Friday, August 5, 2011

Why Penelope Couldn't Nurse

Yesterday, I started typing up this blog post and by the time I stopped to take a breath, it was almost book length.  It is far too much information for one blog post.  I really think our full story deserves to be told in book form.  How that is going to happen, I am not sure, but a girl can dream.


I want to finally wrap up our saga, in honor of World Breastfeeding Week.  I want to tell you about exactly what the physical issues we had, that created the perfect storm of our EXTREME breastfeeding problems.


You can read the back story here:
Make Your Boobs a Happy Place
What To Do If Your Baby Won't Nurse


These were our problems, in a nutshell:


  • I have flat nipples.  Not totally inverted, but flat.
  • Penelope was severely tongue tied. 
  • She had TMJ on the right side of her jaw, from her Atlas vertebrae being out.  The misalignment of her Atlas vertebrae caused all the muscles in her neck and jaw to tighten and spasm.  It was painful for her to lay on her side and it was painful for her open her mouth.   I am still not sure how her Atlas vertebrae got out of alignment.  It's either from when I fell on the stairs, 2 weeks before my due date, and landed on my sacrum, or from her being head down and engaged in my pelvis for a long time, she was head down and ready to go, months before she came out.  And she was kind of coming in at a quirky angle.  Sometimes, Atlas vertebra's can be pulled out of alignment from trauma in the birth canal (ie. being yanked out with forceps or vacuum suction), but we had a peaceful, water birth, so I am convinced it happened at some point in the womb.
Here's what I did to fix the problems:
  • flat nipples:  If flat nipples were our only problem, the pinching to latch technique, pumping to draw out nipples, nipple extractor and nipple shield would have worked, I am sure.
  • tongue tie: She had one frenotomy at 6 days old, and another deeper cut at 8 weeks.  I never got a 100% clear answer from our pediatrician or the ENT we saw, but after reading mountains of information on posterior tongue tie, I am convinced that is what Penelope had.
  • TMJ/Atlas:  This one was the tough one, it took me almost 3 weeks to even figure out that she had TMJ, then another week to get to the right chiropractor that knew what he was doing.  First, we went to an Acupuncture Dr,  a Chiropractor, then an energy healer.  The energy healer told us to go to a cranial sacral therapist, he told us to go to another cranial sacral therapist who also does physical therapy and energy healing.  When we went to her, she also did work on expanding her palate.  Penelope had a narrow and small palate and she wasn't getting the sensory she needed from the top of her mouth to suck properly. That therapist, told us to go to a certain Chiropractor that specializes in Atlas vertebrate issues.  When we got to that Chiropractor, he took x-rays and sure enough it was out.  He adjusted her one time and fixed it for her. We go back every six months to check it and it's always fine.  He also taught me massage techniques to relax the muscles of the jaw and work on fixing her TMJ.  Since I am an LMT, I did this myself, but if I wasn't, I would have taken her to an LMT for this as well. 
  • To help her get back to the breast:  After we did everything, got her tongue tie and TMJ fixed,  then we went to an Acupuncture Dr. who also does cranial sacral therapy, once a week for several months.   We worked on strengthening and coordinating her suck, relaxing her jaw muscles, creating a positive association with my breast and even my milk.  We also went to a speech language therapist that specialized in infant sucking disorders.  She also taught me techniques, to strengthen her muscles and tone, to help her nurse, but to also make sure she didn't have any speech delays from not nursing (nursing develops proper jaw and tongue muscles for later speech development) and from her tongue tie.
Throughout all this, we went to several IBCLC's as well.  I never tallied up the cost of all these appointments, I am too afraid to know.  I don't care what anyone says, breastfeeding is not free!


The biggest lesson I would like others to take from this, is that if your baby is not nursing, even with help from an IBCLC, and going to a cranial sacral therapist (usually if nothing is physically wrong but baby and mama had a rough birth or had to deal with some booby traps from the get go, cranial sacral therapy can get things back on track), something is wrong Go to a chiropractor right away.  I did take her to one within the first two weeks, but he was a total quack.  You must find one that specializes in children and cervical vertebrae issues.


Ok, so I hope that helps.  While I wait for a for magical book agent to appear in my life, please email me with any questions you have, or comment below.  If you are having trouble with breastfeeding, I will stop everything I am doing to help you.

***
celebrate-wbw-npn-450

I’m celebrating World Breastfeeding Week with Natural Parents Network!
You can, too — link up your breastfeeding posts from August 1-7 in the linky below, and enjoy reading, commenting on, and sharing the posts collected here and on Natural Parents Network.

(Visit NPN for the code to place on your blog.)


16 comments:

  1. OMG! I can't believe you went through all of that to succesfully breastfeed. AMAZING! I fell in LOVE with breastfeeding after having my daughter (now 8 months old), but while nursing is never "easy" we did not have any huge issues. Now that I know so much about bfing I would fight harder if my next baby has any issues. But as a first time mom, I find it incredibly brave and inspiring that you went through all of that and never gave up!! Props for you!! Penelope is one lucky lady!:)

    ReplyDelete
  2. Stephanie! Can't believe no one commented on this post (unless I missed the list) Anyhow, I love your story! I just wrote about chiropractic care for kids this week!

    I'd love for you to share this story on my recently new link up, Healhty 2day Wednesdays! (until Saturday every week) Do you have GFC?

    ReplyDelete
  3. @Wildali...thank you! So glad to hear you are breastfeeding!
    @Rachel...I have comments on moderation right now, so I publish them all when I have a second to sit down at the computer. I would be thrilled if you shared it. I am not sure what GFC is though?

