A Cry For Help.

Ok, internets.  I’m coming to you for help.

I know I said I was through, that I had given up.  But I truly haven’t.  I don’t know if I will ever allow myself to REALLY give up.

So I’m asking you… I’m begging you to help me.  All moms who have breastfed, all mommies who have tried to breastfeed, all lactation consultants and la leche league leaders, all women who have helped a friend, sister, daughter; anyone who knows anyone who knows something about breastfeeding – please help me.  Please pass this on, pass it forward, spread it around.  There has to be someone out there who went through exactly what I am going through, who has any idea, who can help.  I believe there has to be.

I have been blogging about all of our problems breastfeeding since the very beginning, but I’m going to chronicle them all out here, so it’s all in one place.  This is a little long, but I think knowing the whole history is important.

Ruby was born full term in a natural water-birth.  She was skin to skin immediately on my chest and not taken away for the first several hours.  She latched on within the first 30 minutes and began sucking.  She was evaluated for tongue tie and proclaimed “fine”.

Early on, I had glimmerings of an idea that something was wrong.  Ruby would break suction on nearly every suck.  She had huge (I mean MASSIVE) suck blisters all over her lips – but she was growing well and no one else was concerned.  I eventually took her to a lactation consultant to find out if there was something wrong with her latch.  I had a small amount of nipple pain, but it was tolerable.

The first lactation appointment revealed that I had massive over-supply, that was thought to be the culprit of all of our problems.  The LC said that she had never seen anything like it before, because Ruby didn’t even have to suck, she basically just had to open her mouth and let the milk pour in.  After checking for and again ruling out tongue-tie, she recommended that we get my over supply under control, and the rest would fall in to place.  This was also around the time we began our first bout with yeast.

In order to correct my over-supply, I began block feeding. We started with 3 hour blocks and got all the way up to 8 hour blocks before I felt like my supply was under control.  There was no more heavy letdown, no engorged feelings between feedings, and Ruby was actually able to “comfort” suck at the end of a feeding.  But this “normal” amount of milk in my breasts brought on a whole new set of problems.  Over a month old now, Ruby had never had to find herself a good, deep latch; it became very apparent that she had no idea how to do it.

I went back to an LC and had her watch, offer suggestions, try to help.  She said that it was her opinion that Ruby looked fine and that the clicking and suction breaking was just her compensating for my oversupply.  (Oversupply?!  I didn’t HAVE oversupply, I finally had just the right supply!)  So I walked away feeling totally lost.  Nursing had suddenly started to hurt – badly.  Ruby was unhappy, fussy, angry; she would pull away and pinch and yell.

I began reading and trying everything I could think of.  Laid-back breastfeeding.  Only nursing lying down.  Nursing sitting up.  Anything and everything I could think of to get her to nurse comfortably and happy at the breast.  Her incredibly unhappy nursing behavior started right around the time that I returned to work and Ruby was introduced to the bottle.  It became immediately clear that she had severe nipple preference, and wasn’t interested in nursing.  I started pumping to protect my supply and offered her the breast before every single feeding.  It was a battle just to return her to NURSING position – she would scream as soon as I laid her back.  Through a lot of patience, determination and hard work, I got Ruby back to the breast, only not well.  Nursing had really, really taken a turn for the worse.

The pain from nursing had gotten so bad that I made another LC appointment.  I had purchased a nipple shield on the recommendation of many other mommas, and wanted to get some help.  During the appointment it was found that Ruby had zero milk transfer (with AND without the shield) and was happy as a clam as I pumped out 5 ounces of milk and it was offered in a bottle.  No real help or advice to offer me, the LC suggested she may have a weak suck.

Near the 2 month old mark, I read an article online aboutmaxillary labial frenum.”  I pulled back Ruby’s lip, and sure enough she appeared to have the most severe level of lip tie.  I knew immediately that I wanted to get something done about it, but didn’t really have the chance.  My husband and I began experimenting with bottle feeding; different bottles, different nipples, different flows.  We have tried every single bottle on the market that touts the ability to be used in conjunction with breastfeeding – to no avail.  Ruby would nurse if she were REALLY hungry, but not well, not happily, and JUST enough to tide her over until the next time she could get a bottle.

We continued like this for nearly a month when I finally decided it was time to have her lip tie divided.  I called Dr. Kotlow‘s office in Albany, NY because I knew if I was getting it done, I was going to have it done by the leading expert in the field.  We flew to Albany the next day and Dr. Kotlow pointed out to me without a doubt that not only was Ruby lip tied, she also had a very significant tongue tie.  I started crying on the spot, not because she was tongue tied, but really because it felt incredibly good to know that I wasn’t making things up – there really WAS something wrong with her mouth.

Dr. Kotlow clipped Ruby’s lip and tongue ties, and I saw an IMMEDIATE difference.  Her latch was better instantly – minutes after the procedure.  She seemed calmer, happier, more willing to nurse.  The pain I was feeling during all nursing sessions was gone.  She wasn’t clicking or losing suction.  She didn’t seem to be struggling to keep herself on the breast.  I thought we were cured.

And then a new behavior developed.  To my best ability to describe this, it appeared as though Ruby didn’t LIKE the feeling of her new, deep latch.  EVERY time she was offered the breast, she would latch on immediately (she seemed willing and excited to nurse, at least!) but she would bring both of her hands up, place them on either side of the breast, and pull back as far as she possibly could.  She would happily suck with just the tip of the nipple in her mouth, fists clenched deeply in to flesh, and remain that way as long as I could let her.  As you can probably imagine, this was excruciatingly painful and I couldn’t tolerate it for more than a few seconds.  But, if I pulled her hands away, held her closer to me, or did anything to change the position that she was attempting to nurse in, she would immediately begin crying, moaning, fussing, pinching and finally just refuse to nurse.

