Mother’s Story: How I Got to Where I Am Today (My Personal Story)

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Photo Credit: Ina Reed Photography
     I’m so proud to announce that I am now an IBCLC, RLC!  I received my results on Wednesday and I’m so happy to share that with you.  In honor of my results I wanted to share my story of why I chose this path and how I got to where I am today.  This is my story and some is pretty personal but this is the point of mother’s stories project.  This is a story with just a few edits that I shared on a Facebook group when a mother was asking for how we had gotten in to breastfeeding education or doula work.  I decided to share my full story with her because every puzzle piece is important to my path to get here.
     For those of you new to my blog or story, I just sat for the IBCLC exam in October-it’s been my goal since 2008.
I walked with my Bachelor’s degree in Psychology in 2008. From the time I was young I wanted to work with babies and/or children. I went from wanting to be a Pediatrician (until I decided I didn’t want to go to med school because I knew that would be hard to do and be a mom because I wanted to be home with my kiddos and didn’t think that would be easy to do) to a Neonatal Nurse (until I got rejected the two times I applied to an extremely competitive and highly sought after program in Utah with almost a 4.0 GPA out of high school and with the required college courses). I learned that to keep my RN current I would likely be stuck working holidays, weekends, overnights to work just enough hours if anyone even wanted to keep me on just for those. I didn’t like that idea at all so that was one of many reasons I decided that wasn’t for me. When my son was born I had 2 weeks left of school (I believe a week or maybe two and finals week). He wasn’t able to latch at all. We had major breastfeeding issues and no one really knew how to help us but everyone had a few different ideas. Finally we had a nurse that recognized he was tied almost to the tip of his tongue (knowing what I know now I don’t know for sure WHERE it was located so I can’t say what class of tie it really was but I wish I knew!)-he had a classic heart shaped tongue. The pediatrician refused to clip him saying I must be doing something wrong because he had seen babies with worse ties latch just fine. It was at that time that I started being more skeptical of the medical system and began to learn about where the lack of knowledge was with breastfeeding with medical professionals. We went through absolute hell. I was discharged 2 days postpartum from the hospital with absolutely no way to feed my baby but hope that an ENT would release his tie the next day. I had no pump at all, nothing. My parents went out and bought me a hand pump and I pumped near constantly to try to get something (I believed I had no colostrum because I never saw any when I was forced to bond with my pump every hour while someone else fed my baby). He got clipped and latched once and then never again. The following day we saw an IBCLC that gave us a shield after trying a few things and I cried so many tears of joy because I could FINALLY feed my baby after a very horrible night before when I pumped for hours straight stopping to give my husband a bottle and begin pumping again because he refused formula after he got my milk.
     I became VERY passionate about wanting to help other mothers. When my son was a year old a very wonderful LLL leader asked me if I wanted to explore becoming a leader. I started attending meetings when he was a couple of months old (he always nursed with a nipple shield until he self weaned at 14.5 months). I started the process to become a leader and was done within 2 months. The leader that was helping me beyond that first one to go through the process told me it was a little too fast and to back up and go over a few things with her and wait for a few months. A few months passed and I wasn’t able to become accredited because I didn’t have any extra money to pay my dues-my husband was working and attending school and we had just enough to barely cover our bills and a small amount of groceries, just enough but no extra. My group offered to pay but that wasn’t allowed. I had to sit on things for a while and in the meantime experienced my second loss and third loss while trying for another baby. It took us nearly a year to keep a pregnancy but I found out I was expecting a little after my first son’s second birthday.
     Things got REALLY tough financially and we didn’t even have money to buy food for several months-fortunately I had bought extra here and there and it got us through until we had to reach out for additional help from our church for a month. We were blessed after the birth of our second son for my husband to decide to pick up a second full time job so we could pay down a little bit of our debt from being without my paycheck leading up to our first loss and pregnancy with our first son when I had gone to work as a loan officer on commissions. It was at that time that I was able to pick up and continue with my application. My husband got accepted to graduate school which took us from Utah to Oregon and right after we moved the paperwork was finally finished and I became an accredited LLL leader.
