Monday, May 20, 2013

A Breastfeeding Story- Overcoming A Lip Tie and Severe Cracking


I am really excited to share something a little different than the usual.  A mom sent me her breastfeeding story and it is WONDERFUL.  It isn't an easy story but it teaches a lot of wonderful lessons about finding the right help with breastfeeding and persevering even when it is difficult.  I love that this mom was triumphant (I believe) with ALL of her babies.  In the end she is able to nurse successfully after diagnosing and treating a lip tie and a tongue tie.  Having the right knowledge makes all the difference.
Enjoy!

Before my oldest daughter was born in October 2008, I was sure of two things:
  1. I wanted an all-natural birth.
  2. I was going to breastfeed.
But at the time I didn’t realize how much I didn’t know ABOUT those two things. My daughter’s birth didn’t go as I had envisioned it, and breastfeeding wasn’t at all as I had imagined either. Within days of her birth, both my nipples had developed extremely painful ulcerated sores. I was in agony, dreading every feeding, putting it off for as long as I could, crying and tensing when she latched on. My daughter was a slow nurser, and I thought that I was supposed to keep her on until she unattached herself (this may work for some babies, but I there is NO way my daughter was actively eating for those lengths of time). At first I thought the pain and the sores were normal, my sister had told me that it would hurt in the beginning. Then my midwife came for a home visit when my daughter was a couple of weeks old and told me that though it looked like my daughter was latching on well, my nipples shouldn’t look like that. She asked if I wanted to meet with a lactation consultant and I said sure.
So at two and a half weeks post-partum, I went to see a lactation consultant. When she saw my nipples, she said, “I wish you women would come to me sooner, before your nipples get into this shape. That one looks like it could use a stitch.” Then she went on to watch me nurse my daughter, not saying much about my daughter’s latch, but criticizing me for using a pillow (“it’s a crutch!”) and for using the football hold (“what are you going to do when she gets too big for you to nurse her like that?”), which was the only way I could deal with my daughter’s flailing arms and floppy body. She made me try nursing without a pillow, in the cross-cradle hold, once again not really focusing on the latch. She gave me a prescription for Dr. Jack Newman’s All-Purpose Nipple Ointment (APNO), with a dire warning not to use it for more than five days because the steroid would thin out the skin, a prescription for domperidone (a medication whose side effects include milk production), and she gave me a medical grade double pump, also to use for five days. 
So I pumped and bottle fed my daughter for five days, and in that time my nipples only barely started to heal. I put my daughter back to the breast, only to have my nipples immediately become just as painful as before… And now my baby was only interested in nursing the foremilk. She would unlatch and scream when the milk flow slowed down.
I was a first time mom. I was in constant agony (with a bout of mastitis on top of everything else). I didn’t know what I was doing. My hormones and my emotions were going wild. No one TOLD me what a proper latch was, and I didn’t know enough to go find out for myself. No one told me that I had options other than bottle feeding while I was pumping. So I gave up. I decided that I wasn’t going to try to breastfeed anymore, I was just going to pump. 
For a month I was able to borrow the medical grade pump and I got my milk supply fairly well-established, only needing to supplement about 1 – 2 ounces of formula a day. After the month was up, I started pumping with a hand pump because we couldn’t afford to rent or buy a better one. It took a lot more time, but I was able to get nearly as much milk with it. I pumped until my daughter was 7 months old, my supply slowly dwindling. I obsessively recorded every ounce that I pumped and that she ate. She was a horrible bottle feeder until she was about 3 or 4 months old; it sometimes took over an hour and a half to get the milk down. By the time I stopped pumping, my nipples were a dark purple all the time from the stress the pump put on them. I suffered from post-partum anxiety and felt that I had failed somehow as a mother, although a lot of people told me that it was amazing that I had pumped for that long. Oddly enough, when I stopped pumping, I started feeling better in a lot of ways.
Before my son was born in April 2010, I had already decided that either breastfeeding had to work or I was just going to formula feed. There was no way I would have enough time to pump with a newborn and an eighteen month old. I was better prepared in every way this time, both for the birth and what followed. I didn’t struggle emotionally at all. My sister had read a book called Dr. Jack Newman's Guide to Breastfeeding by Jack Newman and Teresa Pitman, and she lent it to me. I devoured the book, learning the importance of a proper latch and how to do it. 
When my son was born, breastfeeding wasn’t immediately easy, but right from the beginning it went better. When it seemed that my nipples were going to start developing sores again when my son was around 5 days old, I went into a walk-in clinic and strong-armed a dubious doctor who had never heard of it into giving me the prescription for Dr. Jack Newman’s APNO (yes, it is the same guy who wrote the book I read), and used it for a couple of weeks and the sores never developed. By about three weeks post-partum, everything was great. My son was a champion nurser; he was so efficient that he would have milk running out of his nose as he sucked. By two months, nursing sessions were lasting a total of maybe 10 minutes total, and by 4 months, they were about 7 minutes. I worried that he wasn’t getting enough, but his weight gain was great and he never cried for hunger. It was a balm to a wound I still carried from my experience with my daughter. I wasn’t broken, I COULD breastfeed. (And I used the football hold with my son too, until he got too big for it, and then I switched to a personally modified cross-cradle hold with absolutely no difficulties. And I used a pillow for most of the time that I breastfed him too).
Armed with the knowledge that I could breastfeed, I was blindsided when I had problems when my third son was born in January 2013. Breastfeeding was awful again… The ends of my nipples developed scabs and they just stung and burned long after every nursing session was over, and I had extremely painful vasospasms (and don’t even talk to me about showers). At five days post-partum, I thought I would review the breastfeeding information on Dr. Jack Newman’s website (nbci.ca), and discovered that I had remembered wrong about how latch they baby properly. 
