Monday, April 23, 2012

My Breastfeeding Journey

DISCLAIMER: This post is very personal, and filled with way more information than most people should know or want to know.  However, I'm writing and posting this in case it helps some other new mother get through their breastfeeding challenges and helps them feel not so alone.

If you are a woman needing some encouragement, go ahead and keep reading (but be forewarned that this is very long).  Men, please skip to the next post.

My main purpose for writing this is because I felt very alone in what I was experiencing.  None of my other friends could relate, although they tried to be encouraging. Everyone else said it got better for them by about 4 weeks.  Not so for me, but I made it through. Here's my story in case it helps someone else...

September 2009: Jason and I are sitting through a breastfeeding class taught by a La Leche League Leader. We were anxiously awaiting the arrival of our first boy, Lucas.  I wanted to take this class so that I knew the best positions to hold my baby, how often to feed my baby, the best ways to store expressed milk, etc. I remember the instructor mentioning that only 1/4 of the women in this class would continue breastfeeding after the first couple of weeks.  I thought, "Why would they quit? It's the most natural thing in the world.  Baby's hungry.  God designed a woman's body to make milk.  What could go wrong?"  I never put myself in the "quitter" group, because I didn't see what was so hard. Put baby to boob; baby drinks from boob.

October:  My rude awakening came.  Lucas latched on just fine.  The lactation consultant (LC) in the hospital told me I had perfect form (because of course, I'm a perfectionist and tried out all the positions with a baby doll :). Well, after Lucas latched on perfectly, he sucked a couple times, pushed off with very strong newborn arms, and screamed.  I needed help getting him back on (and, of course, in the middle of the night, my husband is sleeping like a log on his cot, so I have to page a nurse).  I had very bad nipple pain once I did get him to stay on.  The LC said he had a high palate and was using his tongue backwards, the combination of which was going to hurt me. We tried a nursing supplementer (a tiny feeding tube with one end dipped into a bottle of formula, and the other end against my nipple and in his mouth). It slowed his tongue movements down so it didn't hurt so bad, and so he didn't get so frustrated because he wasn't getting much from me. Well, I felt a little better about going home and doing this myself (although I quickly got frustrated again at home. Note: keep visitors to a minimum for a few weeks; the stress will hurt your milk supply and make experimenting/relaxing with breastfeeding difficult).

I had received a booklet in the breastfeeding class, that gave me all the knowledge I could ever want (or so I thought). It said babies eat every 2-3 hours and were born with marble-sized stomachs (that initially only held about 10-15 mLs). I assumed that since I just fed Lucas an hour-and-a-half ago, he couldn't possibly be hungry, even though he was rooting and fussing; so I made him wait. We went to his newborn appointment 2 days after we can home from the hospital, and he'd gone from 9 pounds to 8 in the first 4 days. The pediatrician basically told me I needed to throw that book out (newborn stomachs grow a LOT in the first few days) since I was starving my baby. I felt awful!

I started trying to nurse him more frequently (or use a nursing supplementer to finger-feed him because my nipples were cracked and bleeding). The pediatrician told me to go see a LC, and he wrote a prescription for it with an indication of "insufficient weight gain" (so hopefully insurance would cover it).

Well, insurance didn't cover it, but it made me feel so much better. The LC gave me a nipple shield (Medela's silicone contact shield), which made nursing so much more comfortable, and Lucas seemed to prefer it. She gave me instructions that told me to pump after most feedings to keep my milk supply up and how to wean off of it in a few days.

Lucas wanted nothing to do with coming off the shield, and pumping after feedings was complicated (by this time, family had gone home, so no one was available to hold him while I pumped). I was panicking because Baby wasn't cooperating.

A week and a half after he was born, I had reached the point where I resented my baby. As soon as I was done feeding, I passed him off to my husband to hold. I decided that it was time to stop breastfeeding. I felt like such a failure. My child was going to grow up fat and stupid because I couldn't provide him with breast milk. I cried for weeks whenever I thought about it. (Note: when weaning, don't try pumping less and less frequently... Wear a tight bra and don't stimulate your breasts... I ended up with mastitis on top of everything else).