    I was blessed to be able to help many mothers in Oregon through lots of difficulties. It grew me as a mother too being able to continue learning and growing. My daughter came along just before my middle’s 3rd birthday. She had major breastfeeding issues (all 3 of my children were tied-my middle had difficulties for the first 8 weeks but breastfeeding was always uncomfortable). She had a very thick class 4 lip tie and a very tight posterior tie with a little bit of an anterior tie. She was revised by Dr. Ghaheri in Portland where I had been sending moms for a couple of years at that point. Between him and the IBCLC that worked with me and the extent of their passion and knowledge I was driven to complete my requirements to sit for the IBCLC exam. 2017 was my goal. I was able to surpass that goal but it wasn’t without challenges. I saved every bit of my birthday and Christmas money as well as my fees I got from doing babywearing consultations in Oregon to complete my 90 hours of lactation specific education (I had taken my health science classes in college thank goodness because I was on the path to go to nursing school). I did my first half just before my husband graduated with his PhD and he got a job that brought us to Oklahoma last October. I finished the rest through conferences and a couple of webinars (I’ve now far exceeded the required 90 hours because I’m so passionate about learning what I need to know to be the best possible lactation consultant that I can possibly be).
     I began my private practice this year as a Lactation Educator mainly teaching breastfeeding classes to help me get the last bit I needed. I had hoped for and planned for a scholarship to help me with the exam fee ($660) because my daughter has some medical issues that should have been caught soon after her birth. Every extra we’ve had this year has gone to medical bills for her and 3 ER visits for my children and I was super defeated when I found out I didn’t get the scholarship or even a partial one. I tried to come up with a plan but I only had 2 weeks. My husband encouraged me to set up a crowdsource fund which I wasn’t super comfortable with but he really encouraged me as well as a couple of friends. I decided I would try. I received an outpouring of love from some amazing women in our community and many I didn’t even know and my goal for my exam was raised in 2 days!
     Due to some differences in beliefs with some ways that LLL was going I regrettably had a strong feeling to resign from LLL this summer after being a leader for 4 1/2 years. It shattered me. I felt like it was a test though to stand for my beliefs. I received some threats and some verbal nastiness and some other issues that I won’t get in to due to my decision to resign. It has near broken me. I began my own breastfeeding support group to continue the work of giving back for the help that I have received, especially to the low income women that I’m unable to just give my services to at this time (I’m really hoping to set something up though so I will be able to someday), and the mothers that just plain want support. I’ve been pushed back by several barriers but I will continue in that work.
     I have offered limited consultations this year so that I could study and prepare for my exam. I also teach breastfeeding and babywearing classes. My hope is that we are able to buy a house this next year. I will have to raise my prices next year so that I’m able to stay current on requirements and be able to make a small amount to be able to help my family be able to get out of debt except our big student loans and a house. When we can get in to a house I intend to take clients a couple of afternoons each week-my top priority is to my children who are homeschooled (and that’s especially the best thing for them learning about some psychological issues that we’re trying to get answers for and tools to help us be the best possible parents through understanding how their brains are wired differently). I will still do some home visits but I hope to be able to see some more mothers each week in my home office that will be set up just for breastfeeding and babywearing classes and consultations. Every mother I work with makes me fall in love with this work even more. I want to be the best possible lactation professional and hopefully soon consultant that I can be for them. I sure won’t be able to support my family from it but that’s not my goal! My goal is to be knowledgeable and support breastfeeding issues, but especially infant sucking issues and disorders.
     This journey wasn’t easy and it has taken 8 hard years of work to get here. I’m so grateful for my hard working husband that is able to support my family so that I can do this work.  I hope to also be able to eventually help our family out a little bit so we can get to a better place financially and get the help for my boys that they need. Working in lactation is a total uphill battle because it’s a constant fight against the norm and constant defense of why this field is so important. The hope is though that someday my profession won’t really be needed because we’ll all have understanding of breastfeeding issues to the point that no mother will have to fight for a tongue or lip tie revision for her baby, or for extra sucking help from a speech therapist, or help with many of the other special circumstances that I have been trained to work with clinically, and that all mothers will pass knowledge down to their daughters that breastfeeding is normal and good (avoiding many of the common difficulties). If you want to chat about breastfeeding I’m always open to chatting! I also created a group for people who are interested in sitting for the IBCLC exam someday that live in Oklahoma-no matter where they’re at on their journey.
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Mother’s Stories: Liz and David

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I had the wonderful opportunity to have an interview with a beautiful mother from my LDS Breastfeeding Families Facebook group about her struggles breastfeeding.  Liz Woodfield published her story on her blog, and I could tell she had a very strong desire to breastfeed from her story.  She went through a lot of struggles and wasn’t able to get her baby to latch for the first five weeks.  You can read more about her story here.

