I recently met Nicole at a local doula gathering. When she shared her breastfeeding story with me, I was overwhelmed by emotion. I immediately asked her two things: 1-How will you work through this to help other women as a doula, and 2-Do you like to write? I am so grateful she generously poured her heart out to let others know how painful and confusing it can be to face the obstacle of not producing enough milk. I say it to moms everyday: We don't expect feeding our babies to be so hard. I have worked with many moms experiencing milk supply issues due to IGT, PCOS, breast reductions, and extreme blood loss during birth. Very often there is a deep sense of loss. Thank you to Nicole, for being vulnerable and honest -- I know it will help others.
"Your worth as a mother is not measured in ounces." This, this right here has been my solid ground -- my strength when I just can't seem to stop beating myself up for things I cannot control. Let's rewind a second, shall we?
Being a young mother is never easy, especially when you're the first of all of your friends to have a baby. You have no one to look to for advice or wisdom, it's just you and a new baby who won't stop screaming and nurses who are less than helpful. I was 19 when I gave birth to my greatest accomplishment and I was so proud, but what was I doing wrong? Why wasn't she latching? Sure, I knew breast is best, but as a first time mom, the crying was overwhelming and I just wanted her needs to be met. The night after she was born she got a bottle of formula because she had been crying non-stop and hadn't eaten because she hadn't ever latched for more than two minuets at a time. I was sad but I was just happy she wasn't screaming from hunger anymore. I had about 6 women give or take look at my breasts (or lack there of) and touch them, without permission at that, and no one had any advice for me -- so I went home, formula in tow and with no regrets.
At home I continued trying to pump, trying to latch her, and just trying to get a supply when I only had drops at a time. I tried a nipple shield, pumping religiously, teas, supplements, and I just gave up because I read some women just don't respond to a pump. Afterall, she was fed so she wasn't really going without, was she?
I have since given birth again, 11 months ago to be exact. This time to my son and my second greatest accomplishment. Before I conceived him and during my pregnancy, I devoted HOURS to researching the best parenting practices, and that included breastfeeding. Breastfeeding: Natural. Normal. Tradition. Instinct. The reason the human race has survived for centuries. I learned that every woman should be able to breastfeed if she "tried" hard enough. I learned about proper latch, feeding on demand, skin-to-skin, the benefits of natural labor, tongue ties, lip ties, no pacifiers or bottles for a minimum of 6 weeks. The list is basically endless, I knew it all and I was confident. You can ask my doula, the one thing I wanted the most out of my birth plan was to be able to breastfeed, and my worst fear was not being able to breastfeed.
After 7 hours of labor I gave birth to my son, completely naturally. Yes! I did it! I was so proud of myself and immediately placed him to the breast. I remember looking at my doula and saying, "look, his mouth is big, he should latch nicely," and he did. He latched and we spent so much time nursing. We denied baths and took off that annoying hat they put on him -- everything was textbook. We went home after some time on the lights for jaundice.
Did I mention everything was textbook? It was...until it wasn't. He constantly wanted to nurse, which is normal for babies. But then I noticed he wasn't peeing much anymore, and he wasn't satisfied after nursing for what felt like an eternity. I birthed him on Friday afternoon, and by Monday he had extremely chapped lips, yellow skin, yellow eyes and little urine output, but I was basically in denial. The next day he was admitted to PICU for jaundice and had to spend 24 hours on the lights. I HAD to start supplementing because my son was starving. I was starving him. My body was failing him. I cried and cried and cried. From 7 lbs 6 oz, to 6 lbs 3 oz and NO urine output. I did everything right, why was this happening to me? I was devastated, but despite my pain I kept at it. I met with an LC who gave me an SNS and and an abundance of advice that included "if things don't change in 1-2 weeks then you just might be one of the small percent of women who can't breastfeed."
Can't breastfeed, what? Some women can't produce milk, but why?
