after story after story from moms that have many of the same themes that Dr. Berning’s does. In the last year, there has been some very forceful pushback from Lactation professionals, pediatricians, dentists, etc. against addressing tongue ties. Quite frankly, some of the discussions I’ve seen via blogs or social media are very negative about moms who are looking for help on this issue. I’m hoping to share other stories from moms over the next few weeks to help get the word out about what it’s like to be the parent who has to advocate for help. If you have your own story you’d like me to share, email me at veronica@babylovemn.com.

Like many new moms, I thought breastfeeding would come naturally.

When my third baby, Ted, was born, I already had 2 years cumulative experience breastfeeding my other children.   I planned to exclusively breastfed Ted for at least 12 months.

When Ted was just one day old in the hospital, I knew something was different with breastfeeding.  I felt he was “chewing” instead of “sucking.”  The lactation consultants worked with me on encouraging a deeper latch:

tongue tied baby

  • I was told to use my finger to encourage him to stick his tongue out further.  But he couldn’t stick his tongue out very far.
  • I would wait for a wide opening before letting him latch.  But he didn’t open very wide.
  • I was told to use a nipple shield.  But that made the pain even worse since he was still “chewing,” and the plastic was pinching me where I had open cuts.
  • When his latch was shallow, I was told to break suction and try again to relatch.  But the latch-on was the worst part and I didn’t want to restart the feeding.  I just wanted to get it over with.  The toe-curling pain brought me to tears and I dreaded the next feeding.

I had cracked and bleeding nipples.  The lanolin and gel soothies weren’t helping enough.  I attended the breastfeeding support group when he was 3 weeks old and discussed the pain with the lactation consultants.   I was sitting near a sweet mom named Jessi.  Jessi suggested Ted might have a tongue-tie, as she experienced it with her daughter and had it clipped by an ENT physician.   The lactation consultants took a look at his tongue, but were not sure.  At Ted’s 3-week well child appointment, his pediatrician was also not sure.

I made a phone call and the ENT could not see Ted until the next week.

The next night, I felt shooting pains in my chest in between feedings.  With one arm clutched across my chest, and the other arm used to search Google, I read that it might be thrush- a yeast infection of the nipple and breast.  I looked inside Ted’s mouth and saw small white patches in his cheeks.  I went to the pediatrician’s night clinic to confirm the diagnosis of thrush.  Then I drove to the pharmacy in tears, to get our prescriptions.   The pain, the frustration, the thrush diagnosis—were pushing me over the edge.   But I didn’t want to stop breastfeeding.

I called the ENT doctor’s office the next morning, and politely but desperately asked if there was any way they could see us sooner due to the severe pain I was having.  They squeezed me in that day.

At our appointment, I explained to the doctor how I knew Ted’s latch was drastically different than my first 2 babies.   We discussed the procedure, I signed a consent form, and the nurses prepped the room for the frenotomy procedure.  Three-week-old Ted’s little body was placed onto the operating table, he was stabilized by a couple nurses, and the ENT clipped Ted’s lingual frenum with a surgical scissors.  Ted was immediately returned to me to breastfeed.  His latch was instantly better: deeper and less painful.  I was so relieved to have improvement.  My cracked nipples healed over the next week.

It took some time until the thrush was completely managed, but the frenotomy saved our breastfeeding relationship and I exclusively breastfed Ted for 13 months.

_____

Fast forward to when my 4th child, Clara, was born.  She latched on fairly well in the hospital and gained weight well.   I thought we were in the clear.

However, a few months passed and the initial soreness from breastfeeding was not going away.  Her latch was shallow, but not as bad as Ted’s.  She popped on and off the breast frequently and was gassy.  I had sore nipples and cracking again.  I was dreading each feeding as her latch rubbed on the open cracks causing awful, toe-curling pain.  I pumped several feedings (which also hurt) so my husband could bottle feed her and I could take a break from her poor latch.  I tried different nursing positions, used prescription APNO (Jack Newman’s all purpose nipple ointment), and did everything I knew to improve her shallow latch.  I also dealt with clogged ducts and developed mastitis, and was in the doctor’s office again, in tears.

upper lip tie, laser revision, laser frenectomy

I noticed Clara’s upper lip was often tucked in while nursing, and it did not flange.  In our local private Facebook group for breastfeeding mothers, a mom named Tricia mentioned difficulties breastfeeding due to a lip tie.  I had become aware of tongue-ties after my experience with Ted, but I was unsure how lip ties affected breastfeeding   I needed to find out more…

I learned that when a lip tie was present, a posterior tongue-tie was usually present.  A medical practitioner may be familiar with anterior tongue ties, however, posterior tongue-ties are not as visible to the untrained eye.  Clara also had a posterior tongue tie.