When he was four weeks old, I read about relactation. I bought Mother's Milk tea and started pumping every 2-3 hours. After a couple days, my milk had picked back up just a little bit. With Jason's help, we tried latching him on with the nursing supplementer. He started panicking and screaming. I felt horrible for trying to force him and never tried again after that. At least I tried again.

While I still feel bad about starving my baby, Lucas is now a very happy, very healthy, very smart 2.5-year-old. Formula didn't kill him :).


February 2012: Jason and I celebrated the birth of our second son, Jackson. I felt much more prepared to breastfeed this time; I knew it was hard work. I was so happy when Jack came out, latched on, and started sucking away!

Day 2 was a different story. Jack started tongue-thrusting (using it backwards), causing sore, raw nipples. The LC set me up with a lactaid (the same nursing supplementer as before) and a nipple shield. She told me that new research showed that pumping afterwards was not necessary, as the new silicone shields allow for much better contact than the older rubber or latex ones (what a relief!).

Jackson had a voracious appetite and never seemed satisfied, so the LC also sent us home with a special needs bottle (simulating the sucking/jaw movements needed for breastfeeding).

After going home, Jack decided he didn't want to latch on to the shield and only wanted the breast (not a bad problem to have, right?). Well, even with the lactaid, he still used his tongue backwards. I ended up with serious cracking and deep scabbing by the time I went back to see an LC a week later. She said that if I didn't let this heal and it got worse, I could have permanent scarring and difficulty nursing future babies. She helped me latch him on with the shield on the left side (the right was far worse). She did before and after weights, then had me pump both sides. I couldn't even get 2 ounces total, when I was supposed to make at least that much. She sent me home with instructions to pump and bottle feed for the rest of the week (to let my nipples heal), finger exercises to train his tongue to move correctly, and to take an herb called Fenugreek to boost my supply. She said the pain can cause a vicious cycle of decreased milk supply, baby nursing for 45 minutes every hour-and-half (and yes, this time I nurse on-demand), and increasingly torn up nipples.

I called her back at the end of the week to tell her that I still wasn't getting 2 ounces with every pump, but that my nipples were almost completely healed. She told me to increase my Fenugreek and nurse with a nipple shield if I wanted.

I went back to see her week 2 because I couldn't get Jack to latch with the shield again, and when I did it hurt really bad. She helped me correct the position of his head, and with pre/post feeding weights showed that I gave him 2.5 ounces. She said I could wean off the Fenugreek (dropping one dose a day).

That Thursday I went to a lactation support group that this hospital had (free LC-assistance). I was a few minutes late, so when I walked in, I saw about 20 women sitting around in a circle with their boobs hanging out (awkward! But after delivery, comparatively nothing...). Once I got over the initial modesty-shock, I found the group really helpful. The LC helped with the shield-latching again, and pre/post weights showed that I'd dropped my supply again. She told me to go back up on the dosage. The group was really helpful, but I was still a little frustrated since no one else seemed to be having my problems with the tongue-thrusting and torn-up nipples.

Sunday, I woke up from a nap and found a knot on my left breast with red streaks... great. I tried using heat, massaging the knot, and changing nursing positions, but it progressed to a low-grade temp and achiness. I called my OB the next morning, and got put on Augmentin for the mastitis.

I started experiencing several other symptoms that made me suspect the Fenugreek had really kicked in and I now had an over-supply. I felt engorged again, had an extremely forceful/painful letdown (the milk actually sprayed), Jack was gulping and sputtering, with milk leaking out of the side of his mouth, and of course I had clogged ducts (with one of them ending up in mastitis).  I weaned myself off of the Fenugreek, and when I went to support group that Thursday, I had given him 4 ounces! (FYI, whenever I tried pumping, I still only got about 2 ounces... the LC told me some people don't respond to pumping well).