We went home the next day and he was thriving from being supplemented, but I hated myself -- hated the body that birthed two beautiful children. It's an awful feeling, a feeling that left a wound that is still as fresh as when it appeared. I kept at everything I had learned and I never got an increase in supply. Between both sides I couldn't even pump to cover the bottom of a bottle. Prescription drugs, water, clean diet -- NOTHING helped, but why?
IGT: insufficient glandular tissue. I found a great support group on Facebook that was my saving grace, they encircled me with comfort and understanding. There are markers for IGT and I realized that I had most of those markers. Buy why hadn't I heard of this before? All of the articles I read and people I talked to and I had never heard of it. All of the medical professionals that had seen me topless and I never heard a word spoken about it. Why aren't people trained to notice this, and why isn't this a more well-known issue?
This has been a long road and I'm still suffering. I can't feed or nurture my baby the way I was designed to. He's missing out on the best kind of milk his little body was designed to live off of. We did donor milk but it's hard to come by, honestly. He's now exclusively formula-fed and I hurt every time I wash or make a bottle.
I have since became a birth doula, and I almost feel hypocritical about it. How can I offer breastfeeding support to women when I can't breastfeed myself?
I'm healing and I've come to be a huge lactivist. Just because I wasn't and couldn't be successful doesn't mean I don't know the dos and don'ts of breastfeeding, and it doesn't mean that I won't run in to someone who will struggle like I did (and still do).
My heart hurts often and I still cry a lot, but I am healing. I need to start loving my body again. My first step to forgiving the things I can't control is writing this in hopes that more people will understand this kind of terrible struggle. It may not be a big deal to some, formula vs. breast, but to others, it's extremely difficult to accept.
And that's what I have learned to accept.
Nicole is a new doula in the Bakersfield Area. The mother of two little ones, she has experienced a wide range in parenting beliefs and ideals in a short time. She understands birth and mothering isn't always about choosing what you want, and rather, adjusting the best to what comes your way. Nicole is dedicated to supporting women during birth AND breastfeeding, to help them find success as they define it, with some fine-tuning here and there according to what the experience brings.
You can find Nicole on Facebook.
I had a doula client once who was struggling to breastfeed her baby. Nikki's baby was on her breast about 50 minutes of every hour, 24 hours a day. We were in contact daily, either by phone or in person. I kept connecting her with IBCLCs to troubleshoot the issue.
The first IBCLC was Ashley. She was very experienced, and a friend of mine. She suggested Nikki pump after each feeding and then offer the baby breastmilk in a bottle – in addition to feeding him at the breast. Nikki tried this and quickly realized it may help her make more milk, but it was not helping her stay sane. Ashley had to go out of town, so she suggested we meet with another IBCLC, Brenda.
Brenda was a very new IBCLC, having just passed the exam -- and she was also a friend of mine. Without regard to Nikki, Brenda created a plan to have mom weigh baby before and after every feed and record this information on a sheet of paper that looked like a chart with about a hundred boxes on it (read that sentence a few times so you feel overwhelmed -- that was the intent). Nikki didn’t even get so far as to try this – she said, sadly, “I can’t imagine being able to do all this without having a full-time nanny.”
Alone, Brenda and I discussed the situation. “What do you think?” I asked.
“I don’t really think there’s an issue – I think it’s in her head.”
I was hurt by this statement! I had wiped this mother’s tears, sat with her and listened to her share her fears that she was starving her baby -- that she just knew something was wrong. I didn’t realize how damaging it is to hear a care provider state she doesn’t believe her client/patient.
Compelled to say something, I responded quietly: “Whether it is real or not, it is real to her. How can you help someone if you don’t believe them?” This was real bravery on my part, to tell Brenda how I felt. Embarrassed and feeling vulnerable, I changed the subject. In a couple of minutes, I made up an excuse to leave.
I didn’t say anything to Nikki about this exchange, but she chose to discontinue seeing Brenda. Working hard to keep breastfeeding, she continued to nurse her baby as often as he needed, leaving time for just about nothing else. Exhausted is not even a word to use here – Nikki barely had time to use the bathroom, eat, or shower – forget about self-care, healing, meaningful time with her partner, or just stopping for a minute. Everything was rushed, and what was accomplished was accomplished with a baby crying in the background.