Lip and Tongue Tie Revision

I engaged myself in learning about lip ties and tongue-ties as I had experienced so much of this myself with minimal local support.  Let me emphasize, I really appreciate and respect my local lactation consultants and pediatricians.  They are wonderful people!   They just were not (at that time) familiar enough with lip ties and posterior tongue-ties.

Lip and Tongue Tie Revision, Laser Revision

I learned there were dentists revising infant lip and tongue-ties with lasers.  I was using a laser  almost daily in our Dubuque, Iowa dental practice and had done many laser frenectomies on older children and adults.  Dr. Mindy Hochgesang became my mentor and allowed me to observe the lip and tongue tie revision procedure.

As a passionate supporter of breastfeeding, this opened the door for me to “pay it forward.”  It was mom-to-mom support that sent me on this journey.  I could now give both mom-to-mom support and provider-to-mom support for breastfeeding dyads struggling with tongue and lip ties themselves.

My daughter Clara was my first infant patient.   I revised her lip tie and posterior tongue-tie, we did post-frenotomy care, we both healed, and now we have a great breastfeeding relationship.

 

laser dentist, Iowa laser dentist, lip tie, tongue tie

Dr. Kristen Berning provides support for breastfeeding moms who are dealing with lip and tongue ties.  She uses a laser to perform lip and tongue tie revision, including posterior tongue ties.  Her office is located at 4200 Asbury Road, Dubuque, IA 52002 and serves the Cedar Rapids & Dubuque, IA, Galena, IL and Madison, WI areas.  To schedule a consultation or ask questions about laser lip and tongue tie revision with Dr. Kristen Berning please call 563-556-2711 or contact us online.

Veronica Jacobsen, BA, CLC, CPST, LCCE, FACCE
Birth Doula, Certified Lactation Counselor, Child Passenger Safety Technician, Lamaze Certified Childbirth Educator, Fellow of the Academy of Certified Childbirth Educators

Opening BabyLove in September of 2011 has allowed me to build a space where all families can come to get good information in a caring, welcoming environment. I have found that not only do I love teaching more than ever, but I also really love running a business. Hopefully my passion for every aspect of BabyLove shines through.
I live in Richfield with my husband, and I am a mother of a two great children. When I can steal a few free moments, I love to go on adventures with my family, cook, garden, thrift, can, and craft.

Adult Tongue Tie Release Redux

tongue tie release result

So, today I went back for a check in and follow up on my tongue tie revision. I’ve found it really interesting to go through this entire experience. It’s brought me worlds of understanding about what babies and kids are probably going through. I’ve also noticed additional physical changes since my last post. I’ve also had some thoughts about tongue ties that aren’t proven, but I think connect some dots about things we already knew about.

First of all, this is what my tongue looked like this morning:

photo of tongue tie

 

 

Notice something that we didn’t see before? There are three attachments that you didn’t see before. As my tongue healed, they became more and more noticeable. Also, starting at the end of last week (2 1/2 weeks after the initial revision), I started to feel the tension that I had before, but on the right side of my body. It’s also interesting to note that the attachment on the right side of my tongue was the least prominent of the 3. I had severe scalp pain on Sunday. too.

