Dysfunctional Suck

I don’t get to blog nearly as much as I would like to, but one thing I have learned about life with four kids is that it’s insanely busy!  But we’ve had some issues with Shiloh’s nursing that I really want to blog about, in part so that I have it written down for future reference, and so that it may help others.

Shiloh has never been an easy baby to nurse.  She’s always spit up quite a bit after nursing (but not the bottle), gagged easily, and popped off of the breast continuously.  Nursing sessions generally involve a lot of popping on and off, her getting frustrated, arms and legs (hers) flailing all about and sessions ending with both of us frazzled.  I always have to cut her off – she would like to keep going, but she can’t/won’t and just gets more agitated as she tries and I have to stop each nursing session before it dissolves into complete frustration on her part.

It’s really bothered me, as I’ve notice a few things: (1) I have NEVER had to “break her suction” from nursing.  She just doesn’t hold on that way a nursing mom knows – the death suction that requires a strategically placed finger to break; (2) she NEVER gets “milk drunk”, that contented, dreamy, “man, is my belly full and life is good!” roll over and pass out maneuver (often with some milk at the corner of baby’s mouth) that a content, freshly-nursed baby does; (3) she wants to nurse every 1.5 – 2 hours (STILL!) at 4+ months; (4) my production isn’t what it should be at this point and I have to pump every 2 hours at work to maintain my supply.  It’s a LOT of work!

We first saw a lactation consultant (LC) at 3 days, when she was sent back to the hospital for jaundice and dehydration.  Looking back, it’s clear she was unable to nurse well enough from the start.

After struggling with her nursing, I saw another LC at two months, who watched us nurse and she deemed Shiloh a “difficult nursling”.  I felt ok with that – some babies are just harder to nurse than others, and she was gaining weight, pooping and peeing as she should… she was just difficult.

But it felt like it was getting worse.  And when I went back to work and start pumping in earnest, I realized I just wasn’t getting what I should.  I get 2 oz per pumping session.  Rarely I get 3 oz.  Once or twice I got 4 and was thrilled!  I started taking Domperidone, which my doctor prescribed for me at a local compounding pharmacy, to try to boost my production.  The thing with Dom is, it really only works if it’s a hormonal issue with the mom – not if there is a sucking issue with the baby causing the low supply.  It wasn’t doing much for me.

We got to almost 4 months and it was becoming such an ordeal to nurse her (not to mention I can’t really be discreet nursing her in public and can’t nurse her in a carrier at all) that I was starting to wonder how we’d ever make it six months, let alone a year (my minimum goal) or 18 months (my ideal goal).  I started actually having nightmares about nursing my baby and I just knew something was wrong.

My nipples were starting to hurt, which is never a good sign in a nursing relationship, and she was starting to try to do what I call “distance nursing”, where she would straight-arm my breast and literally pull as far back on my nipple as possible and try to nurse.  I swear she would nurse by osmosis if she could!  No wonder I was getting sore.

Finally, after I complained about it (again) on my message board at ConnectedMoms.com, my friend Karen asked if she might have lip-tie.  Now I have heard of tongue-tie, where the lower frenulum – that little web of skin that attaches your tongue to the lower jaw – is set too tight or too far forward that you can’t get the proper tongue motion needed for nursing.  Standard signs are not being able to stick one’s tongue out past the lower lip or a heart-shaped tongue, neither of which Shiloh had.  But lip-tie was new to me.  I pulled back Shiloh’s upper lip and sure enough, this is what I saw:

Hello, big, fat, upper frenulum!
Hello, big, fat, upper frenulum!

Well, gee!  No WONDER my baby couldn’t latch and nurse!  She couldn’t possibly flare her upper lip and get proper suction with a big, fat frenulum tethered low like THAT!  I felt so relieved!  We found the problem!  All we had to do was get the tie severed (called a frenotomy) and we’d be home free!

If only it were that easy.