I was able to finagle one more meeting with a third IBCLC, Carly. She was very experienced, and also a friend of mine. Normally Carly wouldn't have been an option because of insurance issues, but as I discussed the situation with her, she agreed to see Nikki.
I was so excited to share the news with Nikki! I called her immediately and said, “Guess what? Carly can see you! She said to just call and set something up!”
Then came a long pause, and, “You know Stacie, I think I may be done.”
Oh, my heart fell. I knew how hard she was working. I knew for Nikki these early days were not about bonding and enjoying her new baby, but about feeling scared and always feeding, all-around-the-clock. I wouldn’t fault her for moving on and putting the breast to rest. Who could? And knowing what I did about this woman -- as we had been building a relationship for months -- and witnessing the strength and power she built and held during her birth, I was concerned she might look back and regret not having tried just one more thing.
I didn’t want to press her, and I resigned myself to one last sentence on the matter before leaving it all alone: “I would hate for you to look back and wonder if this might have helped.”
And then I changed the subject.
After we had been talking for about 10 minutes, Nikki interrupted the conversation with – “Okay, I’ll see her.”
This mother had PCOS, which we all knew, but as her milk came in promptly after birth, we mostly put that on the back burner. Baby was gaining 4ish ounces a week, nothing terrible enough to raise a red flag with the pediatrician. And like I previously mentioned, her baby was on the breast almost constantly.
At this consult, Carly suggested Nikki ask her doctor for a Domperidone prescription, to increase her milk supply. Carly felt Nikki could stop pumping (more like, stop feeling guilty about not pumping). Carly suggested if the baby was nursing that often, there should be adequate stimulation to keep up Nikki's supply. Nikki finally felt her needs were being taken into account as this plan was created and shaped -- that meant it was more likely to be followed.
And things got better, quickly. Nikki got the medication on a Wednesday. She and her husband and baby were going out of town for a weekend wedding. She called me, overjoyed on Saturday, saying she was already making more milk, and her baby was happy and satisfied. “He has been eating every couple of hours instead of every hour for 50 minutes! For the first time ever!”
So what’s the point here?
1. I knew all of these IBCLCs well and continued to trust and refer moms to them. It wasn’t that any one was better than the other. No one made a mistake or mishandled the situation. It’s just that something different came into each lactation consultant’s mind first, and that is part of being human.
2. When we are in a helping position and a mother tells us the plan we have created isn’t going to work, we need to let go of our egos and the feeling of wanting to discount the mother and her experience. She has a better picture of what is happening in her life than anyone else, and we need to trust that.
3. If you are presented with a plan that doesn’t seem workable to you, that doesn't mean you are stuck. A care plan should be made with you in mind, not absent of your specific needs and unique challenges. Seek out a second opinion. Even a third. Because you never know -- sometimes the third time’s the charm.
Just a few end notes:
My older sister likes to remind me that once upon a time, while pregnant with my first, I responded to her question of, "Are you going to breastfeed?" with an unsure, "...if I can." To this day I still deny it. I honestly have no recollection whatsoever of that conversation -- I know she wouldn't make it up, though.
Over 16 years later, life has put me in a different place. I have successfully breastfeed my four children. Soon after my second baby's birth I went on to become a breastfeeding counselor, leading meetings for local mothers and mothers online, taking phone calls from frantic mothers all hours of the day and night, making home visits and hospital visits, and participating on our county's local breastfeeding coalition. I have written articles for journals, magazines, and blogs, spoken at breastfeeding conferences, and I am currently working toward becoming eligible to sit the exam to be an IBCLC. I cannot imagine who that person was who meekly replied, "...if I can," all those years ago.
Yet with all the future-breastfeeding moms out there, this is a common feeling. I think it stems from allowing a bit of room for failure -- not setting the bar too high in case of disappointment. Simply put, lowering expectations.
