The End of the Tale and the Real Issue!

We are Tongue Tie Survivors!! In this house, that is certainly something to celebrate.

If you haven’t already, take a few minutes and read about our breastfeeding struggles, posterior tongue tie diagnosis and tongue/lip tie revisions.

After our revision procedure (performed by the amazing Dr. Lawrence Kotlow in Albany, NY) we were told that because of Lucas’s age and need for extensive CST/OT thing may get worse before they got better.  I hoped and prayed that wouldn’t be the case.  Unfortunately, it was.

Lucas’s procedure was done on a Thursday afternoon.  By Monday morning things were worse than before.  My child was screaming at the breast.  We were still using the nipple shield.  My supply was tanking.  Lucas was dropping weight faster.  We went to our local hospital’s Breastfeeding Support Group.  The LC  told us Lucas had a “weak suck” and was going to have to learn that all over again – at 12 weeks old.  To say I was a total mess would be a huge understatement.  I just wanted to feed my child!

My LC, the amazing Mary from Milky Cheeks was at my house the next evening.  We worked on Lucas’s latch (which she said still looked good), we did some sucking exercises using our fingers, and she promised me using the nipple shield wasn’t the end of the world.  Most importantly, she encouraged me.  I will be forever grateful for her kind words and encouragement that evening.  She may not realize it, but what she said kept me going.

We had our first therapy appointment that morning as well.  Lucas’s Frontal Fontanelle was mis-shappen.  Partially the cause and effect of our feeding issues and partially (or at least the doctor thinks) because of his “unique” delivery.  **Note to self: must blog about my birth story, which involves my son delivering himself with no one there to catch him AFTER a nurse tried to “push him back in”!**  We were scheduled for three or four therapy visits weekly.  This momma was stressed just thinking about it!

The next morning (so the Wednesday after our Thursday revision) Lucas got up extra early.  I decided to try and nurse him in bed.  I put on the nipple shield and he wouldn’t latch.  I tried several times and then finally, out of frustration, took that silly piece of silicon off and tried to latch my son again.  IT WORKED!  My son was nursing, without a shield and I wasn’t in excruciating pain!  I began to cry! I sat there, in my bed, at 4:30 in the morning with my husband still sleep and cried tears of joy!

As the day went on, each time I fed my son it got easier and easier. By the next morning I can honestly say that things were 100% better!  I was still taking supplements to boost my supply but even that was coming back and then some!  Therapy was hard; Lucas cried every time I gave him to the doctor but I could tell that it was working!  By the next week he wasn’t crying at therapy and we had the breastfeeding relationship I had always hoped for!

A few weeks later I was weighing Lucas for his 4 month chalkboard photo and started crying (again! I’m still blaming the hormones!!).  In one month’s time my son gained 2.5lbs!  I was beyond excited.  I also got hit by the Mommy Guilt Mac Truck when I realized my son had been so hungry in those first few months.  I still live with that guilt and some days it gets the best of me.  But then I remember everything I did, and am still doing, for my son and I give myself a pat on the back for trusting my instincts all those months ago.

Speaking of the Mommy Guilt – we need to have a conversation about that soon because I know it’s plagued me and as a MommyNation we need to stop!  But I’ll get off of my soapbox now and finish this story that has taken over a week to tell!

Lucas is still seeing the therapist once a month, just to make sure the exercises we’re doing are still needed and working!  I also still freakout at the slightest hint of pain when he latches or the first sign of a plugged milk duct but, as of August 15th, I am proud to say that my son has been exclusively breastfed for 6 months with no signs of stopping!  We are so blessed to have had people in our lives that were able to help us correct what could have been an even bigger issue.

And that’s the real problem – lack of education regarding tongue and lip ties in the medical community and the “solution” of just giving your child a bottle.  I am of the school of thought that “breast is best” but I never have and never would say that there is anything wrong with bottles and formula! Every family has to do what is right in their situation.  My anger (yes anger!) comes in when all of these roadblocks exist in helping a family create a feeding situation that they want.  If a family wants to breastfeed and they are having these issues they shouldn’t have to fly from North Carolina to New York to get they help they need and want.  They also shouldn’t have to wait until their child is 12 weeks old, not gaining weight and being threatened with a  Failure to Thrive diagnosis to get answers!  I know that Lucas was a special case with a very difficult to diagnosis (and correct) tie.  And I respect that a lot of doctors will not preform that revision on a small child but my thinking is if they had more education and experience, they would.  My goal in this four part, very long (kudos if you’re STILL reading!) post was to shed some light on a topic that a lot of mothers aren’t even aware could be an issue and to let them know that help does exist and success stories are out there.