Ruby and I continued with this nursing battle for nearly 3 weeks before I couldn’t take it any more.  Every single nursing session reduced me to tears.  I would get so hot, and hurt and angry that I couldn’t even look at her.  One day, I finally decided that she NEEDED to eat, so I went and got some frozen pumped milk, put it in a bottle, and I fed her.  I cried, and I cried but I decided we were done.  Nursing her wasn’t working for either of us and it was just causing more heartache than good.  From that day forward, I have exclusively pumped, and Ruby has been bottle fed.

About two weeks ago, I took Ruby to see a speech therapist.  She did a suck evaluation, and tried Ruby on about 5 different types of nipples, with different types of flows.  She determined that Ruby has an uncoordinated suck, in that she doesn’t take any breaks.  She just sucks and sucks and sucks and sucks, with little time to swallow or breathe.  This causes her to have a very urgent, demanding feeling to her feeding.  We began paced bottle feeding and have seen an improvement in her demeanor while she is bottle fed, but there has been very little change in her nursing behavior.  She doesn’t nurse like a normal baby, who will suck, suck, suck, suck, swallow, breathe, rest.  She doesn’t rest.

And this is sort of where I stand.  Ruby wants to nurse, and I will attempt to allow her to occasionally.  She hurts me terribly the entire time.  I have cuts and claw marks on my chest and nipples.  She squirms and kicks and rears her head back.  She PINCHES.  There is nothing I can do to ease her discomfort or get her to relax.  I say I have given up, but I really haven’t; I want her to nurse.  I so desperately, deeply, fully want her to enjoy nursing, for it to become a nursing relationship that makes us both happy.  I want to nurse Ruby until she doesn’t need the milk any more.

I want to nurse.

Please help.  Please send this to anyone who might be able to help.  Please give me all of your ideas and suggestions and advice.  Please tell me even if you think I’ve already tried it.

Ruby is 5 months old.  I’m not finished.  It’s not over yet.  Please.  I need help.

 

 

 

  • http://www.birthconnections.org Tori

    Way to go get it girl. I’ve watched women breastfeed against all odds and fight through so many difficulties. In my observations, it’s a mother’s commitment to feeding her child with the breast that dramatically impacts her ability to do so. I hope that you and your child soon find comfort and peace at the breast.

    • http://www.tempestbeauty.com/about-this-blogger/admin/ Mandy

      Thank you Tori. I desperately hope so too. 😀

  • Eva

    My daughter had similar behavior when I went back to work. She didn’t have any trouble nursing when she was younger though. She would bite, scratch, pinch, and scream and pull away or only suck on my nipple. I decided it was her way of going on a nursing strike. To get her through it, I took a week off work. Then I started by only nursing her when she’d fallen asleep. We’d wrap her the wrap and walk her outside until she fell asleep offer my breast in the wrap or gently ease us into the bed to nurse laying down. while she was awake I was constantly there playing with her without a shirt on. Letting her know my milk was available but not forcing this issue. She could reach for me if she wanted. I read that the key was to making nursing fun and to not let her know it was upsetting when she didn’t nurse. I would pump when I needed and let her play with the pump and me. She seemed more likely to want to nurse right after I pumped. I kept this up for a while and it worked for us. She still has nursing strikes where my whole chest is covered in scratches and bites but I can recognize them and help her get back to enjoying nursing more easily now. I hope you find the answer soon!

    • http://www.tempestbeauty.com/about-this-blogger/admin/ Mandy

      I wonder if that could be what she’s doing… she screams the whole time I’m at work. Perhaps she’s just emotionally frustrated when I’m not there, and mad at me when I am :/ Thanks Eva. Thank you for your support.

  • http://thatswhatbreastsarefor.blogspot.com/2011/05/my-breastfeeding-story.html Christine Emmick

    Mandy,
    I have had breastfeeding issues too, many that you mention and more that you didn’t. I have a few questions and some answers:

    Did you get treated for thrush? Is it really gone? Thrush can make nursing painful for both mom and babe. I used everything from gentian violet, vinegar, grapefruit seed extract, and other herbal remedies, but the only thing that actually got rid of it was Nystatin. :( I applied this once a day for months to keep the yeast at bay.

    My 4th babe would pull back on my breast (and still does) when feeding, clutching my skin with her sharp little fingernails, digging in and pulling back as far as she could. Here is the thing, she knows how best to get the stuff out. While you are experimenting with what makes you comfortable, she is experimenting with what makes her comfortable, and gets the most of the good stuff out, as well.

    When I had thrush this action hurt like hell. I joked about how it was time for mommy torture. I cried as she nursed. I pulled her toward my breast. She’d pull out again, grabbing my breast and yanking it from her face nearly pulling the nipple out of her mouth. When the thrush was treated effectively, the only thing that hurt were her little nails stuck in my flesh. If I kept them clipped short it wasn’t a problem, but if I didn’t she’d leave little bloody track marks on my breast.

    The clipping of the tongue and the lip may have also caused a new inlet for yeast. Any broken skin can more easily get infected.

    Your hard work will pay off, and can I say you are in the thick of it now. You are about to experience a breakthrough. I am now nursing my little 19 month old sweetie and the relationship is blissful (most times at least). Sometimes motherhood is hard, sometimes it’s easy. However it is always rewarding. :)

    My story is at http://thatswhatbreastsarefor.blogspot.com/2011/05/my-breastfeeding-story.html.

    • http://www.tempestbeauty.com/about-this-blogger/admin/ Mandy

      Thank you so much, Christine! I hope we’re near a breakthrough. Thank you for sharing your story as well. I FINALLY feel like we’re getting a handle on the yeast. It’s been a long hard battle, but I just came off of 21 days on Fluconazole, PLUS all of the natural/herbal remedies (GSE, Gentain Violet, Garlic capsules, TONS OF LAUNDRY, and vinegar rinses)… I hope that means we’re out of the woods.