    ReplyDelete
  4. Wow, you are super tough and strong to make it through all of that. I wish sooo badly I would have stuck it out with nursing. I think if I had seen ur blog I would have reached out and prob continued!! Gonna give it my all if God blesses me again with another baby!!! Where is ur business located?? I am very interested b/c I am infertile and would LOVE to work with you if u are in the GA are????

    ReplyDelete
  5. Hi Stephanie, we've spoken before about how your post "making your boobs a happy place" really helped me with my problems breastfeeding my youngest.
    What I'd like to know is do you have guilt? I know my son couldn't nurse because of his physical problems, but I still have such a hard time with the guilt.
    Like you, I've done everything within my power to help him, and I've been pumping for him for over a year now, but it just doesn't feel enough.

    ReplyDelete
  6. I also had a huge struggle with breastfeeding. I had a beautiful home birth, baby had an amazing latch, but we went through a (false) positive for galactosemia, recalled formula during that time that wrecked havoc on his digestive system (ER visit), then low supply (weight loss, then no gains), a failure to thrive diagnosis and a week long hospital stay. I'd breastfeed for 45 minutes, pump for 20, then start the entire process over again in an hour around the clock, took every supplement, dranks tons of water, oatmeal, everything. It took me a long time to really understand that a GREAT breastfeeding relationship didn't diminish because I had to supplement with formula. I really appreciate your story- I haven't come along many people in the natural birth community, unfortunately, that understand that having a 100% EBF on the boob nursing relationship isn't as easy or "natural" as it may seem. In 5 days I'll have breastfed for a year, despite all the obstacles.

    ReplyDelete
  7. @Dana...thank you! I got your email and sent you one back, would love to work with you.
    @Jeanette...guilt is still something I deal with, for sure, although it is not all consuming. I felt very guilty for stopping pumping at 18.5 months. I felt like to be a perfect mother, I should have two years and met the World Health Organizations guidelines. I think guilt and motherhood are just gonna go hand and hand. If you figure out the magic trick let me know!
    @Brandy...thanks for sharing. I am sorry to hear you had a traumatic beginning, but that you are still breastfeeding! Good for you. Pam England, the founder of Birthing From Within, said the definition of trauma is when our preconceived ideas about how things should be, fail to be, we are traumatized. I can imagine how hard it was/is for you to supplement. Blessings to you.

    ReplyDelete
  8. Thank you so much for this post! I had major issues with my first two girls. I have flat nipples and supply problems, and neither of them could get a good latch. I am pregnant with #3 and bound and determined to make it through the problems this time. I really appreciate your advice :)

    ReplyDelete
  9. @Greener Grass Academy...best of luck to you!! Let me know if you need anything.

    ReplyDelete
  10. Stephanie, you are right guilt is an occupational hazard! I haven't figured it out after six children, so don't think there's much hope really. x

    ReplyDelete
  11. My first born was tongue-tied pretty bad, too. His poor little tongue was heart shaped because of it. I was not at all prepared for that kind of issue with the breastfeeding (we had other issues, too, but the tongue-tie started everything off bad). And nobody would give us a straight answer as to whether or not to have it cut. Everyone said it probably wasn't affecting him and his feeding, nor would it affect his speech later, when clearly, it was affecting his feeding. It took nine days before we finally could get an ENT to cut. Nine days! If I could go back, I would have made an appointment while still in the hospital, and as soon as we were discharged, gone straight upstairs to have it cut at 2 days old. Thanks for sharing your story. More moms need to share their struggles and victories so that we can continue to help each other.

    ReplyDelete
  12. @Mandi...I agree that can be one of the hardest parts about tongue is just finding a damn person to cut it, in a timely manner. 9 days is actually pretty good. I have heard of other mothers not getting it done till 4 months!

    ReplyDelete
  13. Thanks for sharing your story! My second daughter Angie was severely tongue tied. At 3 days old she had laser surgery to correct it (against all nurse and pediatrician rec). My doula caught the issue in the hospital and without her, we would have not known.

    Breastfeeding her was a constant challenge. She had trouble latching and would not stay on the breast for longer than 3-4 minutes. Saw two lactation professionals (plus my mom who is trained) to know real avail.

    Engorgement, mastitis, thrush, bleeding, you name it, we had it! She had a second laser surgery to fix her tongue at 3 weeks.

    We made it just about 8 months and then I threw in the towel! She is a happy, healthy one-year old now. I figured nursing the second child would be a breeze. Boy was I wrong! I love nursing and would not have done anything differently.

    ReplyDelete
  14. Did you ever try breast shells for flat nipples? I've had great luck with them in the past (I'm not a lactation consultant, I'm Newborn Nursery/Post Partum nurse & avid breastfeeding supporter). Then again, I haven't seen any around here in a while either. I LOVE the Lansinoh Latch Assist too!

    Is it common in your area to wait so long to clip tight frenulums? We do most of them prior to discharge; one doc doesn't like to clip them & sends her patients to our pedi dentist, but she usually tries to do them soon.

    ReplyDelete
  15. I soo soo wish I had found your blog when we were going through a very similar and tough start to breastfeeding. But we are still going strong at 7 months!!

    ReplyDelete
  16. @Colleen...thanks for sharing. Congratulations for making it 8 months! You sound like an awesome mama!
    @Amber...oh yes, that was one of the many contraptions we tried. I have been meaning to do a post on all the crazy things I bought while on this journey!
    @Amanda...yay! so glad to hear you found me and that you are going strong, lots of love to you.

    ReplyDelete