So in April I had a baby -- a sweet, gorgeous, pink little baby. He is my fourth baby, fourth boy in fact -- and what a scrumptious, squishy baby he is. I love him. We named him Ezra. Out in the world and on my chest, I soon began to see if he would nurse. And he did. Victoriously. I was happy, and he was happy. My midwife and I watched as his tongue passed his lower gum line and came out of his mouth, and we both hoorayed, "He's not tongue-tied!" I have not previously had a baby who was tongue-tied, but my sister has, and it was a lot of trouble to get diagnosed and treated. Fast forward to day three: it's 10:00 at night. I am perched at my computer, Ezra screaming on my lap as I watch how-to-latch videos through tearful eyes. Each extra-pink nipple bears a horizontal stripe of raw, rubbed openness coupled with tiny scabs, and with every suck, I tighten and cringe and cry. I hate this. I label him. He is a bad nurser. At this point in my life I have logged 11 years breastfeeding 3 different children. I have been a peer-breastfeeding counselor for 10 years. I have a pretty well-rounded knowledge of all-things-breastfeeding, both experiential and educational. I have helped countless women in similar situations figure out how to better nurse to ease or eliminate pain. And here I sit, alone at my computer, because he just can't do it right. Because he is a bad nurser. ![]() Being new to the area, I don't have a clue who would be a good person to call for help. I left an army of good friends and trusted resources -- IBCLCs, LLL Leaders, midwives, doulas, and nurses -- years in the making. Okay, troubleshoot: I try dragging the nipple down his face and over his nose. I try teacup hold of the nipple. I try the "flipple." I try laid-back breastfeeding/biological nursing. I keep my finger taut to the nipple to try and push/shove it further back into his mouth. I try asymmetrical latch, symmetrical latch, sideways latch, and all-around-the-clock-face latch ("would you, could you in a tree?"). I even have my husband buy me a nipple shield and we try that (incidentally, that seemed to hurt even more, as Ezra couldn't latch to the shield so he would just chew my silicone-covered, damaged nipple). Nothing works, for weeks. I was still in great pain, but the physical damage to my nipples was not getting worse, and that made me hopeful. I found some Hydrogel Pads I had gotten as samples once, and they helped with the healing. I figured out by latching him in football hold, nursing sessions became bearable. We would also nurse lying down at night, turning on a small light to latch, stopping to make him try again when it was really, really painful (because it was never not painful). I kept looking for answers for my bad nurser. Aside from the pain I was dealing with, Ezra gained weight exponentially; at one stretch between weigh-ins, he gained 38 ounces in 21 days. He did spit up a lot, like a lot A LOT -- overzealous amounts of milk, often flying out of his mouth in arching streams of stinky frothiness. Keeping the nipple in his mouth was difficult, as it would constantly slide out unless I held my breast in place. Once in a while when the nipple neared his lips, this disgusted look would appear on his face, as if I had presented him with something rotten and spoiled, and he would slowly chew his way up the nipple to latch. And as he nursed, he clicked like a horse trotting on pavement. Armed with a digital camera, I took pictures of this baby every day for sport -- ahh, the joys of the Digital Age! When he was 3 weeks old I was scrolling through the latest batch, and suddenly, there it was: Ezra was crying, eyes shut, mouth open, with a tongue that curled and cupped up. Wait, I have seen that tongue before! That's a posterior tongue-tie (PTT)! Soon after birth I knew Ezra had a thick labial frenum (upper lip-tie, ULT), but I didn't feel this was the root of our pain; one of my other babies had one and it wasn't an issue, so I dismissed it without investigating the anatomy of his mouth any further. Once I saw this picture and that light went on, I began searching online, I posted the picture on Facebook to an IBCLC friend, and my thoughts about this baby shifted: Maybe he's not a bad nurser!? ![]() I found Cathy Watson Genna's website incredibly helpful (http://www.cwgenna.com). We had met a few years before when she was a keynote at our local breastfeeding conference, and I decided to share this picture with her. She used the term "stingray tongue" to describe his posterior tongue-tie (PTT). From her site I found a link to practitioners around the country who diagnose and treat tongue-ties. I called to make an appointment at a clinic about 90 minutes away and was scheduled about 3 weeks out. Although I have been working with breastfeeding moms for ten years, I had not heard the term "posterior tongue-tie" until about three years ago; even then, I had not helped a mom with a PTT -- it had all been hearing and reading others' experiences. When we spoke of tongue-ties, we meant anterior tongue-ties, the obvious tethered (often heart-shaped) tongue, easy to spot, that could be clipped in a simple office procedure. While lip-ties I was familiar with, there still wasn't a lot of focus on it other than just getting babies to flange their lips out to latch. By the time we met with the doctor (pediatrician and IBCLC), I was certain Ezra had an ULT, PTT, and high-arch palate; all three of my suspicions were confirmed. This doctor agreed to fix (release or revise) the PTT but is not a believer in touching upper lip-ties. By using scissors, a diamond-shaped cut under the tongue would give it more mobility and hopefully make breastfeeding better for us. We had Ezra at home with a midwife, and as such, I chose to decline the Vitamin K shot. This doctor wanted