      Thank you so much for your support. It means the world to me!

  • http://bradandbree.blogspot.com Bree

    I am heartbroken for the pain you and your sweet girl have experienced. I am having to wean my 23-month-old son so I can undergo cancer treatment, and I’ve been falling apart thinking of weaning him (we’ve nursed through a cord blood transplant, pumped for NG tube feedings, etc.) because I not only want the immune benefits for him, but can’t bear to lose our precious bonding time. While I’m not in your shoes, I did struggle to nurse my older son, and it took MONTHS to get on track. (He did finally nurse to 33 months.)

    Does your daughter show signs of any sensory problems? It is possible that the sensation of nursing with a deep latch just bothers her? If so, sometimes occupational therapy can help provide some answers, or maybe she needs another kind of stimulation to distract her from the new feeling of nursing. (Or maybe she needs less stimulation?)

    Have you considered taking away bottles and switching to soft-spout sippy cups instead? Do you think that it would make a difference to her? We were afraid of oral aversion post-transplant, and used sippy cups when the speech pathologist wanted him to drink from a cup at 6 months. (We found a NUK one we really liked.)

    Would you consider reverse cycling, where she drinks/nurses mostly when you are home, and then is given pureed fruit or veggies while you work? Do you think you’d have more success waiting to nurse until she’s pretty hungry, or does that only frustrate her? Or would she take an ounce or so from a cup first, then nurse?

    Does it help to nurse her when she’s tired? If so, would you want to wake her early in the morning to nurse, or try when she’s half-asleep at bedtime?

    Is there a speech therapist/pathologist (or a different LC than the ones you’ve tried) who will work with you on the suck-swallow pattern?

    Sorry for the litany of questions. I’m just trying to think of things that I would want to know, and avenues to explore to get help. I hope some of these questions will open up an idea that will be helpful. I am praying for you today, that your baby will latch on and nurse, and that it will be a special time for both of you.

    • http://www.tempestbeauty.com/about-this-blogger/admin/ Mandy

      Oh Bree. You make my problems seem trivial. And I know that isn’t your goal! I just can’t help but feel silly when I know that all I’m trying to do is nurse with no major health problems interfering. Huge hugs to you and your sweet boy.

      Thank you for ALL of your suggestions. I think she must be reverse cycling as we’ve been nursing every 30-40 minutes at night recently, and my husband has noticed she’s drinking less milk while I’m away. I don’t mind – I want her to get most of her milk at the breast 😀

      I’m putting things in motion to get sensory and suck-swallow evaluated again. I very much appreciate all of the questions and your sweet concern. Thank you so much for your comment. I will be sending you love, thoughts and prayers through your upcoming trials. All my love. <3

  • Kate

    That sounds soooo much like my eldest, and my daughter also. I too had the oversupply, the milk pouring in….. You brought back memories.

    What you are now struggling with sounds to me like a very fast letdown? Nothing to do with oversupply, although the two can go together. If you have a fast letdown then the milk will still flood out initially, and the baby has to suck suck suck frantically, gulping, taking in wind. Also… having far too much experience with reflux (all four of mine, my brothers, myself, my dad…..) reflux might be the culprit here too, it can in itself cause swallowing difficulties and desensitise the back of the throat, causing pooling of fluid/solids etc and requiring frantic repetitive swallowing. I’ve written about breastfeeding and reflux on my Blog, here http://musingssahm.blogspot.com/p/breastfeeding-reflux.html

    Hope you get some answers. I so know how you feel. I breastfed twins with severe reflux and multiple allergies for 16 months and every day was a challenge of some sort.

    • http://www.tempestbeauty.com/about-this-blogger/admin/ Mandy

      Wow… thank you Kate. This makes me wonder if Reflux has been our problem all along! Thank you so much, and thank you for your support <3

  • Christine

    You’re awesome to keep going despite all the obstacles and keep looking for solutions! I had problems with extreme over production and my daughter never had to really form a latch because the milk flowed regardless, and in fact she would end up sputtering and choking if I did try to make her latch properly. She always had a tight upper lip and I asked a lactation consultant who said she didn’t seem to have too tight of a frenulum – but it looks just like your daughter’s! I’m now pregnant with my second and my milk supply dropped to almost nothing and she makes all sorts of terrible clicking noises and prefers not to latch deeply, meaning that she must get almost nothing and the sucking never stops now (there is nothing to swallow, I’m pretty sure!) The pain has been unreal so I can only imagine what you have had to go through! I’m sorry that I can’t offer you any advice, but I wanted to let you know that you have enlightened me and I will know what to watch for with the new baby should it have the same problems and to be assertive early on to avoid having the same issues.

    • http://www.tempestbeauty.com/about-this-blogger/admin/ Mandy

      I hope that you have an easier time with your second, Christine. Thanks for your support. <3

  • http://dou-la-la.blogspot.com Dou-la-la
    • http://www.tempestbeauty.com/about-this-blogger/admin/ Mandy

      Jennifer Tow linked this to me a few days ago! I can’t believe how much you guys have had to go through :/ And how similar our problems have been to yours. I hope we experience the success you have. Bless you and your perseverance. <3

  • http://NursingRubySue.wordpress.com Samantha

    Omg! My daughter is named Ruby too. And we are having a very similar problems with nursing. We have come a long way though. I think I have some information and experience that may help you. If u want, you can call or text me. 904-382-3560. She needs to get her palate fixed. The shape of the palate is determined by the tongue. If the tongue is restricted then the palate will be deformed. We fixed My Ruby’s palate by seeing a chiropractor who does SOT work. You also want to feed her well so she isn’t in a fight or flight mode when it comes to eating. Rescue Remedy by Bach Flowers helps us. You need to make sure you find a way to bond with her outside of nursing. It’s more important for you to have a good relationship with her than to nurse her. If you visit my blog, you can read about a lot of this that I’m writing to u about. Hope to hear from you! Will be praying for u!!!