There are a few things I’ve observed that I really want parents AND providers to know about:

  • First of all, these additional attachments came forward on their own as my body resettled and all of my bones and muscles shifted post-revision. So if you see attachments after a revision is healed, do not assume the professional who did the revision didn’t do a complete job. Furthermore, professionals who do revisions SHOULD do additional revisions at no extra fee, or figure out a way to make such an arrangement work.
  • There was some tissue that did almost look like it reattached, but that tissue did not affect the function of my tongue.
  • As the new attachments came forward, especially the center attachment, stretching my tongue became painful. It was very clear that this was tissue that had never been stretched like that before.
  • Post-revision body work is essential. I’ve been going in for adjustments to my head and shoulders (knees and toes) right after the revisions and then even a couple of times in between the revisions. Don’t skip this!
  • The pain afterwards has been manageable. Eating hasn’t been too bad. However, if your baby was revised and you’re breastfeeding, keep your baby skin to skin a lot that first day and nurse a lot. Breastfeeding reduces pain.
  • In addition to the stretches, rinsing with salt water and applying coconut oil to the underside of my tongue has been really helpful in the healing process.

I’ll follow up in a couple of days with additional thoughts that I have as things heal from this last revision. In the meantime, I leave you with this thought:

Tongue ties have been revised for hundreds if not thousands of years. There is already some really interesting research that’s starting to point towards the short term and long term impact of revision (or not revising).  However…there are some assumptions that are being made that really need to stop. No, Cranial Sacral Therapy isn’t the only way to do bodywork prior to and after revision, just like not assuming ENTs or any other discipline know how to properly assess what we see. Also, I like being able to measure things just as much as the next person, but I’d strongly caution anyone who wants to ONLY revise according to very rigid standards. There can be a lot of different ways these ties can exist. As I keep saying over and over, providers need to listen to parents and be willing to learn from them and each other. I’ve learned SO MUCH just by talking to parents, kids, and other adults, and some of my biggest revelations have come from consulting with other specialties. I encourage others to do the same.

I’ll check in again soon.

Warmly,

Veronica

 

Veronica Jacobsen, BA, CLC, CPST, LCCE, FACCE
Birth Doula, Certified Lactation Counselor, Child Passenger Safety Technician, Lamaze Certified Childbirth Educator, Fellow of the Academy of Certified Childbirth Educators

Opening BabyLove in September of 2011 has allowed me to build a space where all families can come to get good information in a caring, welcoming environment. I have found that not only do I love teaching more than ever, but I also really love running a business. Hopefully my passion for every aspect of BabyLove shines through.
I live in Richfield with my husband, and I am a mother of a two great children. When I can steal a few free moments, I love to go on adventures with my family, cook, garden, thrift, can, and craft.

5 changes after my frenectomy

Adult Tongue Tie

Well, last week I got really brave and took the plunge: I finally was able to find a dentist who was willing to take me on as a test case to have my tongue tie released. I’ve read only the tiniest of handful of accounts from adults who had revisions, so I wanted to share with you some things that I’ve noticed one week out. PLEASE NOTE: Since I was a test case, it turned out that I had a lot to release, so we know I need more revision. 30-something-year-old tongues turn out to be a little bit more apt to bleed. It was done bleeding within 5 minutes, but I’ll be going back for more revision once this heals.

First, a bit of background: I’ve been told I was a very colicky baby for the first 4 months of my life. My mother swears it only got better when I got put on some antibiotics, but I was also having weight-gain issues. I wasn’t really gaining weight at all. I looked like a tiny, translucent bird in all of my pictures. But God bless my mother, she didn’t give up on breastfeeding. She did the best she could.

I have a wire that has been holding my front two teeth together since I got my braces off as a teenager. At some point, I did otherwise break my lip tie, but the tissue between the front teeth is thick enough that there would be a gap there if left unwired. I haven’t gone back to look at pictures from childhood to see if I can detect a lip tie. And, as we often say, almost always is there a tongue tie when there is a lip tie. And my tongue (especially now that I’m 30-something) had a VERY thick frenulum.