I immediately called for another LC visit to confirm my finding.  I had to get another referral from our pediatrician since my baby was “so old” – apparently insurance thinks only very young babies need LC help.

I also poured over everything I could find about lip-tie, which wasn’t much.  So little exists on the Internet about it, which seemed so weird, since tongue-tie is a very prominently discussed – and treated – nursing issue.

It turns out there’s a pediatric dentist in New York named Dr. Kotlow who is very well-versed in lip-tie and the effects on breastfeeding, and does frenotomies with a laser.  I had read that he will give advice via email, so I sent him the picture and a little background info on our nursing issues (which also now included “clicking” noises when she nursed).  He wrote back a very simple, “It’s a very obvious one.”

More confirmation of my suspicions!

I started calling pediatric dentists to see if any of them would perform an upper – or maxillary – frenotomy.  One practice told me that because they often “heal back together”, it wasn’t worth the effort.  No one would do it.

A friend online suggested an ENT, so I started calling them.  I found one and the office said yes!  He would do it right there in the office!  Finally!  An appointment was set for Monday.

The LC came to us on Saturday and I asked her to look at Shiloh’s frenulum.  Amazingly, in the two previous visits with LCs, NO ONE EVER LOOKED IN HER MOUTH.  I put that in angry caps because if you found this because you are having nursing issues, any LC worth her weight should always check the baby’s mouth!  How can you tell if a baby has the proper structure and mechanisms for a good latch/suck if you don’t even look?

The LC agreed that the upper frenulum looked thick/low and she would consider the frenotomy if it were her baby.  Further confirmation that we found our problem.  I felt good going to the ENT that Monday.

The ENT saw Shiloh, checked her mouth structure, looked at her frenulum, took off his gloves and told me to go ahead and nurse her (she was getting hungry) and he’d be back.  When he left, Skip and I assumed he wasn’t going to do anything, because all of my reading had said that they do the frenotomy and then ask you to nurse immediately after to soothe.  But I kept hoping he was our answer.

He came back and told me that if she does better with bottles, I should just pump and bottle feed her.  I felt defeated in that very moment.  I’d pinned all my hopes on this guy and here he was, suggesting I become a dairy cow.  I know pumping and bottle feeding works for some moms, and sometimes, it’s all you can do.  Heck, I pumped exclusively for the boys when they were in the NICU.  But I ALSO knew in my heart that she had an issue we could fix, and I shouldn’t HAVE to pump and bottle feed her.  I wanted to nurse my baby.

He further told me that “you don’t need your upper lip for sucking” (seriously?!).  He said he used to do them now and again, but then someone told him that severing that upper tie can damage the roots of the baby teeth.  He said he saw another baby just the week before and told them if they WANTED, they could come back and he would do the frenotomy, but they never called back, so clearly they decided against it.  He told me the same thing – if I WANTED him to do it, I could come back.

Well, I am pretty sure that other family didn’t go back to him BECAUSE HE WAS KIND OF A CONDESCENDING DICK.  Sorry, it’s an angry caps kind of night.  I left in tears and drove home with my baby, crying big, heaving sobs because that was the only person I’d been able to find to help me.  And he wouldn’t.  Well, he WOULD, reluctantly, and I wasn’t going to take my baby to someone who was a dick.

NOTE: I really like the word “dick” right now.  Forgive me.  It’s right up there with angry caps, and I told Skip I am going to start a revolution and “dick” is going to be the new “douchebag” in the world of insults.  Use it.

The next morning, we had an appointment and there was a different LC there.  I showed her the picture and she said it absolutely could be causing problems.  She gave me a list of providers who supposedly had been educated in tongue- and lip-ties, and a doctor who is at our doctor’s office was on the list.  Lucky for us, we had our 4 month checkup scheduled that day as well, and I talked to my doctor.  He said he would ask his colleague.  The call came later that day that the doctor “could” do it, but “wasn’t thrilled about it”.  I was running out of options.