    • http://www.tempestbeauty.com/about-this-blogger/admin/ Mandy

      Samantha! I have read your blog! We actually just saw a craniosacral therapist today who worked on her palate! Thank you so so much for your comment, and for your support <3

  • http://fatio.org Fernanda Fatio

    Dear, I don’t know how to help you but I want to give you some virtual hugs!

    In tears here. My daughter is 2 1/2 years old now. When she was a baby we never got to find a good breastfeeding way and were always struggling to make it work. I went to several breastfeeding clinics here in Vancouver, BC. Tried nipple shield, expressing, relactation system, everything. Nothing worked and she was not gaining weight. By 5 months, she was in the 5 percentile in her growth chart. And then, she totally refused to go on the breast. As it happens to you, she would cry if put on breastfeeding postion and pull away with her arms.

    Today, TWO YEARS LATER, I found out this could be due to lip tie. I always thought it was kind of hard of brushing her front teeth because of that, but thought it was normal because of baby teeth are smaller naturally. She has been to dentist twice and no one mentioned that. I took a few pictures and plan to show it to our family doctor. My only hope is this helps me if I have a second baby since I will know what to look for

    • http://www.tempestbeauty.com/about-this-blogger/admin/ Mandy

      Oh honey… I’m so sorry you didn’t find out. I was in tears when I figured it out with Ruby because no one told us – only there was no one to tell! It hasn’t been noticed before as women had trouble breastfeeding – SO many women have trouble when it shouldn’t be THAT hard. It’s just now starting to be a well identified problem. I, too, hope it helps so much with your future children. Thank you so much for your hugs and support. <3

  • http://plansformotherhood.blogspot.com Ariel

    Oh Mandy. ::hugs:: I know I’ve had my fair of struggles nursing but your post is just a reminder that someone is always worse off. I’m sorry I don’t have any advice but know that I’m pulling for you. Kudos to you for sticking with it!! Prayers coming your way for a continued successful journey!

    • http://www.tempestbeauty.com/about-this-blogger/admin/ Mandy

      Thanks Ariel! <3

  • Amber

    (in all honesty I didn’t read the other remarks so please forgive me if I repeat what others have said. I have four kids calling my name right now but I wanted to leave a message!)
    I think you are doing a wonderful job mommy! I also think that if you can keep trying to nurse her, she will get better the older she gets. I have had many issues with breast feeding, not to your extent, but I have had yeast, nipple sores that left scars, Raynauds phenomenon. I had nipple confusion with two of my babies and a low milk supply due to physical and hormonal issues.
    I am sorry it’s been so hard for you. It’s such a wonderful thing when things go well, but can be so painful and emotionally hard when things don’t go well.
    I had twins about 8 months ago and they were both horrible nurses. My boy was a bit better, but still couldn’t nurse well. My girl was just bad at it. I ended up nursing, pumping, and then bottle feeding. My girl then decided that she liked the bottle better than the breast and would not feed from the breast at all. We didn’t have the extent of your issues, but I kept putting her to the breast even though she fought and fought and fought and would barely even put my nipple in her mouth. She finally started to nurse again, usually only when I was full at first because she didn’t want to wait for a letdown, but now that she is almost 9 months old, she will actually nurse and wait for a letdown. It took months and months for her to actually sit still enough to get a letdown.
    My opinion is that I think you need to keep pumping for her, allow her to be at the breast as long as you can tolerate it, and see if time is your best bet. I also think that letting your baby nurse to sleep may help a bit too. If she will nurse with a little bit of milk, try and pump first, feed her the bottle and if she will, put her to the breast as she is falling asleep. Lord willing she will continue to suck some as she falls asleep, so you get to nurse some, get some stimulation, but she will be more relaxed and maybe she will learn how to nurse better with a deep latch. If all else fails, continue to pump as long as you feel you can. I know how hard it can be to pump when all you want to do is nurse. Pumping at least gives your baby your milk. That is what is best for your baby. Yes, you want to nurse, but giving her your milk, even in a bottle is so good for her! I have had to use formula to supplement our twins and it was so hard at first. I wish I could have pumped enough to feed my babies. I say see the blessings that you have (ie: you have enough milk to feed your baby) and work on the issues as much as you can and relax about the rest. You have done waaaaay more than most mothers would have done so give yourself a pat on the back. Just keep trying to offer her the breast and see hwat happens as time goes by.
    I ended up nursing my first for 30 months even with all the issues we had, it ended up a wonderful nursing relationship. I will pray that things get better for you and that your sweet little ones grows to learn how to nurse well!

    Blessings!

    • http://www.tempestbeauty.com/about-this-blogger/admin/ Mandy

      Thank you Amber! No matter what, I will keep offering my milk – by pump or by breast. She nurses very well at night, so I’m going with it… I nurse her as often as I can while we’re in bed :)

      Thank you for sharing with me, and thank you for your support <3

  • Kerri

    No words of advice, just sympathy. If you decide to remain an exclusive pumper, know that you are in good company with a lot of other women, myself included (former EPer). Good luck!

    • http://www.tempestbeauty.com/about-this-blogger/admin/ Mandy

      Thank you Kerri! It is definitely a labor of love. <3

  • Cynthia

    Hi again, Mandy!

    Just wanted to thank you; because of this article I have identified that my LO has an upper lip tie, just like Ruby did. My ped confirmed it today. I’ll be looking into another “best in the field” here in NJ, a DDS/specialist in Oral/ Maxillofacial surgery.