Just one aside: I’ve been a little stunned to see the turn that the conversation has taken in recent months on the issue of tongue ties. Specifically, there have been some very vitriolic conversations online by lactation professionals that have taken on tones of blaming parents for MAKING tongue ties an issue. I’ve seen the phrase “parents want the easy fix” pop up over and over again. I’ve read as IBCLCs INSIST that the parents just didn’t try hard enough to work with a lactation consultant on positioning and latch. Unfortunately, some of these IBCLCs have built up a wide audience, and their views can be their views, but what I keep pointing out (and it keeps falling on deaf ears), is that parents don’t get to the tongue tie conclusion easily. Some may, if they are lucky enough to give birth in a hospital with an educated pediatrician who routinely revises tongue ties. Beyond that, by the time I see families join my group, they are at a point of crisis. Real, real crisis. Telling moms they need to “try harder” and see ANOTHER lactation consultant (when often they’ve seen 2-3, or when there literally isn’t one for miles and miles around) is mean at best and unethical at worst (if a care provider can’t provide appropriate care, they are under an ethical obligation to refer to a provider who can.) I was VERY tempted to screen shot some of the very negative posts that I was reading last week and every time they ranted about tongue ties, I would replace the mentions with the phrase “Artificial Baby Milk”; the results would be interesting. (As in: “Parents who are too lazy to work with a lactation consultant look at tongue ties Artificial Baby Milk as the easy fix.” See what I did there?)

Anyway.

Here are the 5 things I’ve noticed in the last 7 days after my release:

1) The tension headaches are largely gone- If you’ve seen my video on how everything in the head is connected, you’d know that the muscles around the skull can hold a lot of tension as a result of having a tongue tightly tethered to the bottom of the mouth. I did go in for some body work with my favorite chiro right after the revision to help release the tension, and it has largely stayed away (well, until yesterday, when I had a train wreck of a day, but I’m already feeling better.)

2) I don’t carry my tension in my shoulders day in and day out- I’ve had so many massages, so many adjustments through the years, and I’ve never had any luck eliminating the tension in my shoulders for more than an hour or two. Well, now I feel like I can. Muscle memory is strong, so I have to be very conscious of my shoulders, but it’s easy to get them to relax when I try.

3) My jaw doesn’t click- OK, so this did take a couple of adjustments to get addressed, but as of now, my jaw is, for the first time ever, click-free and EVEN. I have to imagine I had this same jaw issue when I was born–and I’m pretty sure, even with the perfect latch, my jaw movement would have made it difficult to transfer milk.

4) My tongue sits on the roof of my mouth- Again, I’m still retraining myself to do this, but I can actually keep my tongue where it belongs, whereas before my tongue rested on the back of my teeth and pushed outward on them, essentially ruining the thousands of dollars paid to correct my overbite.

5) My Eustachian tubes moved- Seriously. I felt them move upward over the weekend. Not only that, but I felt them clear out, like they could drain finally. Like EVERYTHING else, it wasn’t until things had changed that I could notice how much of an impact this all made on my body.

Other adults have reported changes in their gaits, posture, and even improved thyroid function.  Time will tell if I see some of those improvements, too. It would have been nice to have this fixed as a baby, but….we all do the best we can with what we have at the time.

Have questions? Let me know!

Warmly,

Veronica

 

Veronica Jacobsen, BA, CLC, CPST, LCCE, FACCE
Birth Doula, Certified Lactation Counselor, Child Passenger Safety Technician, Lamaze Certified Childbirth Educator, Fellow of the Academy of Certified Childbirth Educators

Opening BabyLove in September of 2011 has allowed me to build a space where all families can come to get good information in a caring, welcoming environment. I have found that not only do I love teaching more than ever, but I also really love running a business. Hopefully my passion for every aspect of BabyLove shines through.
I live in Richfield with my husband, and I am a mother of a two great children. When I can steal a few free moments, I love to go on adventures with my family, cook, garden, thrift, can, and craft.

When the parent knows more than the physician

parent versus physician

Two articles that I’ve read In the last 3 days have compelled me to share something here on the blog. The first was a story in this month’s The Atlantic that talked about the amount of burnout that physicians face, largely due to the insane demands of charting and other administrative functions. The other was a story from The New York Times about how parents can sometimes do so much research that they know more about their kids’ health conditions than the doctors who end up treating them, largely because the parents have made time for the research that the already-frazzled physicians don’t have.

I’ve told my story before about my daughter’s birth, and I detailed her lip tie release last year. (Oh, and by the way, her front two teeth no longer have a gap. Take that, lip tie deniers.) There’s another story, though, that had way more of an impact on me as a mother and as an educator. It’s the story of my daughter’s obstructive sleep apnea.