You only have to go as far as your nearest mother to find why this answer has held its place as, I would guess, the number one response: We love to share our horror stories. Any pregnant woman can attest to this when it comes to birth stories -- suddenly women are crawling out of the wood-work to tell you their impossible experiences -- the pain, the suffering, the horridness of it all, oh, and good luck! This carries over to breastfeeding experiences as well.
One day in the grocery store, a young clerk asked, while checking my items, if this was to be my first baby? I was prepared for her to launch into her personal drama, so with my fists clenched, and most likely talking through gritted teeth, I replied, "Yes." She looked at me so sweetly and honestly. "You are going to do just fine." I was stunned! She must have sensed this -- she went on to say, "Having my son was the best experience of my life. I wouldn't trade his birth for anything." I left for my car feeling like she had just revealed a secret to me -- I felt this young lady, about my age, had seen something in me I did not know I possessed. I felt powerful.
Birth and breastfeeding are related in the way we think about them both: We hope for the best, but in the end, we do not have ultimate control over how things will turn out. This tends to be more true for birth than for breastfeeding. Some of the most committed breastfeeding mothers I have met have been mothers who had to have cesarean births after planning completely natural births. I think many of them found exerting energy into the breastfeeding relationship healed the loss the cesarean birth left with them.
As women, we need to focus on sharing our positive feelings about birth and breastfeeding. We need to assure other mothers although there can be problems and set-backs, there is always a way to accommodate, adjust or overcome with the right network of support.
Let me share the biggest secret to a successful breastfeeding relationship: Know where to get help. You can always call me with your breastfeeding concerns. My doula role ends after your baby's birth, but my role as your breastfeeding counselor continues until you no longer need me.
I help breastfeeding moms with lactation support in the Bakersfield, Visalia, Tulare, and Hanford areas of California's Central Valley. So often when I answer the phone to a mom looking for breastfeeding support, somewhere in there I hear the voice-cracking and the tell-tale pauses that show she is working hard just to reach out and share her story. We are often not prepared for how hard breastfeeding can be, and the toll it can take on our hearts. We hear of the joy babies bring, the bonding, their smell, their sweetness -- maybe someone out there mentioned being really tired or not showering easily in the first weeks. We are culturally conditioned to worry more about birth than breastfeeding.
When a mom is struggling, what can we do to lift her up? What words and actions can scaffold her, infuse her with strength? I asked women to think back to what was encouraging and motivating, that anyone (not just a breastfeeding helper) could do, to make the journey a little easier. Here is what was shared:
1. "Keep the focus on me." Many of us have had issues with breastfeeding, and often the inclination is to quickly get to our own story and how we survived. "I cracked and bled for two weeks. I didn't have enough milk so my friends gave me donor milk. I locked myself in a room and said, 'we will figure this out,' and I never gave him a drop of formula, even though my doctor suggested I was starving him -- I just powered through." This is not helpful. It isn't that on a normal day Mom can't appreciate your experience, it's just that right now, it takes away from her very-current state of being vulnerable and needing support. If you can relate, say something simple that doesn't turn the whole subject back to you, like, "I remember that." It's okay to reaffirm you have felt something similar; it's not okay to shift the focus so now you can talk about yourself. In this moment, it needs to be all about Mom and Baby. It takes acute awareness to stay in the present with her, and this truly is your gift to give.
What is not helpful: Launching into your own tale of triumph, terror, or failure, especially with the intent of showing Mom you had it worse; the same holds true if you feel compelled to share your grief, your anger, or what you would do. Apply Susan Silk's "Ring Theory," which I have adapted. The idea is, the person facing the crisis (Mom) has the center spot. She is allowed to say whatever she wants or needs to, to anyone else. As the rings extend, others are assigned positions according to how close they are to the center. So Mom's partner is next. Again, he or she is allowed to vent in an outward fashion. Family and friends will have their own feelings, and it is appropriate to dump those outward as well. Advising, sharing your worries or coping methods, explaining your exasperation with the situation, etc., is never done inwardly, because this adds to the load of those dealing most directly with the crisis.