Meanwhile, I was doubting myself – maybe there was a valid reason these doctors wouldn’t do it.  Or maybe it’s because they just don’t know what it’s like to want to nurse your baby and to be perfectly equipped to nurse your baby and to know there’s something going on with your baby and to want to just FIX YOUR BABY so she can be HAPPY with her precious boobies.

On to Wednesday (it was a crazy busy week) when I drove to Seattle (1.5+ hours south) to meet with an ENT about a surgery I can have to correct my hearing loss.  Turns out yes, I am a great candidate for the surgery (yay!) but no, he doesn’t do that surgery any more as it’s very specialized and he wasn’t doing them often enough to feel comfortable doing it (doh!). HOWEVER, I started asking him about Shiloh’s frenulum and showed him the picture.  He said he would do the frenotomy, but he would put her under general anesthesia for the procedure.  He said he had to confirm with the anesthesiologist and he would get back to me to confirm.  I felt like my drive was not wasted after all and we had finally found help!

But I really was struggling internally with the thought of her being put under.  And other places did it without putting them under, so maybe I needed to keep looking.  But where else would I look?

I emailed Dr. Kotlow in New York again with what the dick ENT had told me, particularly about damaging the baby teeth roots.  Dr. Kotlow (a pediatric dentist) said that the tie has nothing to do with the roots of the baby teeth and he felt confident that it was a contributing factor in our nursing issues.  He also knew no one anywhere near me who would do a frenotomy with a laser.  Defeated again.

At this point, a name had come across my search a few times.  Once while searching online, once on a list of breastfeeding resources I received, and a third time from one of the LCs I saw.  Her name is Dr. MaryAnn O’Hara and she runs a practice called Seattle Breastfeeding Medicine (SBM).  I called her office, but the message said she was out of town for a week.

I then tried another doctor in Seattle, Dr. Isabella Knox.  Her office told me she does frenotomies out of a different clinic and gave me the number.  I called and the clinic said she wouldn’t be back until late June, but she was practicing at a different (third) office.  That office told me to call the first office.  I found her cell phone number on a list of breastfeeding resources and I called and left her a desperate message.  She never called me back.

The ENT I saw for my own issues had also not called me back.  I emailed Dr. MaryAnn O’Hara’s office.  I called and left them a message.

I got a call back on Friday, July 5th, the last day that they were supposed to be on vacation.  The office manager said she was just in the office returning some phone calls and offered me an appointment on July 22nd.  It felt so very far away but I said I would take it.  I needed help.  They assured me that if the lip-tie was an issue, they would do the frenotomy right there at that appointment.

In the mean time, we continued to struggle.  I was pumping or nursing every 2 hours to maintain my supply.  Worried about her intake, I got a Supplemental Nursing System (SNS) which is an intricate little contraption where you wear a bottle of milk around your neck and then tape small tubes to your nipples, which allows the baby to suck milk from the tubes in addition to your breasts, ensuring they get enough milk.  We were soon a tangled mess of tubes and dripping milk and I was really having a hard time going on.

Weekends were the worst since I was feeding her 24/7, whereas during the week, she got some bottles at daycare to help make sure she got enough milk and which took some pressure off of me (except the part where I have to pump all.the.time to make enough bottles).  The next weekend, we both got so frustrated and tangled in the SNS that I had to just stop.  She screamed, I cried, and I handed her to Skip to give her a bottle.  Please.  Just GIVE HER A BOTTLE.

Tuesday, SBM called me that they had an opening and could see me Thursday, July 18.  YES.  PLEASE.  That was one less weekend (hopefully) that I had to struggle to feed this girl.  YES I WILL BE THERE.

We drove to Seattle today.  We got there and all I can say is Dr. O’Hara is AMAZING.  Those are not angry caps, those are OMG THIS WOMAN IS AMAZING caps.  She is so warm, friendly, and loved on Shiloh like you couldn’t believe.  She sang, she cooed, she got barfed on and then sang songs about the barf…  she was incredible.