Ashley: Tell me a little more about yourself. Where are you from?
Liz: I was born in Fairfax, Virginia and now live in Salt Lake City, Utah.

A: What did you do before you became a mom?
L: I work in recruiting for a large investment bank. I will continue to work full-time after I finish my 4-month maternity leave.

A: What are your hobbies/things you enjoy doing?
L: I love the outdoors! I especially love to hike, bike, ski and run. I also really enjoy reading and photography.

A: Were you breastfed? Did any of your sisters or sister-in-laws breastfeed?
L: Yes, I have two little sisters and all of us were breastfed. My sisters don’t have any children yet. My two sisters-in-law have not breastfed and my mother-in-law did not breastfeed so I do not have a lot of support on that side of the family.

A: Who has been your greatest support to helping you meet your breastfeeding goals?
L: My greatest support has been my husband. He has encouraged me so many times when I wanted to give up. My mom has also been incredibly supportive, as well as one of my sweet friends, Ally, who has an adorable 11 month old baby and breastfeeds exclusively. Ally is also a nurse and has offered endless support. She came over and helped teach me multiple breastfeeding techniques and gave me a shoulder to cry on.

A: What specialists did you see and why? How did they help?
L: I saw two IBCLCs, a Chiropractor, a Craniosacral Therapist, and a Pediatric Dentist. I saw each of these people because we wanted to take a very holistic approach to breastfeeding. We saw the first IBCLC four days after little David was born. She spent a lot of time checking baby’s mouth and diagnosed extreme tension in his jaw and tongue. She was known in the community for finding lip/tongue ties so I felt confident she would find something if there was an issue. After we left our first meeting with her, we noticed the upper lip tie and we asked her about it at our second appointment. She didn’t think it was an issue for breastfeeding. We did not feel this first IBCLC was very helpful because she did not give us many action items or suggestions of things we could do to make breastfeeding work. I had already planned to see the chiropractor early on and scheduled our first visit the day we saw our first IBCLC – the chiropractor was so helpful in aligning baby boy and he was always so calm after each visit. The Craniosacral Therapist was scheduled quite a ways out and I was unsure that it would really be helpful because I had not heard of it before I met with our first IBCLC but we went ahead with it and I am now a believer! You can see the impact of the work she is doing on the baby in the moment it is being done. She was so sweet and patient with baby boy and key in relieving tension throughout his mouth and head. We saw the second IBCLC right after a recommendation from the first LLL meeting we attended. She was also recommended by another friend. She was so helpful! She gave us a ton of homework to do and exercises to work on with baby to help with sucking and building head and neck strength,which would all ultimately help with breastfeeding. I hesitated to spend the additional money to see another IBCLC but I’m so glad we did. She has been amazing and I have had so much additional support through the breastfeeding support group they host every two weeks.

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A: Tell me about your support network, you mention the support a lot in your post. How has everyone helped you meet your breastfeeding goals?
L: I have had the most amazing support network throughout our journey. I already mentioned my husband, my mom, and one of my best friends, Ally. In addition to each of them, I talked to a lactation consultant early on through a hotline provided by my employer and they said something that really helped me: “Breastfeeding is a natural process and can be very intuitive but many people forget that mother and baby still have to learn – they have never done this before so it is a process to figure things out.” La Leche League was amazing. I went to a local meeting when baby was almost 3 weeks old and I was just about ready to give up. Hearing the stories and challenges that so many other mothers faced made me feel so much better about my experience. LLL gave me a few more resources and suggestions that gave me the motivation to move forward and keep trying. Additionally, I used multiple different Facebook groups to read others experiences and reach out with questions and support when I needed it most. I had to seek out these resources but there are so many people out there that want to see you successful with breastfeeding.