2. "Use those active listening skills we hear about." Rephrase what she says: "It sounds like you are scared that breastfeeding is not going to work." By restating what you heard, you aren't going to tell her something she doesn't already know, and it lets her know you heard her. If it isn't what she's feeling, she can clarify by offering more information: "No, I feel like it is working, I just think maybe it will never end up being a smooth, easy process, like I imagined." It's okay if you don't get it right -- she will understand you are trying to listen to her feelings. Acknowledge her struggle -- you can never go wrong by saying something like, "I see how hard you are working." Don't ever under-estimate the therapeutic power of being a good listener.
What is not helpful: "Maybe it's not meant to be." "Haven't you tried hard enough?" "Formula/ bottles are here for a reason." "Your cousin Jill wasn't able to breastfeed, and everything turned out fine for her."
3. "Don't be afraid to touch me." When the dam holding back the tears and feelings breaks, she can feel cracked open and raw, and having an audience can make those feelings even worse. You can touch her shoulder, take her hand, or offer the comfort of a hug. Sometimes touch can give more solid support than any words can. When a baby cries, he is letting us know he needs something, and that gives us the opportunity to respond and help him feel better. When adults cry, there is the same opportunity to help someone feel better while also creating a bond of love or friendship. You may not know what to say when you see her like that, but you can't go wrong by showing her physically that you care.
What is not helpful: Staring at her, pretending she's not showing emotion, visibly looking uncomfortable, or telling her not to cry.
4. "Share in the loss I am experiencing." Whether breastfeeding will ever work for Mom and Baby, in the middle of the crisis, it is a loss -- a loss of hopes, a loss of dreams, a loss of what she thought would be an "easy and natural" way to feed her baby. It is okay to treat this as any loss a friend might face. This isn't the same as having two choices for dinner -- chicken and rice or beef and potatoes -- and then having the choice made for you. Breastfeeding comes with many overwhelming emotions. When she feels like she can't feed her baby, in that moment there is nothing that can feel worse, and it feels like loss. We can accept and value that, even if we can't understand it.
What is not helpful: "It could be worse." "At least you have a healthy baby." "I don't understand why this is affecting you so much, it's not like someone died."
5. "Let me decide when I am done." Well-meaning friends and relatives who are concerned about Mom's physical and emotional well-being may try to convince her that she's worked hard enough. Mom is the only one who can judge that -- she knows her options. Wait for her to tell you where she is in this journey. One woman, a neurologist, shared: "If you say you are suicidal, people don't say, 'yeah...you should probably just go ahead...' They figure out how to help you, they talk you off the ledge." It obviously isn't the same thing, but in the storm of hormones, emotions, life changes, and struggles, the very-real feelings of hopelessness and loss of control can be strong and similar. Keep encouraging her. This is her marathon to run -- she decides the pace, the route, when to take a break, or even when to stop -- you cheer her on from the side no matter where she is in that loop, no matter how you are feeling about her situation. As another woman put it: "It's cruel to try to take someone's hope away."
What is not helpful: "It's unlikely by this age your baby is going to figure out how to breastfeed." "Just try X, Y, or Z -- it fixed our issues." "Not everyone can breastfeed." " I just can't bear seeing you so upset."
6. "Do something for me that will save me from having to do it myself." Rabbi Harold Kushner is the author of, "When Bad Things Happen to Good People." When asked to share what he's learned in his years supporting people in the midst of suffering, he said it could all be summed up in this statement: "Show up and shut up." Anything you can do for Mom that gives her more time to be with her baby and concentrate on self-help and healing, is priceless -- and ANYONE can help. "My husband has always been supportive. He always left it up to me to decide what I wanted to do. And when I decided I wanted to continue to try, he helped me pack up the baby and drove me to LC's and LLL several times a week. He washes bottles and pump parts, he's a pro at freezing, thawing, making bottles, hooking up my pump. His labor of love is so important at continuing exclusive pumping, because I alone have logged about 3,000 hours of work towards pumping and pumping-related activities for the first year of my baby's life." Further out of the ring, family and friends can take care of pets or outside responsibilities, bring meals or snacks, run errands, make phone calls, drive Mom and Baby to appointments, and always, always there is housework and laundry.