Hanging out at Dr. O'Hara's
Hanging out at Dr. O’Hara’s

She had read my email and knew my story.  She was checking Shiloh’s mouth all over.  And then she started doing “body work” on her – sort of a gentle massage but more holding the hands still to release tension.  All the while singing and cooing to my sweet girl.

We talked about Shiloh’s birth, how she came out sort of sideways and there was a lot of twisting and pulling to help her out.  She felt that we had a few things going on:

  1. a lip-tie (YES!  FINALLY!)
  2. an anterior (far back) tongue-tie
  3. tension in Shiloh’s upper back
  4. a dysfunctional suck

She had her LC come in to check out Shiloh as well, and the LC agreed with everything Dr. O’Hara had found.  We talked and Dr. O’Hara recommended the upper frenotomy, and then body work to try to release the tension and help Shiloh’s sucking.  She recommended some OT as well to strengthen her suck.  She said if the body work didn’t help, then we could do the lower frenotomy but because I traveled so far, she was willing to do it today as she felt it was likely a contributing factor to our issues.

In the meantime, Shiloh got hungry and I nursed her.  Dr. O’Hara said my breasts looked fine and there was no reason for my supply issues except the fact that my baby can’t nurse properly, making it hard to stimulate them to make more milk.  She also saw Shiloh’s distance nursing attempts and said she has a very sensitive gag reflex and she’s pulling back to keep from gagging.  The OT can help that.

Then, it happened.  They swaddled my baby girl and laid her on the table.  I watched as the doctor, the LC and a visiting LC (who was observing and learning) gave Shiloh some sugar water to soothe her.  Then a shot to numb the top and another shot to numb the bottom.  I sat in the chair clutching Shiloh’s monkey blanket and trying not to cry.  I cheated and turned down my hearing aids to soften her cries that were ringing in my ear.  It was not quiet enough that I couldn’t hear the SNIP and another SNIP but she didn’t scream like I’d anticipated.

As soon as it was over, Dr. O’Hara scooped her up and gave her her pacifier.  And within an instant of that cuddle and humming, she was asleep.  Just like that.

We talked about after care a bit more – we will do some gentle pressure on the cuts to keep them from healing back, as well as gentle massage to help relieve the tension she’s built in her facial muscles to try to accommodate for her inability to latch/suck.  I asked Dr. O’Hara if I could take her picture with Shiloh because I was so touched with how caring – how amazing – this woman was and she said she would be honored.

Shiloh asleep in Dr. O'Hara's arms after her double frenectomy
Shiloh asleep in Dr. O’Hara’s arms after her double frenotomy

And then Dr. O’Hara carried my baby to my car and placed her asleep in her car seat for me.  I don’t know that I have ever met a more compassionate doctor and I am SO GLAD I reached out to her and waited for the appointment.

Shiloh slept almost the whole way home.  She fussed for about the last 10 minutes, and I stopped twice to soothe her as she had blood in and around her mouth and I didn’t want her to hurt herself somehow.  When we got home, she was her usual happy self and she nursed better.

We still have a ways to go.  We have to do these massages and stretches so it doesn’t “grow back” or heal back together.  And we will pursue the body work to relieve the other tensions and help her get her sucking more organized.  And likely some OT/ST.  She’ll need Tylenol and possibly Ibuprofen for a few days to ease the pain.

But someone finally helped us and I can’t tell you how relieved I feel tonight.  It can only get better from here.  And I hope if you found this by Googling “lip-tie” that you, too, get the help you need.  Nursing shouldn’t be this hard, and getting help shouldn’t be harder.  I will try to post another update in a few days/weeks when we can really tell how much this has (hopefully) helped.

Double frenectomies aren't so bad after all!
Double frenotomies aren’t so bad after all!