March: By the time I got to support group, my nipples and areola were burning, and my already painful letdown felt like serrated knives.  The LC told me I had thrush, and gave me instructions on what to do.  We got a prescription from the pediatrician for oral Nystatin for Jack (even though he wasn't showing symptoms of thrush, both mom and baby should be treated so that it wasn't passed back and forth), to be given 4 times a day.  My OB gave me a prescription for oral Diflucan (Fluconazole) once a day, and Dr. Jack Newman's cream (Nystatin, Mupirocin, and Betamethasone) to put on/around my nipples after every feeding.  Everything that comes into contact with breastmilk (nipple shield, pacifier, breast pump) needed sterilized at least once a day, clothes needed to be washed in very hot water.  From what I researched, fungal infections are not like bacterial infections (you start feeling better as soon as antibiotics were started).  Diflucan only slow/inhibits cell growth/multiplication; it doesn't kill.  The fungus can stay on inanimate objects for a very long time, and can easily be passed through whole families.  (Source found here). I tried to do whatever I could to get rid of it, but the thought of treating this for several weeks was daunting.

2 weeks later, I'm pretty sure the thrush was gone.

One issue I had been having from the beginning was the inability to keep him latched on with a nipple shield, but without it, he wasn't drawing my nipple all the way in, was smashing it flat, and his tongue felt like sandpaper. I don't remember what exactly I googled, but somehow I came across Dr. Kotlow's presentation on tongue-ties and lip-ties and their relationship to breastfeeding (found here). I had no idea that there was such thing as a tight maxillary frenulum (lip tie), or that there were varying degrees of tongue-ties (ankyloglossia). Every single symptom he listed on there we were experiencing (smashed, abraded nipples with open sores and multiple infections; difficulty maintaining latch, marathon feeds with an unsatisfied baby/unemptied breast; air gulping, painful burping, and acid reflux)!! The more I looked at pictures and read descriptions, the more convinced I was that he had a posterior tongue tie (PTT) and one of the most significant lip ties possible (extending over his gums to his hard palate). I had noticed from day one, that whenever he cried his tongue twisted to the right (and that his frenulum looked slightly off-center)... Now I knew what that was.
Jackson (off-center frenulum)
Jackson (labial frenulum)

We took Jack to see an Ears Nose Throat (ENT) Specialist (recommended by the lactation consultants and our pediatrician). I was so convinced he would see what I saw. He had him sit upright on my lap, saw that he could stick his tongue out past his gums, that his frenulum was not connected to the end of his tongue or right behind his teeth, and that he had a strong suck, and he told me he wasn't tongue-tied. I was so stunned, I couldn't think to present anymore of my argument. All I could think to say was, "Aren't there varying degrees?" "Well, sure but I don't think he has it. He just sucked on my finger pretty strong. You said his tongue pulled to the right. I don't think so. It went straight. I think he just needs to get bigger. Give him a bottle and see if it gets better." He gave me a tissue, thanked us for our time, and excused himself to take a phone call. After agreeing that he had a pretty significant lip-tie and that we needed to have that fixed before his teeth came in, he never even followed up with plans for that either. I was so furious, and told Jason I wanted a second opinion. I KNEW what I was feeling and seeing, and I was not about to have a doctor dismiss my concerns and basically tell me I didn't know what my child was doing (or be told to bottle-feed).

The next day I went back to the support group. I showed 2 different lactation consultants, and after putting their fingers in his mouth and hearing what the doctor said, they told me, "I don't agree at all. I mean, I can see why he dismissed you just by seeing his tongue come forward, but I don't agree. You are absolutely right about your assessment, and you know your baby better than anyone else. I think you need to get a second opinion." I felt so much better that at least someone agreed with me. We discussed how, while his tongue went forward, when his mouth was wide open (as needed for breastfeeding) his tongue could not rise upward, but instead pulled to the right. His suction was extremely strong in order to make up for the inability to have proper tongue movement (raising up and moving backward in a wave-like motion, all while cupping the breast). Oh, and his suction was so strong that he was pulling the ends of my nipples through the nipple shield holes (they looked like Lego blocks).

Lucas (heart-shaped notch)
We made a follow-up appointment with another ENT for the following week. This time I was going to be prepared. I took pictures of Jack's tongue and mouth while he was crying (and thus wide open). I also took pictures of Lucas sticking his tongue out all the way. Breastfeeding felt the exact same with him, but I quit after 2 weeks. His tongue has a heart-shape at the end. Oh and I just found out that another male in the family had a complete tongue-tie that was clipped as a baby. I also planned to make this ENT examine Jack laying down (according to Kotlow's presentations, this was the best way to examine a PTT).