I get that all new moms are anxious when it comes to their baby’s sleep. I mean, we do talk about SIDS quite a lot, so there is naturally going to be some worry about making sleep safe. But, in those first few days at home, in the middle of the night, I was disturbed to realize: my daughter would stop breathing while asleep for 3-4 seconds at a time, and then start breathing again with a small gasp. At first I thought it was my imagination, but the hours I spent sleeping with my hand on her while she was asleep in her bassinet next to me did eventually convince me there was a problem that I wasn’t making up.

I shouldn’t tell you this, but things were a little better when I finally threw in the towel and put my daughter to sleep on her side instead of the officially approved back position. When on her side, she was able to flex her neck, and she would tilt back her neck far enough to open and straighten her airway while she slept. She would continue to sleep in that position, neck bent and mouth open, for the entire first four years of her life.

When I finally ventured out of the house with my 4 week old daughter to have lunch with a friend, it was my very, very exhausted self who had been holding her upright for every nap that was gently counseled to try cosleeping. “Just try it for a nap,” she suggested. That afternoon, after looking up all of the safety guidelines, I did, in fact, try cosleeping for the first time. It was a life-changing revelation. From that nap forward, my daughter did co sleep with me until she was 9 months old.

The researchers who do study safe sleep have found that when breastfeeding mothers and babies sleep close together, either in the same bed (again, following the established safety guidelines) or in a crib or bassinet within arms reach of moms, there is a synchronization of sleep patterns that is believed to be important for newborns who aren’t very good at regulating their breathing during sleep on their own. Furthermore, as researcher Kathleen Kendall Tackett once told a plenary session at a conference in Boston that I was attending, for babies with obstructive sleep apnea, co sleeping and bed sharing can be critically important for helping those babies keep breathing.

Now, my story isn’t as much about co sleeping as what happened when I tried to get help for my daughter. At one of her very first well baby checks, I mentioned to her doctor that she would stop breathing when she was asleep. As a new mom, he dismissed any of my claims. As she grew and started to take naps on her own, my husband and I got used to listening to her regular gasps for air over the baby monitor. In a messed up way, those gasps were reassuring: they told us she was still breathing, just not correctly.

Later on, after doing some more research and after it was abundantly clear that she would always have short periods of apnea while sleeping, I did broach the subject again with her doctor. He finally listened and said a sleep study should be done, but the wait list was months long. Shortly after that, our lives spun into chaos: our basement was destroyed during a very heavy rainstorm, requiring us to gut the entire thing and start over from scratch, my husband, sensing an impending layoff, got a job in downtown Minneapolis and had a 12 hour workday and commute, and I became pregnant with my son. (Looking back, it was probably inevitable that I’d end up with postpartum anxiety.)

Tomorrow: The advocacy journey continues

Veronica Jacobsen, BA, CLC, CPST, LCCE, FACCE
Birth Doula, Certified Lactation Counselor, Child Passenger Safety Technician, Lamaze Certified Childbirth Educator, Fellow of the Academy of Certified Childbirth Educators

Opening BabyLove in September of 2011 has allowed me to build a space where all families can come to get good information in a caring, welcoming environment. I have found that not only do I love teaching more than ever, but I also really love running a business. Hopefully my passion for every aspect of BabyLove shines through.
I live in Richfield with my husband, and I am a mother of a two great children. When I can steal a few free moments, I love to go on adventures with my family, cook, garden, thrift, can, and craft.

Tongue Ties: PLEASE Listen!

tongue ties please listen

I have posts queued up for my #write31days, but I’m sitting in the dentist’s office while my kids have their teeth cleaned, and I have some things I need to say before I spend a whole month talking about safe and healthy birth.

As pretty much everyone knows, I’ve spent the last year working on increasing awareness of and finding resources for tongue tie and lip tie. I’ve blogged in frustration before about the insane amount of time I was spending this spring trying to find providers to send families to. But today, I’m not going to write this post from the point of view of an advocate, but rather, as a mother, speaking on behalf of other families, with the hopes that some providers will read this and take heed.