him to have that shot first as PTTs tend to bleed more than anterior TTs. Ezra also had a cold with an impressive cough, so it was decided we would make an appointment to have the procedure done at a later date. I left satisfied with the diagnosis and proposed treatment. While waiting Ezra's cold out, I was hooked into an amazing network of parents and professionals who have experience, knowledge, resources, and often a unique understanding of all-things-tied-in-the-mouth: Tongue Tie Babies Support Group on Facebook. There I have learned not many professionals know how to identify ties (especially PTTs); not many professionals believe in correcting ties, especially in infants; not many professionals believe ties can interfere with feeding, speech, digestion, etc. I have seen that many different kinds of professionals treat ties, from pediatricians to dentists to ENTs and GPs -- there isn't one kind of doctor who specializes in this area, it seems to be more about education and awareness than specific training that would come with a particular area of study. While some doctors fix ties with scissors, others prefer to use lasers. Some breastfeeding moms notice immediate relief and change, and others report it took weeks for things to feel better. Having more information and more time to think, I began to second-guess taking Ezra back to the doctor we saw. It had been brought to my attention by many people that Vitamin K, at this point, is most likely unnecessary because of his age. And I learned I might have dismissed the role of Ezra's ULT a little too quickly; at the time I didn't think to ask about the Vitamin K and the ULT as I was a bit overwhelmed by my crying baby and the (unexpected, male, older) resident shadowing the doctor as she examined not only my baby, but also my breasts. I found a second choice, three and a half hours away, where the treatment is done with a laser; not only could we get the PTT taken care of, we could also have the ULT revised as this doctor (a dentist) does both. I am not sure what to expect, but I am hopeful this is the right step for us...our appointment is next week.
9 Comments
Kelly
6/26/2013 11:35:25 am
I could have written this post. Third baby, first two with anterior ties and clipped in office. Hardest birth-3 mos I have ever went through. Laser release was performed by a dentist (only in my area...hour away) FINALLY at 8wks of age. It took another month to see full effect. We were also dealing with OALD which made latching even harder. Praying everything goes well! Can wait to hear update on your little guy!!
Reply
We've been going through lots of the same stuff - except that my baby was such a bad nurser that he wasn't gaining weight. Thankfully our LC recognized his tongue tie. It was an anterior tie. We had it clipped twice. Then realized that he had a PTT & just had it clipped last week. I wish we could have had the laser done, but we just couldn't afford it. I hope everything goes well for you. But do remember that it can take a week or two for them to learn how to use their tongue properly. Also, cranial sacral therapy is also supposed to be really good for tongue tied babies to help loosen them up from all the incorrect nursing.
Reply
CHelsea
7/2/2013 09:13:22 am
Thank you for sharing your sons story. I am trying to figure all this out and it helps to see what works for you and others. I am waiting for our doctor to give us a referral to get our baby (4 months odl) looked at. Breastfeeding has been awful, and I want to keep it up but I noticed my supply seems to be getting worse. I keeping my fingers crossed this is what she needs!
Reply
Marcy, IBCLC, RLC
8/14/2013 09:58:02 am
I think you accurately portray the situation many families face. Would you allow me to print this out to give to families I work with? You write well. The first part shows so much of the struggle, finding experts, etc. while the second part shows the what to expect part. Would you please let me know if I can use this as a handout in my practice?
Reply
Lina M
10/21/2013 01:30:20 pm
I kind of feel like screaming!!! We went through so much frustrating doctors visits and no one would believe he had a tongue tie! I knew something was wrong. I saw a lactation nurse, our paediatrician, our dentist. My visiting health nurse was the one who finally identified what she thought might be the reason he wasn't gaining weight and my nipples were mulch! We got in touch with Dr Levinkind and I was so full of relief when it was finally acknowledged, yes! there is a problem! My bub is now happily gaining weight. I am foreve thankful to our visiting nurse!
Reply
Riikka
1/27/2014 01:11:47 am
Thank you for an excellent picture and text! I shared the link with Finnish breastfeeding peer support counselors and I am sure that this will be very helpful. Thank you!
Reply
Valerie
1/29/2014 01:43:57 pm
Same story! After two frenulum clippings, 3 lactation consultant appointments and 10 weeks of PT twice a week, nothing had changed. Upon doing research, I was convinced of a PTT and hopped a plane from ID to CA to Dr. James Jesse for treatment. OMG!! I only wish I had known from the beginning that this was the issue! After laser treatment, nursing was so wonderful! No more excruciating pain from chomping - just suckling that kind of tickled - how it was supposed to be from the start! If only the professionals would have listened to me when I kept saying the pain was horrible. Instead, they thought maybe it was the latch or Raynaud's syndrome. Thank goodness I followed my gut instincts.
Reply
Jackie
6/16/2014 11:34:03 am
I feel like you reached into my head and took out the words.
Reply
Your comment will be posted after it is approved.
Leave a Reply. |
My Life...♥ four young boys and a boy dog (offspring) Categories
All
Archives
July 2020
|