Ronald A. Rasband shared: "If you come upon a person who is drowning, would you ask if they need help -- or would it be better to just jump in and save them from the deepening waters? The offer, while well-meaning and often given, 'Let me know if I can help,' is really no help at all." It can take energy, effort, and humility for a person to list what she could use help with. In the movie "Robots," one of the characters, Bigweld, had this motto: "See a need, fill a need." Jump in and do what you can -- when there seems to be nothing else, there is always service.
What is not helpful: Service with conditions; making the job seem too complicated to take on, or making it too complicated for Mom to delegate; rushing in to offer babycare when Mom and Baby could be bonding; expecting a thank you card.
Society says feeling bad when breastfeeding is hard is not appropriate or okay. We don't want to make anyone feel bad if they can't breastfeed, so when a woman struggles to continue, her hard work is not always encouraged or even noticed. To really help, though, we need to suspend this judgement and be willing to accept her feelings and her reality. Becky Bailey writes: " Acceptance means recognizing that people, situations, and events are what they are. Each moment simply is as it is. Acceptance doesn't mean that we approve of the moment, only that we recognize that what is happening at a certain moment is, in fact, happening."
Two women in particular said they couldn't remember anything helpful or hopeful that was said to them. This lack of acceptance is apparent when they shared what they wished they had been told:
"This is the hardest thing you will ever do, but you will get through it. You are getting through it. One day at a time. You are amazing and strong and this will be worth it. It does matter."
"I support you and will be here to help you if you decide to keep trying or you want to stop. I value you and think highly of you as a mother and person, no matter your decision."
Accept her struggle. Accept her feelings. Open yourself to her reality and you increase her willingness to accept your help. When she comes out the other side (whatever that other side looks like), it can be with positive memories of the support and care that was shown to her and her baby.
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Through Tongue Tie Babies Support Group, I "met" Jen, and then we were able to meet in real life. While Ezra and I struggled with common tongue-tie issues related to excessive weight gain, reflux, "oversupply," and all with a happy baby, Jen and Christian were at the other end, experiencing intense colic, nursing around the clock, failure-to-thrive, reflux, and diminished milk supply. I asked her to share her story, and it is extreme. I am grateful for her willingness to upturn all of these feelings and emotions, and I know she does it to help other families.
Even though it has already been six months since we went through our revisions, I still find it hard to think about what my son Christian and I went through with his undiagnosed tongue and lip ties. I should include my husband, Scott, in that statement as well, as he had to be there for all of the problems we were dealing with. He spent his time home with us soothing a screaming baby -- a baby who we thought had reflux, gas, and colic. He helped me cut out every offensive food in my diet that could have been making him sick (according to all of our baby books and the websites I read, Christian was probably upset all the time because of my diet, the gas that infants naturally have, and because he was just a “colicky” baby). For his first two months of life, we spent 8-10 hours a day laying on the couch nursing. He would fall asleep a few minutes in, and I would try to get up to do something around the house or grab a bite to eat. As soon as I moved, he would scream until I nursed him again. I would see a little heart-shape at the end of his tongue and a piece of tissue going halfway up his tongue that I thought was suspicious, but I didn’t think too much of it.
Let me backtrack. I was supposed to have Christian in a birth center until we had complications three days into my labor. He went from the right position to the wrong position and I couldn’t dilate due to horrible back labor. I was not planning on spending time in a hospital, but during our overnight stay I must have called the nurses every hour to help me with breastfeeding a baby that couldn’t latch well from the get-go. I was told that not being able to latch was normal and we both had a lot to learn with each other. The advice didn’t sit well with me because it seemed extremely hard to breastfeed him. A nurse supplied me with a nipple shield and we “kind of nursed.” It still hurt, but I had a tool that helped a little.