    Sending continued thoughts and warm breast fuzzies (({HUGS}))

    • http://www.tempestbeauty.com/about-this-blogger/admin/ Mandy

      Aww… Good luck to you Cynthia! I hope things work out well 😀 Thank you!! <3

  • Beth

    I have had different problems (low milk supply), but also similar probs in baby not latching, squirming, crying. I went to 2 lactation consultants, used a shield, supplemental nursing system, etc. We also clipped her frenulum and the piece on the top gum as well. It was extremely difficult for me emotionally to think about my baby not nursing. I am still pumping 5 times a day. It is not easy but I am slowly coming to terms with not nursing. We bond in many other ways now and I know she loves me anyway. I hope things work out for you but if the nursing doesn’t and if the baby is miserable it may not be the right thing for them. I decided if she didn’t like it and it was so difficult for her, then it wasn’t fair for me to expect her to keep doing it. Good luck!!

    • http://www.tempestbeauty.com/about-this-blogger/admin/ Mandy

      Oh Beth. So so so much love and respect for EP mommies. It is so hard! Truly a labor of love. I want to be sure that everyone understands – Ruby does not hate nursing. Ruby loves to nurse. She cries to nurse. She leans into the breast and pulls it towards her. The only person made miserable by her poor nursing skills is me! And I still may get to the point where I only bottle feed anyhow – I have to be fair to myself as well. She hurts me pretty badly :/

      But thank you for sharing your story! I know, no matter what, Ruby and I will have a wonderful, loving relationship. She is my little girl. <3

  • acjjj

    Cannot believe all you have been through Mandy. Wish I had something wise to add to the conversation. I am particularily interested in what the speech path had to say about her sucking and breathing pattern. Did she say why she does this or how you can help her correct or compensate for this?
    Cindy

  • jessica

    I read your whole post and i began to wonder if maybe she had a deep cleft palate or problem in nasal passageway.

  • http://iridescentlearning.org Vanessa

    Hi,
    A recent comment remarked about a cleft palate. You could post a link to the cleft advocate boards: http://www.galists.org/read/?forum=cleftadvocate If that doesn’t work try this link: http://www.cleftadvocate.org/ftfc.html
    It’s a slight possibility. My son, nearly 8 months was born with a bilateral cleft lip and palate. Never able to nurse as he couldn’t latch nor form suction. I have been EPing since birth and when I returned to work in April I could only meet 50% of his needs in a 24 hr period by April. Once a BM donor, I am now a recipient.

  • http://velveteenmama.wordpress.com d

    Vanessa – babies with tongue tie (especially posterior) tend to have high palates because the natural tongue sucking does not drawn the bones down in utero (their tongues don’t reach the roof of the mouth, hence the inability to form a good seal/suckle). Being adjusted helped our son’s higher palate; it’s almost completely back to normal.

  • http://Www.oursmallhaven.com Carrie Holliday

    It’s a little difficult to comment from my phone, but I am so incredibly sorry that you have been through such a tough time. I know your pain, I really do. I also had a water birth with my first baby in March, I dreamed breasfeeding would be so amazing and natural, but we faced so Many of these same problems and the pain of what We were losing was unbearable. I got tired of seeing professionals and not finding help. My nipples were nearly chomped off by his terrible latch, by the time he was only a couple days old I would cry and screech in pain each feeding. We developed a stubborn case of thrush and I finally discovered that my son also had the most severe lip tie, and still does. I also had oversupply issues. I would have bottle fed but my breasts didn’t respond to pumping well at all, so it was formula or nursing, and I just couldn’t let go of my dream of breastfeeding my first baby. I was in such severe pain for months my family begged daily to put him on formula.
    I wish I would have found your blog sooner, I truly felt so alone during that time. I’m sorry to post so much about myself, but I want you to know you aren’t alone.
    You are such a great mama. I wish I had more advice to offer.
    XOXO

    • http://www.tempestbeauty.com/about-this-blogger/admin/ Mandy

      Oh Carrie…. I hate that so many of us have gone through these terrible difficulties. I hate that there isn’t the support out there that we need, or that it costs a fortune. I hate that we don’t find out what we did wrong until it’s too late for us to fix it.

      Hugs, mama. Sending you so much love and support. I’m so sorry it didn’t go well, and I hate that you felt alone. I am here if you want to talk – the grieving is hard. Maybe we’ll have a better time with our next kiddos. Thank you for your support. <3 <3 <3

  • L

    I just wanted to say – I do understand, I am there too. TT, high palate, suspected upper lip tie, been trying and trying for 12 weeks, have “given up”, started again, cried and cried and cried and cried and then carried on crying and nursing. My heart breaks every time I latch him on and I know he’s not getting milk. I have milk and I can’t get it into him without the help of a pump. He wants to, I want to. So very much.

    You are not alone. I wish you all the luck in the world with nursing.

    • http://www.tempestbeauty.com/about-this-blogger/admin/ Mandy

      Hugs mama. II am sending you so much luck and love for as long as you continue to try… and tons of support when you find that you can’t do it anymore. Maybe we’ll both get it figured out. Maybe we wont. At least we’re not alone. <3

  • MaggyD

    Oh, my! I just wanted to send good wishes, and tell you that you are doing a good job.

    • http://www.tempestbeauty.com/about-this-blogger/admin/ Mandy

      Thank you Maggy 😀

  • http://wonderlove.org katie dunning

    wow what a wonderful trooper you are! i am an IBCLC and a mom to 3, one labial tied(just like i was till a faceplant off a rasecar trailer split it. i had to nurse my eldest in a hold with his chin so deep in my c cup breast it was odd looking to keep his upper lip as away as possable. i also found it improved adter he got his front teeth(the dentist wants the cut labial frenulum because it is making his front teeth cross,he is 14 y/o now (and weened,ha ha) so i will let him deside if he wants it cut.
    my 2nd kid was autistic has sensory issues but was an exellent nursed, i truly think it was his saving grace, he nursed every 2 hours day and night and it was during nursing and for afew minutes after that he really interacted with the would, then he would withdaw back into himself.
    my 3rd and final kid was a classic tongue tie(no joke) apearently i needed to leard from experience to help others.
    i also pumped for several years for varied reasons.
    i sure hope you acheive pain free nursing a mom in our LLL group finally did after nine months of damaged nipples then yeast then raynauds, we had a celebration for her, i cant imagine not commending that achievment

    my best advise is be kind to yourself, allow others to mother you and if you need me i am listed leader for la leche league of central kitsap wa.