And now, because I don’t want to scare you away with my crazy rant, here is six months of super cuteness for you to enjoy!  I promise this blog will be a fun place and one to share and laugh and learn – not just listen to me rant about one thing or another!  Anyway – back to the cuteness!

Lucas1-6-1

So now that I’ve shared our tongue tie story I’d love to hear yours!  Post in the comments below.  Did you escape the curse of the tongue tie?  Just share a super cute story about you or your little one then!

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The Man Who Fixed a Tongue

For the first 11 weeks of my son’s life we had some major issues breastfeeding, which led to some weight gain and health issues.  If you’re playing catch up, you can read about that here.

After research and some insight from amazing women in my life (it takes a village, remember!) Lucas was diagnosed with a posterior tongue tie, a lip tie and a bubble pallet.  A pretty comprehensive list of tongue tie symptoms can be found here.

Our pediatrician gave us some not so amazing advice and told us it would be hard to find someone to correct the issue locally.  After a lot of internet research we kept hearing the name Dr. Lawrence Kotlow, a pediatric dentist in Albany, NY.  Not only was Dr. Kotlow highly regarded when it came to the revision surgery needed to correct a tongue tie, but he was a huge supporter of breastfeeding and correcting oral issues that can inhibit breastfeeding.

I made a call to his office in Albany and within 24 hours we had an appointment, plane tickets, a rental car and a hotel room.  My mother, Lucas and I were on our way to Albany, NY the following week.

The plan ride was interesting, but I’ll save that experience for another day!

When we arrived at Dr. Kotlow’s office (which is incredibly kid friendly!) his staff was waiting for us.  I’m going to be perfectly honest, I was a wreck!  I was about to give my child to a man and have to sit and wait while my 12 week old had his tongue sliced with a laser.  The office staff made me feel so much better!  After a brief wait we were brought into an exam room and asked to watch a video regarding tongue and lip ties.  As I sat and watched this video I KNEW Dr. Kotlow would confirm we did, in fact, have a posterior tongue tie and lip tie.  Once the video was over Dr. Kotlow came in and did a brief examination of Lucas’s mouth.  It only took a few seconds for him to let us know that Lucas had both a posterior tongue tie and a lip tie.

The next part was so hard for me as a first time mother.  I kissed my little baby and gave him to the doctor to be taken for the revision procedure.  I honestly can’t tell you how long it all took – I sat in a room crying thinking of the pain Lucas must be in.  I kept reminding myself of the articles I read about Dr. Kotlow and how babies were returned to their parents happy and without tears.

Unfortunately that was not the case with my son.  When he was eventually brought back to me he was STILL screaming.  I knew I needed to get him to the breast immediately but was nervous for so many reasons: Would it hurt him? Would it hurt me?  What if this didn’t fix anything?

I took my crying baby and put him to the breast and I could instantly tell a difference! It didn’t feel great, but it certainly felt 100% different and so much better!  I started crying again, different tears this time – tears of relief and joy!  Dr. Kotlow came in to check on us and as a sat there crying and thanking him for fixing my son that wonderful man started wiping away my tears (my hands were a little full at that moment!). He did mention that Lucas was probably going to need a fair amount of Cranio-Sacral Therapy/OT and that, because of his age, breastfeeding may actually get worse before it got better.

We staying in his office for a while longer.  I spent some more time nursing Lucas, we got a list of instructions on how to exercise his incision and to care for them in the upcoming weeks and then Dr. Kotlow gave us his cell phone number and said that if we needed anything to text him.  I have never heard of a doctor giving you their cell phone number to text if you had questions, but I knew in that moment everything I had read about him was 100% true – and then some!

Lucas did pretty well after we left the office.  He slept most of the afternoon and pretty much the whole night.  I could tell he had a fair amount of discomfort pain and he had a lot of swelling but the Tylenol we gave him really seemed to help.

I was over the moon excited when I woke up in that Albany, NY hotel room the next morning!  Little did I know that our saga wasn’t over quite yet!

Has your child had a tongue/lip tie revision (or a procedure of any kind)?  How did it go?  Share your stories with other parents in the comments!

The Diagnosis – Posterior Tongue Tie

Welcome back faithful readers (yes Mom, I realize it’s probably just you!)

In case you missed the first part of my story, you can find that here.