I left the hospital with my baby and my shield promising to appear at our pediatric follow-up the next day. When Christian was weighed, we saw that he went from 8lbs 5oz to 7lbs 12oz overnight. The doctor didn’t seem concerned and arranged for us to come back a few days later -- he was barely at 8lbs at that visit. She said that since he was gaining weight, even though not quickly enough, she wasn’t too worried and I should just come back in for our two month appointment. She chalked up the weight loss as being a normal symptom of jaundice and that some time in the sun and feeding him constantly would clear him of it.
We spent the next seven weeks nursing all day and all night. I had bruised nipples and the baby had blistered lips. I had heavy letdowns in the morning and he would spit up most of what he drank. I was irritable, frustrated, and would spend the five minutes a day I had alone crying in the shower. My husband learned all kinds of tricks to calm the baby, although now I’m realizing that we made him cry it out and he just gave up and slept because he realized he wouldn’t get any food. That’s my best guess, anyway. I don’t think our gas moves were helping him. Being new parents, we figured that we had to work out the gas and when he would fall asleep we figured we did our hard jobs as parents. We had no idea how hungry he was.
When two months rolled around, Christian looked really thin and I started to worry about him. His head was huge, his arms were tiny, and I could see his ribs clearly. My best friend said he didn’t look any bigger (but I didn’t notice how skeletal he was until I looked at pictures I had taken). She noticed him falling asleep while eating and thought he didn’t have a deep latch.
I heard of a breastfeeding group that was part of a local hospital and I decided to go in for support to figure things out. The first time I went, the lactation consultants thought he was a newborn. When they saw him eat, then told me that he was just a lazy baby and they see lazy babies all the time. I was told to constantly make him uncomfortable so that he would
eat. They said he was “happy to starve” and he “circled the drain” -- whatever that meant. Basically, they told me that he preferred just to eat enough to be comfortable and then go to sleep (from my own research, I found that he was working so hard at eating that he fell asleep out of exhaustion). No mom wants to hear these words about their child and instinctually, the situation didn’t sit right with me. I showed her the ties and wanted her confirmation that they weren’t normal (at that point I read a little about posterior tongue tie and upper lip tie in the Facebook Tongue Tie Babies Support Group) and she told me that they were normal, they see them all the time, and that they would stretch. She told me that my bruises were normal and his lip blisters were normal. I wanted her to tell me what my gut was telling me: the ties were the problem. Instead, the baby was blamed. Unfortunately, he was diagnosed failure-to-thrive by the lactation consultant who told me to go see the pediatrician right away or else they would make sure he would be admitted to the hospital. I was told to take fenugreek, pump, and give him as much formula as he would take.
When we went to his pediatrician, she told me that he was fine, not yet failure-to-thrive, and I probably just didn’t make enough milk for him. I pointed out his posterior tongue tie and upper lip tie and she said that those are normal and they would stretch in time. Both pediatrician and lactation consultant agreed I should rent a hospital-grade pump and pump/bottle feed for every single feeding. The lactation consultant sent me home with a case of formula since I probably didn’t have enough milk for him and by that point, she was right. We had two months of bad latching and breastfeeding and my milk supply, although there, was hardly established. I went through the next month pumping, bottle feeding, and “sneaking in” breastfeeding sessions to make sure we kept our closeness and he didn’t decide the bottle would be better for him.
As if pumping, bottle feeding, charting weight and diapers (we bought an infant scale and weighed him six times a day) weren’t enough, there was a huge strain on me feeling like a failure. I could not wrap my mind around my baby being lazy and happy to starve. My instincts were telling me that this baby would do anything he could to survive, and that something had to be an issue. I originally found out about the Tongue Tie Babies Support group through another breastfeeding site where many of the moms were also telling me that all of these things were normal and that we would just work through them. I was told to take fenugreek, eat oatmeal, have a beer, drink a ton of water, and try all kinds of positions. Where some of these things helped a little, I thought they were more like bandages and not cures. After reading through most of the posts, I came across one from a mom who described my story exactly: feeding the baby all day, baby falling asleep, waking up crying, gas, colic, reflux, failure-to-thrive.