    • http://www.tempestbeauty.com/about-this-blogger/admin/ Mandy

      Sometimes I think that’s what is happening to me. I’m going through this terrible ordeal, this frustrating experience in order to be able to help other mothers.

      Thank you so much for sharing your experience, and for your support. I really appreciate it. <3

  • http://www.breastfeedingandparentingsolutions.com Patricia

    where are you located?

    • http://www.tempestbeauty.com/about-this-blogger/admin/ Mandy

      Charlotte, NC!

  • http://www.karengromada.com Karen Gromada

    I’m not sure who’ve you’ve seen, but there are some well-known and well-thought of IBCLCs and LLLLs in the Charlotte, NC area. I’m not going to name names on a blog list but you are welcome to get in touch via email.

    Hang in… You are an amazing mom doing an amazing job on your amazing, albeit bumpy, journey!

    Karen G

    • http://www.tempestbeauty.com/about-this-blogger/admin/ Mandy

      Thank you for this offer, Karen! I will email you shortly! I appreciate the support. <3

  • http://creebreastfeeding.com Dany

    Hi Mandy,
    I was sorry to read about the troubles you are going thru. As a mother I have had my share of troubles myself and I admire your determination.
    I feel you very much want to breastfeed in a manner we think breastfeeding should be. In your case, for many different reasons that I do not think relevant to go back to at this point, it was not possible to breastfeed like “everyone else’. It was never an easy breastfeeding relationship. You mention that your baby is now 5 months old. With this information, I see so many new and wonderful opportunities for you and your baby. You also mention that your baby breastfeeds nicely and quietly at night. When I put these 2 facts together with the upcoming solid introduction that is done at around 6 months of your baby’s life, I foresee that you can have quite an enjoyable time from now on. You must know that many babies are in daycare ( I am not promoting it, just using this info,,,). All day, while their mother is not present, those babies eat solids, drink some water, expressed breastmilk, etc. from a sippy cup and breastfeed only once their mother returns. I mention only cups here because those babies drink only to thirst during the daytime. They conpensate in the evening and at night by breastfeeding at thier mother’s breasts. This is a breastfeeding pattern you could introduce even if your child is not in daycare and is always with you.
    To me, the goal here would be to take away all breastfeeding sessions where it is not pleasant. If it is only enjoyable at night, then OK, let’s concentrate all the breastfeeding at night and do no breastfeeding during the day: only a cup and the solids your baby will be introduced to progessively. The amount of solids should not be more then any other baby would take, but you could choose to make them more “liquidy”, as in soups, or adding water or expressed breastmilk to most of them.
    In my opinion, there is no use to reminesce about what is past, but there is so much to look forward to in the future. The bond and relationship you develop with your baby takes root very early and it needs to be an essential element. You are doing great. I hope my 2cents can help.
    Dany G.

    • http://www.tempestbeauty.com/about-this-blogger/admin/ Mandy

      Thank you Dany! I have actually found that Ruby has been reverse cycling, and we’ve been doing much more nursing at night than we previously had – and I’m okay with it! The more milk she gets at the breast, the better I feel. I also think there is a chance that she’s subconsciously learning that nursing is okay. :)

      Thank you so much for your comment and your support. We are still making it!

  • K. Jean Cotterman

    I am amazed at all you and your little one have gone through, and hope that any lessons learned can help some others benefit by avoiding some of the uphill journey you have had. I have only questions-not answers. Is your little one perhaps trying to protect her airway? Like being tense and frightened from having connected the expectation of again being sort of under Niagra Falls each time she starts to nurse?? I wonder if this might be connected with her frantic behavior you have described at the breast, as well as the night time nursing difference. Perhaps gravity is slowing the speed when you lie down, as the side-lying position is more of a neutral gravity, or “equal” gravity of the level of milk flow from the breast into the mouth. It makes me wonder about anti-gravity positioning and whether that might make a difference in your baby’s need to struggle so at the breast at other feedings. Is there a possibility there is a hidden cleft in the soft palate somewhere that could be making a difference in the ability to make a vacuum, or allowing milk to leak into the airway in such a way that your baby feels “waterboarded” in some breastfeeding positions?

    Best wishes to you both, and thanks both for your perseverance and your willingness to blog about this in order for the rest of us to learn, so we are better prepared to help others.

    • http://www.tempestbeauty.com/about-this-blogger/admin/ Mandy

      Thank you for your support!

      I think it’s entirely possible that she’s remembering feeling frustrated from heavy flow. I know when we lay and she nurses better, it’s only while sleeping – her frantic, frustrated behavior is present even when laying if she is awake while nursing. It makes me more and more sure that it is a learned behavior or a habit that it may be possible to break.

      I have been asked about a hidden cleft before, and I am not sure! How would I go about having her checked for something like this? Is it something I may be able to see or find for myself? Since she had a tongue and lip tie, which is a midline defect, it’s possible she would have others.

      I appreciate your support and your comment so very much!

  • http://NA Lee Galasso, MS, LLLL, IBCLC, RLC

    Mandy – My heart breaks when I read stories like yours. I send you a big e-hug. When you had the frenulums clipped, were you instructed on how to prevent re-attachment? Recently, I learned how the exercises should be done for the lingual frenulum; I don’t know if it is the same for the labial frenulum. The IBCLCs referred to by Karen Gromada might be helpful in both those cases. After the clippings, Ruby might have benefitted by fingerfeeding so that you could use exercises to help her relearn how to suck correctly; again those LCs could help with that. The baby may be frustrated by the now-free tongue that does gymnastics all over the place but does not know how to move correctly. If the milk flow is hard for Ruby to handle, you could express some milk until you have the milk ejection reflex and then let the flow slow down before putting Ruby to breast. You also could try the Laid-Back position (look up Biological Nurturing by Suzanne Colson on the internet), where the baby would be on top of your chest and the anti-gravity might help. Frequent feeding (every hour or so) might help by keeping your breasts from getting too full and gushing like a garden hose. I would be so happy for you if any of this helps. Hang in there – It is worth all the effort. Best wishes to both of you.