Jackson (tight lingual frenulum/"tongue-tie")
This second ENT said he'd never heard of a posterior tongue tie, but was willing to clip it. "It's a quick procedure with very few side effects. We'll never know if it works until we try." I think I started crying right then! He didn't want to clip his labial frenulum, but after just clipping his tongue I noticed a difference. He stopped tongue thrusting pretty quickly, although he couldn't cup his tongue still. Suction was a little gentler, so it felt a little more like a tickle than pain (with the nipple shield).

I was prepared to do a lot of retraining exercises with his tongue. I just wasn't expecting him to refuse them. I started turning them into games, where I didn't force anything other than getting him to allow me to touch his tongue with a little "boop" or "doing" sound. The lactation consultants told me some babies never learn to cup there tongue, while others suddenly catch on around 3 or 4 months. At least he could stay latched onto the nipple shield.

{Update: Jack is now cupping his tongue!  I stopped doing the exercises a while ago because he wasn't hurting me, and we seemed to be getting along just fine.  At about 4 months, I suddenly noticed that my nipple was round when he was done! Yippee!}

2 weeks later, I was frustrated again because he stopped latching with the nipple shield. I tried without it... And it worked! The bottom side of my nipple was still a little flattened since he wasn't cupping well, but it was practically painless (mostly just during the initial letdown, which had always felt like pins and needles to me). He started sleeping just a tiny bit longer, cluster fed to boost my supply, and now I'm nursing in about 30 minutes every 2-3 hours (instead of over an hour, every 1.5-2 hours). Since it no longer hurts and I'm not blistering or cracking, I figure I'll keep trying it this way, and everyday seems to get just a little bit better!

Now, at 11 weeks old, Jack is a happy baby (no longer screaming or nursing constantly), nurses in 20-30 minutes, has gained 2 pounds in 3 weeks (he has fat rolls!!), and I am pain-free and nipple shield-free!  I am so glad that I stuck this out.  I know this may seem pretty daunting to some people, but I wanted to offer this information as encouragement.  Hopefully, someone else can find this story and these links earlier on than I did, and keep asking for help!

((Information on posterior tongue-ties))

Feel free to email me (threegentlemenandalady at gmail dot com), or leave a comment! If you find someone who is knowledgeable or willing to learn about posterior tongue tie, I would love to know! I'll add that person to a list that I will put on my Tongue-Tie page.


  1. Thank you so much for posting this. I have goosebumps and tears bc I know EXACTLY your pain here. Atticus is my first baby but like you with Lucas, I gave up BFing. Unlike you I was thankfully able to achieve relactation and after that FINALLY get his posterior tongue tie clipped after much drama and a very rude ENT at Riley we drove over 2 hours one way to get it clipped in Dayton, OH. Thank you for sharing this and I hope it helps other moms who can relate.

  2. Christine, I am so proud of you! I always doubted when others bottle fed because they said the "baby didnt want to breast-feed". I always secretly guessed that it didn't fit into their schedule because I had never had any problems. shame on me! You are an inspiration, and again I say I am so proud of you and your intelligence and tenacity!
    Love you!
    Aunt Cindi

  3. This is so inspiring. I've been bounced around by lactation consultants, doctors, and breastfeeding specialists. One says he's possibly tongue tied, another says no. I've ruled out acid reflux and oversupply on my own, really. I know he's tongue tied, specifically posterior. I was tongue tied and never clipped, but my mother suffered from multiple bouts of mastitis with me. I've had mastitis three times in his mere 6 weeks. We are both suffering. We have appointments with two pediatric ent's, but only because I begged. First one is this Friday. I am praying that he sees what we are going through and he is able to clip it. I am envious of friends I have who have that peaceful and pain free breastfeeding relationship. It's all I ever wanted since I've have my son. I really wish that professionals in the medical field knew more about this. It's only through my relentless research online and pestering of doctors that I am coming to this conclusion and trying to resolve it. Thank you so much for sharing this!