She spent the next few hours communicating with me back and forth and encouraging me to go to the support group. There, other parents were telling me almost the same exact story. When I asked why I was told it was my fault or my baby’s fault, they explained that doctors and lactation consultants usually aren’t taught these things in school. I read Dr. Kotlow’s breastfeeding publication and looked through all of the articles I could get my hands on. Finally, the mom who originally linked me with the group told me to go see Dr. James Jesse who only lives an hour away. I made an appointment for the first available opening which was a week away. When I went to tell my midwife, she told me to see someone closer to us and although I agreed, I kept my appointment with Dr. Jesse.
When I saw the pediatrician who clips lip ties, she told me that his tongue tie was very minor and although she would clip it, it probably wasn’t really causing us that many problems. She said his upper lip tie was “too thick” to clip and that I should just wait until he broke it on his own or was old enough to go under general anesthesia and could have it stitched. She watched him eat a bottle and told me that I could just bottle feed him, but I probably just wanted the closeness. As a mother determined to breastfeed, yes, I wanted closeness. I wanted so much more than that. Her lack of knowledge and incomplete revision (both of not revising the upper lip tie and also not cutting enough of the tongue tie) discouraged me but the support group assured me that Dr. Jesse would take care of both issues. When I called his office to confirm, the receptionist said that there wasn’t a tongue or lip tie Dr. Jesse couldn’t take care of.
I took Christian into see Dr. Jesse and within ten minutes he was diagnosed and revised via laser. I couldn’t believe the difference I saw in his mouth, and although he had a hard time breastfeeding right away, he ended up napping which gave me time to allow him to heal.
Our story didn’t end with the revision. After a traumatic birth and two months of bad and overcompensating latch, we had Christian go through craniosacral therapy and chiropractic adjustments. After working with him on his latch and suck, we finally have a good, pain-free breastfeeding relationship. Sometimes I think his suction is a little too good -- creating quite a seal when he latches. I never saw or felt that before when he had posterior tongue and lip tie! After trying an SNS for feedings, I couldn’t really get the hang of it and decided to opt for bottle feedings for supplementing. Some women can boost their milk supply up in big ways after revisions, but mine never quite got to where it needed to be. He wasn’t gaining enough weight still and so I had friends who donated over 150oz of breastmilk to me and we found a formula that he liked. I have to say my milk supply did increase a lot, and with that I have been able to go from supplementing 15-20oz a day to 0-6oz a day, depending on Christian’s needs. He has been gaining weight steadily and his gas and reflux have not been an issue since his revisions. I haven’t worried about the types of foods I eat, nor would I label him colicky. We even took a trip to Colorado for a friend’s wedding when he was three months old and he was not the same frantic baby he was at one or two months old. I enjoyed his first laugh without looking at the fragile, skeletal sweetheart that I would have done anything for.
Even though he is currently behind in weight (tenth percentile), he is healthy, happy, growing, and meeting major milestones. I am just following his lead in providing for him, and it is working out well without a lot of stress. We know that one day this will really be behind us with Christian. We know that we will take our next babies in for revisions as early as a day post-birth if they have ties, and chances are, they will. When I went back to visit the lactation consultant I worked with, she didn’t seem to want to listen to our story, but I plan on going back in with information and resources hoping that she and her colleagues will see this common problem that many moms face and learn the ways they can support them so that no baby will ever be called lazy again. Because of our experience, I want to save other moms the pain of going through what we went through with an issue that is so easily diagnosable and treatable. I hope that my friends can learn from our experience and realize that with their similar issues, their doctor may not have all the answers. I am also thankful that I was proactive in preventing adult issues with tongue and lip tie such as speech problems, digestive issues, tooth decay, and other symptoms that I struggle with as an adult as I have an undiagnosed posterior tongue tie myself.
Even though having a baby diagnosed as failure-to-thrive is devastating, I am thankful for going through the extreme end of the issues because I can use our experience to help other mothers who are struggling. I don’t regret the revisions at all, and would do it all again in a heartbeat knowing that it is fully benefitting Christian.
♥ four young boys and a boy dog (offspring)