I started this journey as a mother with two kids who have tongue ties. And yes, they do have symptoms that cause issues that directly affect their quality of life. I’ve had ENTs, pediatricians, and numerous dentists all ignore and completely dismiss any notion that the kids have tongue ties. And while my daughter got her lip tie released, she still has a tongue tie that I’m trying to figure out how to get released.

So, yet again, on behalf of every parent who is facing the same issues and fight I am, be they for a newborn or an older child, I really want to know why, if you are a care provider,  you refuse to listen to the parents who come to you? I mean, I get that it may not be something you learned about in school, but so what? And don’t tell me that there isn’t any research to back up our assertions. There are a good amount of studies. And I get that they might not be the best quality of studies, but so what? Again, as a mom, I’m really sick and tired of the condescending attitude I get, and as an advocate, I’m really, really sick and tired of watching other moms and dads get ignored, too. It’s irritating, it’s frustrating, and it shows an immense lack of compassion and clinical skills every time you dismiss a desperate parent out of hand.

And don’t EVEN get me started on the insanely stupid turf wars. At a time when we have only a handful of providers to those, and a few various providers to address the after care needs, I’m seeing too many sharp elbows fly, with LCs and dentists and ENTs and chiros all working super hard to protect their piece of the action when they really don’t even have the capacity to work with all of the families that need it.

(Ok, so I will admit that I have my own preferred providers to refer families to, but it’s because I get burned when I refer to a provider that I’ve never met or even talked to before. So yes, I only have a tiny handful of providers I trust, which isn’t to say that there aren’t other good providers out there, but I need to talk to them, and then I can feel ok referring families to them.)

So my challenge to everyone, whether or not you are a care provider involved in ties, is to open your ears. Do more than just read one or two articles. Do your due diligence. Keep an open mind. LISTEN, for #*^% sake, when mothers come to you, having done their own research and figuring out their kids’ issues. Oh, and just STOP making it only about breastfeeding. That’s like saying tonsils only have to do with strep throat. Tongue ties and lip ties are physical abnormalities (albeit common abnormalities) that create a cascade of health issues, even once we’ve adapted to the limits the ties create.

Seriously. Keep an open mind. Go find the research. And stop talking and start listening to the moms.

Veronica

 

Veronica Jacobsen, BA, CLC, CPST, LCCE, FACCE
Birth Doula, Certified Lactation Counselor, Child Passenger Safety Technician, Lamaze Certified Childbirth Educator, Fellow of the Academy of Certified Childbirth Educators

Opening BabyLove in September of 2011 has allowed me to build a space where all families can come to get good information in a caring, welcoming environment. I have found that not only do I love teaching more than ever, but I also really love running a business. Hopefully my passion for every aspect of BabyLove shines through.
I live in Richfield with my husband, and I am a mother of a two great children. When I can steal a few free moments, I love to go on adventures with my family, cook, garden, thrift, can, and craft.

Tongue Tie, Lip Tie, and Skull Anatomy

OK, so today I’ve decided to tackle the topic of tongue tie using pictures. Tongue tie and lip tie cause more than just issues with the tongue, including things like sleep apnea, TMJ, migraines, recessed chin, and torticollis.

So, it’s a long video, and I get sidetracked once to talk about flat heads, but I think (hope!) you find it helpful. And sorry about the dog who needed to go pee. And yes, there is a pressure canner behind me. I had to re-process spaghetti sauce I made from tomatoes from my garden yesterday.

I hope it makes sense! Enjoy!

 

Links:

Anatomy of the head

Dr. Laura at Acu-Chiropractic

Veronica Jacobsen, BA, CLC, CPST, LCCE, FACCE
Birth Doula, Certified Lactation Counselor, Child Passenger Safety Technician, Lamaze Certified Childbirth Educator, Fellow of the Academy of Certified Childbirth Educators

Opening BabyLove in September of 2011 has allowed me to build a space where all families can come to get good information in a caring, welcoming environment. I have found that not only do I love teaching more than ever, but I also really love running a business. Hopefully my passion for every aspect of BabyLove shines through.
I live in Richfield with my husband, and I am a mother of a two great children. When I can steal a few free moments, I love to go on adventures with my family, cook, garden, thrift, can, and craft.