    1. Cait,
      I am so happy you were able to find this post! I completely understand the frustration and envy when seeing others nurse so effortlessly. It SHOULD feel comfortable and pleasurable. Don't let the ENT's try to convince you to quit if it's really what you want to do. My son and I have an amazing, pain-free breastfeeding relationship now. Have you seen the links and research articles I've posted on my Tongue-Tie page?

      The ENT who finally clipped my son's tongue was a young doctor; he'd only been on his own for a handful of years, so was still willing to accept "new" information (vs being set in his ways). Bring research articles and pictures with you to your appointment. The more prepared you are, the less likely they will be to brush off your concerns. If you don't get what you feel your son needs from these doctors, consider seeing a pediatric dentist. Many dentists seem to be more knowledgeable about PTT than ENT's.

      I hope and pray you get the help you need and peace in making whatever decisions come your way.

  4. I'm so frustrated because we've been to SO many specialists, and no one can help. The ENT hadn't even heard of posterior tongue-ties. I wish I'd known to bring pictures and research, but it never occurred to me that a specialist might not have heard of something in his field! I've found a pediatric dentist who thinks he has one (she first suggested it to me), but isn't confident enough to clip it. A speech pathologist said she thought he fit the profile perfectly (but can't diagnose w/o being a doctor). None of the 3 LCs I've seen have known if it was or wasn't one. Our family doctor has no clue. I can't find any listings of docs or dentists familiar with the condition in our area (South Carolina)... any ideas?

    1. Oh! I'm so frustrated for you, and I wish I could fix it! I found a website with reader-recommended doctors in various states who perform frenotomies (clipping the tongue-tie): Whether or not they are familiar with posterior ties, I don't know. I know some people have emailed or called Dr. Kotlow in NY about their problems, and he's been willing/able to refer them to other ENT's or Dentists nearby. From what I understand, he is extremely friendly and willing to help. At the end of this presentation ( he lists his email and phone number.

      If you find someone, print off Kotlow's and Coryllos' presentations (see my Tongue-Tie page), take pictures of your baby crying, and tell the person you go to to examine him laying down with his head toward the doctor (oh, and if you are brave enough, leave your research with him!).

      I hope this helps, and if you find someone, let me know! I would like to compile my own list of doctors, too! I'll be praying that you get the help you need and peace in making whatever decisions come your way!

  5. I've had the same experiences. I am still nursing my 8 1/2mo with what I believe to be a posterior tongue tie and lip tie. He's getting interested in food now so I will suffer just a little longer (this is what I've said from day one) until he's eating on his own. I want to thank you SO MUCH for sharing. Even though I believe I'm at the end of this it was so nice to here your experience and these other responses. This does get overlooked and even if it is only a small TT/LT it is a huge deal. I know your page will help many moms. Thank you!

    I plan on waiting to see if he has any problems eating, talking, cavities, ect. If so I will check out your list of doctors again and have it taken care of.

  6. this just makes me mad because i KNOW something is wrong and i cant believe no one believes me.
    i had no knowledge of this when my son was a baby, i just know he had a really hard time and though maybe i was just stubborn enough to just keep breastfeeding even if it was hard, im sure now it was from a tie. his lip is so bad it goes all the way back to behind his teeth. he is 7 and im sure we will have to have it cut. my sister had hers cut when she was an older kid too, so its no surprise, but im so frustrated no one knew.

    with my daughter (shes 9 months) i KNEW something was wrong, and i was SURE she was tied, and no one listened, even the lactation person who was on staff. i hadnt even left the hospital with her yet and i knew she wasnt latching right. then she was clicking. it took be until the 6 week to get her referred to ENT and they did clip the lip. argh. she still doesnt nurse right, but i have an awesome supply and letdown praise God.

    however, now shes barely starting solids (i dont mind - baby led solids and all) - but she doesnt seem to be taking them correctly. it just doesnt seem like she is getting food to the back of her mouth, she kinda holds it up in front. im SO MAD that no one listened to me, and that shes still dealing with this, and that my son likely is dealing with it too still at the age of 7. :( :( this isnt fair. all the tongue tie "professionals" arent anywhere near me. the pages ive visited looking for them show NONE in my entire state. that is not fair. why isnt this required education for doctors? i dont understand :(:(:(

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