P.S. – Sorry this was so God-awful long. I need to blog more often, I guess!

P.P.S. – I am sure this is full of typos but it took me an hour to write and I need to go to bed.  No time for double-checking.  :P

17 Replies to “Dysfunctional Suck”

  1. I love finding a good, compassionate doctor. It makes all the difference. I’m so glad you found what that beautiful baby needed!

  2. Sommer, I’m in tears. I’m so glad you got help and I certainly pray that from here on out it gets better! Way to go on getting her the help she needs. I knew you were a fighter, you got this!

  3. If there was a LIKE button for different parts of your post, I’d have LIKED a whole bunch of stuff! Sounds like you found a wonderful doc. Will be praying this helps you both!

  4. holy crap, i just cried reading this..SOOO happy there is a light at the end of the tunnel and that means a happy boob suckling Shiloh! :D

    fantastic blog post today!

  5. My la leche league leader just sent me your article, and gave me O’Hara’s number. I’m so happy that you got help and shared your story! I was afraid no one in our town would confirm my research and my daughters mouth, and then I thought I would never find some one to correct it. I feel much more comfortable driving to Seattle to have his done. Thank you!
    and I’ll gladly use dick in place of dougebag!

  6. THANK YOU for posting this. I am having nearly identical problems with my 6 week old and it has been nothing but misery for the both of us. I have suffered mastitis, blocked ducts, and milk blisters because of an improper latch and my kiddo has *also* never had that “milk drunk” look in her eyes. She’s been struggling off and on for six weeks to feel satiated. Ugh. This post is giving me the courage to call Dr O’Hara and schedule a procedure and possibly get this all taken care of in just a few minutes. THANK YOU for your thoroughness and your bravery and honesty. All the best to you and Shiloh!

    1. I am very glad this has helped you! Dr. O’Hara is AMAZING! Shiloh is now 20 months old and while breastfeeding never was really great with her, we made it 18 months. Best of luck to you!

  7. Thank you so much for writing this!! I have been going through the same exact thing you did. Just yesterday I was at the ENT’s office when he told me he wouldn’t do it and to “figure out how to deal with your issues” and I too cried my way home because he’s the 4th person I have been to. Fortunately for me my baby girl is only a month old. I am giving Dr. O’Hara a call today after reading this (I live 2 hrs away from Seattle) so thank you so much for writing this! I feel like I will finally get the help I need!!

  8. I’m so glad I came across this post. When my son was 3 days old, I knew something was up with my sons latch. Although he had a strong suck, something wasn’t right and I was starting to get blood blisters. I looked and could see a lip-tie and tongue-tie – finally got an LC and the hospital pediatrician to take a look and they all seemed non-committal about it. By 4 & 5 days old they were concerned about his lack of weight gain since he lost so much in the hospital. Then I started my research to find someone to do the revisions – I clearly needed to be an advocate and make something happen instead of sit by and watch the LC’s put me on a “pumping plan” like they did with my daughter. My husband seemed uncomfortable and unsure about the need to have the procedures done. In my research to find additional info on Dr. O’Hara, I came across this post. Not only did I make me so happy to hear about such a positive experience – your story is what gave my husband the comfort he needed to know that this was the right thing to do for L. L will be 11 days old when we go in to see Dr. O’Hara this week. Thank you soo much!

  9. Thank you so much for sharing your story. My baby is 2 months old now and I’ve known he has an upper lip tie since the beginning, however none of the providers we have seen have validated my concerns. I plan on calling dr. O’hara first thing in the morning.

  10. Thanks for this! I saw Dr. O. six years ago with my son after a long, long journey of seeing many different practitioners, and I feel exactly like you. She is wonderful.

  11. Thank you so much for this story, this is exactly what i’m going through right now, age, sns, everything. It made me cry but I am so happy to know that when I can get in to see Dr Ohara she should be able to help.

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