The Cliff Notes version, for those who’d prefer it:  Lucas was born early, we had a lot of issues breastfeeding, he was diagnosed with a bubble pallet, he was eating constantly and causing me a lot of pain, we were told he was a fussy baby and to limit how much I was feeding him, he stopped gaining weight at the rate that was expected, and mommy kept getting blocked milk ducts.

Cue the amazing women on a Mommy Group Board I’m a part of and my mother.  The theory – a posterior tongue tie!

Once we came up with this theory I started doing a ton of a research on the subject.  Here is what I learned:

First, posterior tongue ties can be extremely difficult to diagnose. Because breastfeeding became less popular than bottle feeding many years ago a lot of pediatricians are not skilled at discovering anything other than the obvious “snake” tongue or “1 and 2” tongue ties.  **Oh, I should mention there are 4 “levels” of tongue ties.  The first two are very obvious and easy to see, the 3rd and 4th are considered posterior and make diagnosis difficult. 

Second, tongue ties and lip ties are considered hereditary.  My brother had a tongue tie that was clipped as a baby as well as a lip tie that was not corrected and my father’s brother still has a pretty significant lip tie.

Third, tongue ties, lip ties and bubble pallets are typically related – meaning if you have one, there is a good chance you have another.

And fourth, in order to breastfeed correctly, babies need full movement of their tongue – they need to create a seal around the nipple, preventing slippage, and proper drainage of the breast. A tongue tie prevents this – hence the pain, low weight gain and even plugged ducts you’ll see below.

The one thing I noticed, I got the best information on blogs from other mothers who had experienced something similar to me.  Like I’ve said before, that was the inspiration for this blog – to share my experience and hopefully help other moms and babies create a better breastfeeding relationship!

So what are these tongue tie symptoms?  I’ll highlight the ones we had in an effort to save you from reading too much!

  • Sore, damaged, cracked nipples that do not go away after the first few weeks of breastfeeding
  • Mis-shappen nipples after feeding (flat or pinched typically)
  • Frequent feeding
  • LONG nursing sessions – an hour or more at times!
  • Slow or no weight gain or excessive weight gain (quick explanation – because baby is eating all the time and constantly getting the high calorie foremilk they can gain weight excessively but if feedings are “limited” like was suggested to us they will not gain weight or begin to lose because they aren’t getting enough food)
  • Reflux
  • Hiccups
  • Fussy at breast
  • Tense and unable to relax when feeding – think clenched fists, tension in head/neck, etc.
  • Colic
  • Baby only takes short naps and never sleeps peacefully
  • Cannot maintain a seal on breast/bottle – a lot of leakage
  • Infrequent swallowing
  • Constant need to suck – at breast, on a bottle, paci, fingers, etc.
  • Mastitis or recurrent blocked milk ducts
  • Supply issues
  • Nursing blister on baby’s upper lip
  • Green stools
  • Unable to maintain a latch at breast
  • Noisy feedings – baby makes clicking or popping noises at breast and bottle, loud swallows, etc.
  • Excessive gas
  • Gagging
  • Weak or lazy suck
  • Baby falls asleep when feeding constantly
  • Snoring when sleeping
  • Scoop in the tongue
  • Unorganized suck/swallow pattern – doesn’t suck/swallow but rather you get suck, suck, suck, swallow, breathe.
  • Excessive drool (not related to teething)

Obviously we had a lot of things going on so I wanted to get into the pediatrician right away!  I was pretty sure I had figured out our issue but I needed confirmation and a solution.

We had an appointment a few days later and the pediatrician said it did “look like a tongue tie” but that she “wasn’t an expert.”  She did commend me for sticking with breastfeeding for 11 long weeks of pain.  Here’s where the story gets ugly…I was told that she has never once referred anyone to an ENT for a revision of a tongue tie.  In fact, she didn’t even know where to send me.  She said that because I was obviously committed to breastfeeding and that I would not be okay with switching to bottles she would refer me.  She also said that the ENT probably wouldn’t do anything though.  She was pretty sure no one in our town would do a laser revision on a 4 Posterior Tongue Tie.

I was encouraged and frustrated at the same time!  Thanks for telling me what’s wrong with my child but there is no solution?  I was also told that because of his weight gain (or lack there of) I needed to start offering him a bottle of pumped milk after every feeding – so that meant I needed to start pumping after every feeding!  Thankfully I still had my hospital grade rental pump!

As I was driving home from the doctor I made the decision to call Dr. Lawrence Kotlow’s office in Albany, NY.  All of my research on posterior tongue tie revisions had led me to him and I knew that he would be able to help.  Within minutes I was on the phone with a wonderful office assistant who told me that yes they would be happy to assess my child and preform the oral surgery if Dr. Kotlow believed that was best.