A: You mentioned in your post that you took more than one breastfeeding class. How were they different and what did you learn that helped? What did you wish you would have learned in the classes you attended but didn’t?
L: I took an in-person beginning breastfeeding class from a local lactation consultant. I then took two additional online courses from the same LC. They were helpful and went over everything at a surface level. What helped most was learning the basics: different types of milk, different positions, how to get started. I wish I had learned more about problem-solving – where to go, who to talk to, etc. These are things you often cover one-on-one when you meet with an IBCLC but it would have been helpful to have a general overview of some of the challenges you can face in breastfeeding, aside from the more obvious mastitis, thrush, etc. I honestly did not think it was possible that baby would just not latch at all in the first several weeks! I knew pain was possible and latch could be a challenge but did not expect that baby would just not latch. The LC also did not talk at all about tongue/lip ties but I knew some information from my own research and Facebook groups.

A: What books did you read? Which one was most helpful?
L: I read Ina May’s Guide to Breastfeeding, The Nursing Mother’s Companion by Kathleen Huggins, and Breastfeeding Made Simple by Nancy Mohrbacher and Kathleen Kendall-Tackett. I read each of these books during my pregnancy. I feel that Ina May’s book was the most helpful because she did share the experiences of some mothers and went into a lot of details on some challenges; however, I feel the classes were more helpful than any of the books I read. It is difficult to really follow the books and relate to the content when you have not tried to breastfeed yet. I am now reading The Womanly Art of Breastfeeding by Diane Wiessinger, which is dedicated to LLL, and I would highly recommend as the one breastfeeding book to read during pregnancy. It is funny how you learn these things after you have a baby.

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A: Tell me more about your first hour. What were your goals versus what really happened?
L: My goal in that first hour was to have unlimited skin-to-skin contact and have the baby latch within that time. Unfortunately after birth, I had really bad chills and it was difficult for me to even hold the baby. My doula did help me try to latch for a minute but baby was falling asleep and I was miserable because of the chills. At the time, I did not think much of it but after the fact, I have wished many times that I could re-do that first hour and just push myself to hold him that whole time or wish that I just never had the chills. Hopefully things are different for my second baby.

A: Tell me more about your first week. What were your goals versus what really happened?
L: The first week was a blur. The first 3-4 days, we tried to feed him at the breast every time he was hungry but within minutes, the baby was screaming inconsolably. So after 10-15 minutes of trying to breastfeed, we would start to syringe feed the baby while he was sucking on a finger. I was just hand expressing my milk at this point but started to use the pump on day four, after we went to the first IBCLC. We also started to use the bottle for feedings, still introducing the breast every time he was hungry. I was nervous about using a bottle because of nipple confusion but it was so difficult to use a syringe once he was eating larger amounts (2+ ounces). The goal was to get baby latched at the breast but the ultimate goal was to feed the baby breastmilk, regardless of what it took.

A: How long did you exclusively pump? What helped you get through that time?
L: I exclusively pumped for 5 weeks. The primary motivator for me was that my baby continued to root around on my chest when he was hungry and show interest in the breast, even though he never really latched.

A: Tell me about those first times trying to latch, what would happen?
L: For the first few weeks, anytime we tried to latch, it was the same reaction. Baby would root around, we would cradle him at the breast and he would move his head back and forth around the nipple, search for the nipple with his hands, etc. and then get frustrated really quickly when he could seem to get it in his mouth and he would cry inconsolably. He would continue to cry until he started to get some food from the syringe and/or get to suck on a finger.

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A: Tell me more about your first experience with an IBCLC? What was helpful and what wasn’t helpful?
L: My first experience was a little odd. We spent the entire first apt sitting on a couch trying to breastfeed baby while he screamed, with a few minutes spent where she felt around his mouth and did a little lymphatics to try to loosen things up. She told us to just keep trying and suggested we use a bottle going forward. She didn’t really give us any action items of things to try or work on – this was our biggest frustration. We were especially frustrated after the second appointment because it felt like more of the same…again, no action items. Although she did suggest we switch to using a Phillips Avent bottle to help baby open his mouth more to help him learn to latch – I do think this helped him a lot in his journey to breastfeeding.