    • http://www.tempestbeauty.com/about-this-blogger/admin/ Mandy

      Hello Lee! Thank you for your comment!

      We surely did the stretches and exercises for her lip frenulum and the lingual frenum – however, she still has some degree of tongue re-attachment. We will be addressing it soon. I would like to know more about helping her before and after her tongue is re-clipped, so I have secured a copy of “Supporting Sucking Skills”. I’m excited to read it.

      I have tried and tried laid-back breastfeeding, and it does nothing to ease her frustration. To my understanding, if the flow of milk was the problem, there would be some point during the nursing session where her attitude would change – either during letdown (if flow was too slow) or after letdown (if flow is too heavy). Her behavior doesn’t change with change of flow. I’m about to post a video (in just a few moments!) of what a typical nursing session is like for us. I would love it if you could watch and give your opinion?

      Thank you so much, again, for your help. :)

  • http://www.lifecirclesnecklaces.etsy.com Lori

    HUGS. I hate to hear you and Ruby have had such a rough time. You have so much dedication and obviously care so much about being able to breastfeed. Kudos to you for putting so much effort in when too many mothers would just give up. I had problems breastfeeding initially because my nipples are kind of flat and my son wouldn’t latch. The hospital LC got us nursing with a nipple shield which worked, but it took a long time for my supply to get established and my son was very slow to gain weight for the first 6 weeks. It took 13 weeks total to wean him off the shield and everything has been going well since. I feel for you that you overcome one obstacle only to reach a new one. Anyhow, the only thing I can possibly help with is to suggest a nursing necklace to give Ruby something to grab while nursing so that you maybe won’t get scratched and pinched. I have a home business making and selling them on etsy. I will give you one at no charge if you want to give it a try. You can have your pick of the ones I’ve got listed at http://www.lifecirclesnecklaces.etsy.com

    • http://www.tempestbeauty.com/about-this-blogger/admin/ Mandy

      Thank you Lori! Definitely worth a try… I appreciate it so very much! <3

  • Jen M.

    Has anyone told you to contact Jennifer Tow yet? She is a fabulous LC and will probably be able to help you.

    • http://www.tempestbeauty.com/about-this-blogger/admin/ Mandy

      Yes! I was actually in contact with her for a while. Unfortunately, her consult charges were more than we can afford, so I didn’t end up getting to work with her. :/

  • Meagan

    Mandy,
    I just happened to stumble upon your blog when doing an internet search on lip ties. My little girl is almost 3 months old and we started having issues around 6 weeks. When she was first born she latched on and sucked right away. I was in extreme pain (even had blood blisters on my nipples) but thought it was just new-breastfeeding-mom pain. I was seen by an LC in the hospital and she didn’t indicate there could be any problem. I had an over-supply and an overactive letdown which caused her to gag and choke but this got better. She was gaining weight and the nipple pain improved after a week or two, so I thought we were home free. Around 6 weeks, she started screaming occasionally when I would try to nurse her. The only thing that would calm her down was the pacifier. One day she went 5 hours btwn feeds so I called an LC and she suggested I take her to her pediatrician. So, we did this and her Dr said she had thrush (I had noticed a white coating on her tongue but thought it was milk!). She was put on nystatin for 14d. On day 12, her tongue was not looking better and her feeding was getting worse. She nursed well in the first part of the day but as the day went on she would fuss and scream and refuse to nurse. I went to see an LC to see if maybe my supply was going down and she watched me nurse her, weighed her before and after (she transferred 4 oz), and told me my supply was fine so it must still be the thrush. We went back to the dr that day and the nystatin was switched to diflucan. On day 7/10 of diflucan, tongue is still no better so we go back to the dr again. And this time, she hasn’t gained weight since her last visit. So, the dr was concerned that it wasn’t thrush but maybe something else, and she wanted to do blood work to check her immune system. She referred us to ENT for the tongue and to immunology because her blood work was abnormal. We saw ENT, they said it wasnt thrush and they didnt know what it was, but it probably wasnt causing her feeding difficulties. So, we were back to square one. The immunologist just wanted to repeat the blood work, which came back normal and it was decided that diflucan was the culprit for the abnormalities. She was still not gaining much weight so I consulted with another LC. She told me she thought my baby was tongue tied (and a posterior tongue tie at that)! She makes a clicking noise when she nurses, she loses latch frequently (I have always had to hold my breast for her, I thought it was just that my breasts were too big for her to handle), and her jaw tremors. It wasn’t a problem in the first few weeks because my abundant supply kept her from having to do much work. But now that she actually has to work fot the milk, she gets frustrated when she can’t get it. It was all making sense!! I was hopeful again! After weeks of anxiety, frustration, and lots of tears, I felt like we were finally getting somewhere. We saw ENT again, and they told me she wasn’t tongue tied :( but he would clip it anyway. I allowed him to clip it because I trusted the LC over him (he also told me to STOP pumping because I was removing too much milk and then there wasn’t enough for my baby when she tried to nurse, ha!). Unfortunately, there was no improvement in her nursing. She nurses fine first thing in the am (when my breasts are engorged) and then the rest of the day I can only nurse her if she has just fallen asleep. Went back for another wt check and it’s still not ideal, so obviously our little routine of nursing when she is half asleep wasn’t working. Her Dr thinks maybe she is too old to learn a new latch/suck, that if the clipping had been done earlier it may have made a difference. Interestingly, the white coating on her tongue finally cleared up and we still don’t know what it was. I think that was just a distraction for everyone, we all thought that was causing her feeding difficulties, when truly it was something else. So, after much thought and anguish, I decided to just pump and bottle feed her my milk. And I said I had to stop obsessing about it, that I had done all I could do, but clearly I can’t stop obsessing because I found myself online looking at lip ties!! I think my little girl also has a lip tie. I called my LC and asked her about it and she said she doesn’t think lip ties cause as much of an issue with transferring milk as tongue ties do, and that most ENTs won’t clip them. I really wanted to exclusively breastfeed until I return to work (in another month) but I am not sure I want to pursue this any further. For my own sanity, I think I need to let it go and be happy with the fact that I can pump and still give her my milk.
    I apologize this post is so long!! I truly feel your anguish and commend you for your efforts!!