That night we booked our plane tickets and the 6 day wait began!

What to know what happened and what I think of Dr. Kotlow and his office staff?  Check back for the next installment of our Posterior Tongue Tie saga!

Any other moms think their child has (or had) a tongue or lip tie?  What symptoms did your Little One have?

**I am not a lactation consultant and am just presenting the symptoms of a tongue tie as they were presented to me (in my own words of course).  If you suspect your child has a tongue or lip tie please consult an IBCLC or your pediatrician!

My Struggle With Breastfeeding…

My son was born 16 days early after I was induced due to pre-eclampsia.  The labor and delivery was pretty easy…And then it came time to feed my son.  We did okay breastfeeding at first but began to have some issues as the hours went by.  I cannot tell you the number of Lactation Consultants that came into my hospital room.   We even got an extra nights stay in the hospital so we could get more one-on-one help.

Two weeks in and I was in a world of pain!  I honestly believed that if spy agencies used breastfeeding as a method of torture there would be no secrets left to tell!

I kept calling Lactation Consultants until I found one that was able to see me right away – something needed to be done because there was no way bleeding, cracked nipples were normal!  Mary came by our house the next morning ready to help.  Our latch looked good so she checked out his mouth.  She immediately diagnosed him as having a bubble, or high, palate. My son would not let her get a good look under his tongue but I had been told in the hospital he did not have a tongue tie so we didn’t think that was the issue.

Because he was a late pre-term he lacked buccal fat in his cheeks – so, along with the bubble palate, we thought we had found the issue.  I began using a nipple shield and was told that in a few weeks, when the fat started growing in his cheeks, nursing would get better.  From that point on our lives were dependent on that silly little piece of silicon.  I couldn’t go anywhere without it – in fact, I got nervous if I didn’t have one immediately within arms reach.

Lucas was also eating pretty constantly – if he went more than 20 or 30 minutes without eating he’d start screaming.  He was also eating for about an hour at a time.  He was constantly falling asleep at the breast and I would have to pat his little bum to get him to keep eating.  My life revolved around breastfeeding.  I didn’t mind it, but I had friends with babies only a few weeks older and that was NOT their breastfeeding relationships.  I tried to remind myself every baby was different, but something just didn’t seem right.  I had cut out EVERY type of gassy food I could think of, stopped eating dairy, tried gas drops and gripe water – nothing seemed to work but latching my son back on.

I finally called the pediatrician out of frustration and they scheduled an appointment.  They asked about my supply, thinking I may not be making enough milk, but I was pumping 4-6 oz AFTER feeding him in the morning so that was ruled out; my son didn’t spit up so they ruled out reflux, the breast did calm him so they said it wasn’t true colic.  After 20 minutes I was told I had a fussy baby and I was feeding him too much (He had gained 1.2lbs in about 2 and a half weeks – but remember he was eating constantly).  I was told to only feed him for 15-20 minutes per side and then wait at least 2 hours before feedings.  The pediatrician said that the first few days would be rough but that my baby would “adjust.”

Something about that advice just didn’t seem right to me but I thought, “Hey, this lady went to school for this and I didn’t so I guess we’ll give it a whirl!”  Those next few days were torture.  I’m pretty sure there is video of my husband and I with the baby in the kitchen with the microwave fan on, the water running, us “shhh-shing” and squatting with our 8 week old.  Those videos will certainly be used against us at some point in the future! After two days I knew this wasn’t really working and started to feed him more frequently again but not constantly.  We began giving him bottles at night and he’d chug 5 or 6 oz if we let him.  He made such funny noises when he’d take the bottle (another red flag we totally missed by the way!).

After a few weeks of this I began to notice that he wasn’t gaining weight as well as he had been.  He was still gaining okay, but not nearly as well as in the past.  I had also began to have the most horrible pain in my breasts, which I eventually realized was blocked or plugged milk ducts.  Literally every two or three days I’d be in the hot shower, massaging my breast and pumping like crazy.  I even began taking Lecithin (which does help with plugged ducts in case you were wondering!).

Finally, after posting all of this on a Mommy Group board that I belong to one of the women suggested a posterior tongue tie.  My mom, who is amazing and was doing her own research, came up with that same theory.

Were these wonderful women right?  How exactly do you diagnose a posterior tongue tie?  Since this post is getting very long (and because I want to keep you interested – hey, I’m honest!) we’ll save that for tomorrow!

If you breastfed, what were some issues you faced?  Would you breastfeed again if you have another child?