A: What do you think was your turning point?
L: There were a few turning points in our journey. One turning point was when we started to do paced bottle feeding, baby seemed a little calmer at the breast and would try a little harder, sometimes getting a little mouthful of breast but he couldn’t get any suction to stay on the breast. Another turning point was when I visited the LLL meeting and they encouraged me to meet with the second IBCLC – the second IBCLC was so encouraging and gave me so many incredible exercises to do and resources to follow-up on. And of course the final turning point was the upper lip tie revision and then when baby latched right on 10 days later.

A: You mentioned that you took your baby to the chiropractor for adjustments. Did you notice any difference with latching after, behavior, anything else?
L: I love the chiropractor! The biggest difference I noticed was in his behavior – baby was so calm after the adjustments. He also had some mucus at one point and after the chiropractor, it cleared right up. Honestly, I never noticed a major difference with breastfeeding after an adjustment but I definitely feel it helped baby boy feel better. He had some bad subluxations in his neck and I think it is more comfortable to move his head and to nurse on both sides now (he did better on the left side before several more adjustments).

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A: When did your baby first latch and breastfeed and what were your feelings about that first latch?
L: At five weeks old, 10 days after his ULT revision, baby was refusing the bottle for 15-20 minutes and my husband suggested I try to breastfeed – he latched right on! And his latch was great. We were both shocked! But SO HAPPY. And so excited! We celebrated with dinner that night.

A: Tell me more about your employer’s “Mothers at Work” program. Do you know where people can go to find more information about the program (employers or employees)?
L: The “Mothers at Work” program is aimed to support working women – it is offered through LifeCare. They provide 24/7 Lactation Consultants to help you establish breastfeeding and then general support for the transition back to work. Here is a link with more info about the program: http://www.lifecare.com/mothers-at-work/.

A: You had thoughts of giving up and even put a date on the calendar of when you wouldn’t try (latching?) anymore. You became neutral about breastfeeding. Tell me about what led you to those feelings? What made them ultimately change?
L: My husband was the one that had the idea to set a date on the calendar. It was around baby’s 3 month birthday. That was when we decided we would stop investing so much money and time into trying to breastfeed and stick to exclusively pumping. Until then, we were pretty dedicated to working with our second lactation consultant, CST, and the chiropractor to see what they could do to help us meet our goal of breastfeeding. I am a very logical person so when we set a date, it helped me to know this period would not last forever. My second lactation consultant also reminded me that baby was not “rejecting” me by not latching and to let go of the emotion because that would make it easier to keep problem solving – I think this is ultimately what helped me to feel neutral about breastfeeding. I also logically reminded myself that baby was still getting breastmilk and the nutritional benefits, which was what was ultimately most important to me.

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A: Tell me more about your experience with the breastfeeding support group meetings that you have attended. What have you found helpful from the other mothers and leaders and would you recommend a struggling mother to attend meetings?
L: The main thing I found helpful was just hearing so many different experiences. No one experience is the same. My favorite support group is the breastfeeding support group hosted by my current lactation consultant every two weeks. These settings are very open and I feel so comfortable openly breastfeeding there and learning from other moms.

A: Your baby had a tongue and lip tie revision-tell me more about what happened with the doctor. Were you able to try latching in the office afterwards?
L: The revision went great! The first 30 minutes with the pediatric dentist were spent doing the initial evaluation of the ties – we determined our baby only had the upper lip tie (no tongue tie) and he asked if we wanted to do the release there. We went into another room where we swaddled baby in a SwaddleMe blanket and then they numbed him – he cried a little when they numbed him with the needle – then he fell asleep while they did the laser cut. They showed us how to do the massages and gave aftercare instructions and we were on our way. We didn’t get the chance to try to latch in the office but baby was so sleepy, I don’t think he would have been too interested. The dentist was extremely kind and patient.

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A: You mentioned skin-to-skin quite a bit in your post. Where did you learn about this? Do you think that it helped your baby ultimately be able to latch?
L: At one of the LLL meetings I went to, one women said “I think most all of the challenges we face in breastfeeding can be solved with skin-to-skin.” I think that reminded me early-on of the importance. I had also read several studies in pregnancy about the importance of skin-to-skin and it was stressed in my breastfeeding classes. I think this did help baby to ultimately latch because he could always smell the milk while on my chest. Whenever I was home, if I wasn’t holding him skin-to-skin, I was often wearing him in a stretchy wrap skin-to-skin.