    • http://www.tempestbeauty.com/about-this-blogger/admin/ Mandy

      Oh Meagan. I’m sorry it took me so long to reply, but I’m even MORE sorry that you’ve gone through this. It breaks my heart that so many women are going through experiences just like ours, when the problem can be fixed. It should be fixed. Ruby and I have been pumping and bottle feeding almost exclusively since 4 months, and while it’s not as easy as nursing, we’re doing well. We keep nursing at night because, to me, that’s easier than getting up and making bottles – as well as the fact that my breasts are usually quite full at night and she seems to get plenty of milk. I hope that you and your sweet sweet girl remain happy with your milk arrangement – whether or not it includes any nursing – and that you understand what an incredibly precious gift you are giving her in your milk. You are an incredible momma! I’m so, so proud of you. Thank you for sharing your story… I wish it had a different ending, but you and I… we’ll know better the next time around, right? Huge huge hugs to you mama. Sending lots of love.

  • Umitsangie

    First of all, GOOD JOB MAMA!!! Don’t give up. You are doing the right thing here. It’s not over. You are not finished. Your little Ruby might not enjoy nursing right now, but you know she loves your milk, and it’s exactly perfect for her. I’m sure you know all that already, you’re on top of it! I can tell that you’re really stressed though, and I know ruby must be too. Can you take a nursing vacation? Camp out in bed with your little girl. Nothing but mama, breast, and movies for a whole day, or a whole weekend if you have time! Relax together, enjoy each other, let the housework go. Do lots of skin to skin, leave your breasts available to her. Remember that it will get better. It will. I believe you will find the help you need. I believe there is an answer. Ruby is one lucky little girl to have you fighting for her. You are not failing. You are doing EXACTLY the right thing.

  • Amy Stumpf

    Mandy,

    I’m only now finding this blog entry, and I know it’s 2years old, but it brought me to tears. Your story was forwarded to me by the 7th BFing professional (IBCLC, LLL, ENT, etc) who has tried to help my daughter and me figure out our BFing problems. As I read your story, I cried with each paragraph because I feel like you are telling my story. My Nora is 7 months old, and we are in the exact place you were when you ended this post. Please, Please help me. You have been where I am now. Please tell me you didn’t give up. Please tell me you found a place where there were more answers than questions and problems. Please tell me you made it to the other side and you and Ruby were able to enjoy nursing. I would be eternally grateful if you could e-mail me to share ideas, advice, or reccomendations. My email address is amylewisphoto@gmail.com

  • Scooter_ko

    Okay I found this by looking up “lip tie” images. I’m going thru the same thing. Just wondering, how did it end? Did ruby ever nurse well? My baby is 5 mos, isn’t getting enough milk from me, sucks at nursing (my breasts are covered in scratch marks!) and I JUST checked her mouth and noticed a lip tie!

  • Mcsarah_15

    You could have been writing my exact story. Did you work it out? I have a 7mo! I’m exhausted and just so terrified it will happen again to my next child too!! Please please tell me it got better! Can you email me if you get this – sarahmh.colwell@gmail.com. I need advice!!!

  • Kim

    I know this happend 4 years ago for you, but it’s like you’ve written down my story. I saw 3 LCs who said nothing was wrong with my lo suck it was just because I didn’t have enough milk due to a breast reconstruction, finally found an lc who checked me, for the first time in two months somebody was checking my breast to see if there was enough milk kanals and tissue to produce milk. Worked out I had 5! Blocked kanals. And my lo had severe lip and tongue tie. Than went searching for someone who could “fix it” unfortunately I live in holland so a ticket to NY was to expensive. I made an appointment with our pediatrician who said my lc should go back to school since there is no such thing as lip tie! The search went on. In the end we have had 4 appointments I. Hospitals who all said on the phone that they have experience with lip ties but every time we came there was nobody there who knew anything! One time even got planned in with a digferent doctor than we agreed to an the one we saw now also never heared o it. Finally we found a midwive who was also an lc who had been doing revisions on the other side of the country. We went there and she cu both ties. Nursing went well for a few days ( lo was now 3,5 month old) but my supply was really low. My lo in now 9 months I still breastfeed but supplement 4 bottles with formula, my noobs are black n blue from pinching, hitting, grabbing and pulling. My nipples are sore from the shallow latch which she reversed back to for some reason. She, like your daughter has an disorganized suck, waits for the letdown (which takes 8 minutes to come in since she doesn’t really stimulate it) and only wants the nipple in her mouth. Also curious to hear how your breastfeeding continued?

    • http://www.tempestbeauty.com/about-this-blogger/admin/ Mandy

      Kim – I’m so sorry it took me so long to respond to this. My little blog has been quite neglected since the birth of our third.

      Ruby and I continued to try to nurse until she was 13 months old. During the day she got mostly bottles. At night, she would nurse. She got sick with a stomach flu at 13 months and I fell pregnant with my 3rd – milk dried up and she refused to nurse in about a week.

      I hope things are better for you. <3