A: Tell me about your experiences with the Craniosacral Therapist versus the Chiropractor? Was one more beneficial than the other? What differences did you notice?
L: I feel like a CST and Chiropractor are very different. A Chiropractor focuses on the spine while a CST does gentle touch therapy more on the cranium. CST takes much longer as well. I feel like they both served their own purpose and benefited in different ways – the chiropractor aligned baby’s body while the CST loosened the tension in the jaw and through baby’s head. I noticed a huge difference in baby’s behavior after both treatments, mostly that he was much more calm. Although baby did try to latch more particularly after CST.

A: You talk about the first time your baby started refusing a bottle and you ended up latching, at 5 weeks. How did you feel during that nursing session?
L: It was incredible! I was in shock. There was a small part of me that was worried it was a one-time thing so I tried not to get too excited but I just couldn’t believe it! It was very obvious there was milk transfer as well which had definitely never happened before.

A: You also mention that you tried several tips and tools. Which one was your favorite and why?
L: My favorite technique is the “flipple” – essentially holding above and below the areola, holding the nipple between upper lip and nose and then when baby opens wide, flipping the nipple into baby’s mouth. This allows baby to get a big scoop of breast tissue. It works really well for my little one, especially because he tries to latch on really quickly and gets frustrated if it doesn’t happen perfectly soon enough.

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A: Do you have any final words for a struggling mama?
L: My final words…if breastfeeding is important to you, don’t give up. It is so worth it! Everyone has a very different journey but continue to problem solve and make it happen. It is the sweetest experience to successfully breastfeed your little one. And just know, if it is not working, that’s okay and your baby loves you all the same, your bond is just as special. Stay strong, mama! Breastfeeding is such a beautiful gift.

Thank you for sharing your story with us Liz.  If you would like to share your story with me please contact me.  I would love to share your breastfeeding story.

Mother’s Stories: Tori and Otto’s Tongue Tie Story

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The following is a story shared with me by Tori Caswell of Oklahoma.  I first heard her story in March this year.  She has shared it publicly before but has gone through more since then.  I am beginning a project to give a voice to mothers and share their breastfeeding stories, especially their tongue tie stories.  The following is the account by Tori.

In her words: I’m a homeschooling mama of 3 boys. I love being outside, walking, biking,  running and swimming. I also love being inside baking, writing and reading. I’ve recently taken up sewing and have a goal of making stockings by December!

Otto is our third child, third son born on September 21st, 2015. This was my third time to breastfeed. I was confident, educated and had worked as a volunteer breastfeeding support person for 8 years. I was committed to nursing him. Our problems started right away and came to a crescendo at 5 ½ months. I am unbearably embarrassed that it took me so long to let in the fact that it was a tongue-tie causing our problems. I carry a deep sadness for the suffering my son endured.

I have this blame in my hands, I keep trying to pass it off, to the pediatrician that told me “posterior tongue tie isn’t real” and that Otto wasn’t tied because he could extend his tongue out of his mouth. I keep trying to hand this blame to the speech pathologist who told me his tongue looked fine and not tied, just after she watched me let tears loose over how desperate I was to feed my baby. We scheduled a swallow study for a month out, the soonest they could squeeze us in. I had tried breastfeeding, 6 types of bottles, a Haberman feeder (which passively drips the milk in baby’s mouth) and ultimately found a syringe was the only way to get the milk inside my baby, even that, I would learn was being silently aspirated into his lungs. If I had I been giving him anything but my expressed milk he would have most likely contracted pneumonia. I wanted to blame the lactation consultant who watched me struggle to feed him in her office and told me that “posterior tongue ties aren’t a thing” and I should try a supplemental nursing system (SNS) which is this little tube you tape to your breast to give extra milk when they nurse. Here I stand though, blaming myself.

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Haberman Feeder example and chart of internal mechanism
SNS

Example of an SNS

I had literally 20 La Leche League Leaders from a Facebook group telling me “his symptoms sound like he’s tied” in response to my posts about how Otto:

  • Pulled off during letdown
  • Was noisy and fitful at the breast
  • Gagged and choked on bottles
  •  Hadn’t gained weight for a month
  • Wasn’t growing out of his 0-3 month clothing at 5 months old
  • Cried inconsolably and often
  • Had persistent thrush
  • Was overall unsettled and unhappy

When I go back and read my posts, I knew it was his tongue, but I didn’t trust myself. I wanted his pediatrician to diagnose it. I did call and make an appointment to see a dentist in OKC (Oklahoma City) who revised ties and had extra training in assessing for them, but that appointment was a month away.

I spiraled into a dark place of exhaustion, superstition, depression and complacency. I slept through my baby’s crying routinely. I spent every waking moment trying to feed him. I was growing shorter and shorter with my 2 older children. My husband would walk around the house for hours with our crying baby, so I could have a break. On March 4th, a Friday, we had yet another weight check with our pediatrician which yet again showed no growth in any way for a 2nd month. I couldn’t hold in my panic or my crazy any longer. She diagnosed him failure to thrive and we drew labs. I got a call the next day saying that his TSH was high and that they needed another sample to test for more serious things. She was thinking a hormonal growth problem. So we went to the ER and found his blood sodium was very low, dangerously low. He was admitted to OU Children’s Hospital in OKC that day.

Otto was physiologically starving, which is what was causing his low sodium. This is the reason anorexia is the most deadly mental disease, starvation is dangerous. When I look back at pictures of him during this time, I have to stop and not let it in, not unless I can go cry.

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Taken 3/3/2016 (3 days before hospital admittance).

 

One thing I’ve learned about OU Children’s as a birth doula is that they are exceptionally good at finding pathology; they will scour a mother and baby to find it and then leap to treat it, aggressively and immediately. I’ve watched the cascade of interventions play out in the context of birth a dozen times; Otto’s hospital stay wasn’t unlike that. They checked his kidneys and found them to be enlarged. They checked his kidney function, all good. They checked if he was having reflux from his bladder, no he wasn’t. They checked his heart, all good. They begged and begged me to allow them to catheterize him to check for UTI, which I eventually did agree to and yes he had one. I firmly believe that his enlarged kidneys were either unrelated to or caused by his starvation and chronic dehydration. The only doctor that would even entertain that idea was the nephrologist (kidney) doctor. The lead pediatrician continued to supplement his sodium orally for the entire hospital stay and sent me home with a prescription for sodium, which I never gave him. His sodium was checked multiple times after our stay and was normal.

3 days tube feeding

Before and After: 3 days of tube feeding, taken day before tongue revision

After 6 hours of testing, Otto’s feeding tube was placed. He had it for 3 days and had to have it replaced 2 times because he pulled it out. After 3 days of more testing, Otto’s tongue-tie was revised by an ENT doctor who came to our room. Even the doctor exclaimed, “Wow, that released a lot!” immediately following the clip he made under Otto’s tongue. It literally took 1 second and his latch was instantly better. He drained my breast for the first time in his life. I had been reading and reading on Dr Ghaheri’s website about how to stretch a tongue revision to avoid regrowth; he called it “active wound management.” (For more information you can see Dr. Ghaheri’s Aftercare instructions here.) I asked the ENT doctor if I should stretch it, he said “no.” I did it anyways.

Then the next day, I asked the speech pathologist, who had done Otto’s swallow study the previous day and found his silent aspiration, if I should stretch his tongue and she said, “no.” I did it anyways. I would have danced in the halls naked if it meant that we weren’t going back to how things were before the revision. The feeding tube was removed the following day.

Otto’s weight went through the roof. It went from 20-30 grams every 24 hours (3 days of tube feeding 2 ounces every 2 hours) to 130 grams overnight, with unlimited access to the breast. I overheard the nurse giving report, “he’s been taking the breast a little bit here and there, 5 minutes at a time.” I interrupted them even though I wasn’t included in the conversation. “He’s actually been gorging himself, filling himself to bursting and it takes him less than 5 minutes to do it.” Blank stares.

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Otto sleeping with a full belly, first feeding after his first revision; he emptied my breast for the first time, I was overjoyed.

Over the following days, I met Otto for the first time; content, fed, happy Otto. My heart was soaring and I will be totally honest, I really enjoyed the break from my older children and from cooking and cleaning. We made friends with the cleaning woman and all our nurses and doctors and even some other patients. I pulled Otto in a red wagon through the halls, smiles everywhere.

On our last night in the hospital, I woke up in the middle of the night having a terrible nightmare, hyperventilating and screaming at the top of my lungs. Deeply disturbing imagery I still can’t speak about. The nurses came running in checking on Otto and finding him ok but stirring because I was being so loud. I couldn’t speak, to ask them to take him out of the room so I could regain my composure, two nurses stood at the bedside, quietly staring at the monitors, which were off because Otto was better and discharging the following morning. I tried to explain what had happened, I called my husband and tried to calm down. Finally a nurse came in and took Otto out of the room long enough for me to calm down. I heard Otto crying from the hallway, the nurse had started undressing him and weighing him because measuring him was their only way to comfort me, to assure me that he was ok despite my terrible dream.

We were discharged 7 days after admittance on a Sunday, the 14th of March.

before and after copy

There are 9 days between these photos.  The After is the day we discharged from the hospital, he had gained nearly 2 lbs.

 

My worst fears became a reality as we settled into our rhythm at home. Otto started pulling off the breast at letdown again. My supply dropped again. I called and made another appointment with the dentist who does laser revision and she got us in that same week. The 2nd revision took place on March 31st. The improvement was much slower and the recovery more painful I imagine as the cut was deeper. At this point Otto had suffered months of starvation, followed by tube feeding, poking and prodding, a scissor revision during a week long hospital stay, 2 weeks of 4 times a day oral stretches and then a 2nd revision (laser) followed by 3 more weeks of 4 times a day stretches. All this could have been avoided had my pediatrician known how to diagnose posterior tongue-tie or I had the guts to treat him for it despite her denial of it.

 

I wanted to believe that our system is set up to help mothers that have breastfeeding problems. I wanted my son’s pediatrician to know how to help us or who could help us, but she didn’t. Suddenly as our whole journey sinks in, the hospital stay, the scissor revision and then laser re-revision, I remember watching babies not latch, not gain, milk supplies tank, mothers battle sore and bleeding nipples and persistent thrush outbreaks. I suddenly realized that most of them were dealing with undiagnosed ties. They had come to me to help, but I had to tell them, “some babies don’t latch”, “some women can’t produce enough”, “some yeast just never goes all the way away”.

My experience with my tongue tied baby has left me humbled, hurting and jaded. I started this journey with very little trust and faith in our medical care system and have emerged with even less.

I feel susceptible to becoming a conspiracy theorist about this topic. I’ve learned that I myself am tongue tied and it’s led to many discomforts and traumas in my life. Colic my first year of life, constant ear infections, tubes placed in my ears, terrible overbite that required 9 years of braces to correct, removal of 4 adult teeth to fit my teeth in my mouth, mouth breathing that has led to terrible tooth decay and removal of another tooth, constant dry lips and neck and jaw tension. All these things could have been potentially avoided had my tie been recognized and resolved in my babyhood, but how many professionals then would have lost me as a patient and my parents as a customer. I’ve since learned that people aware of ties that work in hospitals like NICU staff and lactation consultants are given gag orders to not mention ties because they are not there to diagnose any condition. I’ve since learned that my situation is not unique and that ties are being missed by not just pediatricians but IBCLCs and ENTs and discounted as not causing breastfeeding problems or tooth decay problems or speech problems.
I want to see change. I want ties to be taught to all these professionals and more. I want treatment to be swift and for suffering to be avoided. I made folders containing all the information I could find for every doctor’s office in my town that saw babies and children, for our local ENT physician, for the IBCLC and the Speech Pathologist I saw. It’s how I began my emotional healing. I want to see a film made on this topic. The research is there, it’s been done, more is being done. My story is one of many.

otto happy daddy shirt

Otto, thriving and growing after his 2nd (laser) revision.

Tori is a birth doula in the Stillwater area of Oklahoma.  You can visit her website here.

If you are a mother interested in sharing YOUR story please email me at ashley@nurturingbonds.com.  I would love to hear and share your story.  All stories can help other mothers-positive or negative experiences.