So I fixed the latch and within a day the ends of my nipples healed. I thought I was in the clear and that it would only get better from there until I noticed that my nipples were developing cracks along the base. I was mad. What was going on? I nursed through the pain, and while my nipples were ridiculously sensitive, the pain wasn’t as bad as it was with my daughter, I think mostly because of the placement of the sores (I did have a better latch with my son, so they developed at the base rather than the ends of my nipples). I was using APNO, checking his latch every time, and still the cracks got wider and wider and more ulcerated and more painful. I treated my nipples and my son’s mouth with gentian violet, thinking it might be thrush, though there were no indicators of it.
I was in despair, though I wasn’t in the pits like I had been with my daughter. I KNEW I could nurse, so that was a big help for my state of mind, but I was being driven crazy, trying to figure out WHY this was happening. I researched breastfeeding issues and solutions feverishly on the internet. I tried all kinds of things (breast shells, hydrogels) but nothing was helping. Everything I read said to keep my breasts free, but I had to wear two sleeping bras at all times because the least bit of rubbing was just unbearable and caused them to become more raw. And I couldn’t expose them to air because the vasospasms were so awful. In my research, I kept coming across forums where moms talked about lip ties, but I had no idea what they were talking about, I’d only ever heard of tongue ties. 
When my son was five weeks old, I was looking in his mouth yet again to see if I could determine if he had a tongue tie, when I noticed that the frenulum on his upper lip looked a little funny. It came all the way down his gums and wrapped around onto his palate. I was like, “Huh, does mine look like that?” I felt it with my tongue and it seemed to stop above my teeth a fair distance. I looked in my older son’s mouth… His stopped above his teeth too. I was starting to get a little excited. I looked in my daughter’s mouth… Hers came right down her gums too. I looked in my husband’s mouth… His stopped above his teeth. I hurried to the computer and googled images of lip ties. My younger son and my daughter both had severe upper lip ties, and probably tongue ties as well, since they almost always go hand in hand. I started to cry; my nursing issues with my daughter hadn’t been completely my fault. I felt relieved and exonerated and sad for how it had all happened. When she had been born, they checked for a tongue tie, but she had a posterior one, which isn’t as obvious as the regular tongue tie, and no one had checked for a lip tie at all.
I emailed Dr. Jack Newman and he told me that they clipped tongue and lip ties at his clinic in Toronto. That night I called my doctor at home and excitedly told him what I had discovered. He was a little confused at first and he probably thought I was a bit crazy, but he told me to come into the clinic on Monday and he would take a look. 
On Monday I took my baby to the clinic in the middle of a massive snowstorm. My doctor had researched tongue and lip ties over the weekend, and readily gave me a referral to Dr. Newman’s clinic. I got an appointment there for about a week and a half later and we travelled 1200 kilometres to see him. At the clinic, I saw a lactation consultant before I saw the doctor and the experience was night and day from my first one. I walked into the clinic, ready to be on the defensive about my breastfeeding pillow and the football hold. 
I was immediately relieved to see that the room they saw me in had all kinds of pillows in it, and they told me to use whatever hold I was comfortable with (although they wanted me to try the side-lying position. I can’t figure that one out, and don’t think I would like using it anyway). The LC told me that she could tell he had a lip tie just by looking at his face; the area between his nose and upper lip was bluish, and his upper lip kind of stuck out a bit. They clipped his lip and tongue ties. It took about ten seconds and I had to sit down, haha! Poor baby cried for a while, although I stuck him right on the breast and that eventually calmed him down. I could tell that his nursing was different right away, his sucks were stronger and longer. I left with Mepilex (a wound dressing), and another prescription for APNO. We had a rough evening, but he was just fine after that and never even noticed when I rubbed the wound sites to make them heal properly and keep the ties from reattaching.
I returned home, expecting that now my nipples would start healing and that everything would be great, but no such luck. The damage to my nipples was so severe, the cracks sucked open so wide, that there was just no chance that they could heal with the constant pulling and rubbing on them. I emailed Dr. Newman in desperation when my son was 9 weeks old, asking about hand expression and pumping. He emailed me back saying that this was often the time that nipples started to heal on their own, as the baby’s mouth got bigger. So I waited another week, with the pain getting more severe on my right side all the time. 
Finally, at 10 weeks, I visited my doctor, with the idea of getting a prescription for domperidone and hand expressing for a few days until my nipples healed. He took a look and said that my nipples would take at least 2 weeks to heal, even if I left them severely alone and didn’t touch them at all. I couldn’t handle the thought of possibly losing my milk supply for good, so I hand-expressed from my right side and bottle fed, and then nursed from the left. I was so extremely fortunate that my son was fine with both. I had sworn that I would never pump again, but after 4 days of hand expression, my milk supply dwindled alarmingly, so I caved and began pumping from the right. All in all, it took 3.5 weeks for each nipple to heal completely and I was pumping for just over a month in total. After 2.5 weeks of pumping from the right, my left side became too painful to nurse from, so for a week I pumped exclusively from both sides. All during the time I was pumping, I used the Mepilex wound dressing and the APNO (and my skin never thinned…).
There were times when I felt like this ordeal would be never-ending, that my nipples would be forever painful and never healing… There were times when I was tempted to kinda sorta think about maybe giving up, but mostly I was just stubbornly determined that I WOULD feed my son breastmilk because I knew I could. I thank God for the experience I had with my older son. I was even prepared to pump for months if I needed to. But my ordeal did end when my son was four months old, my nipples did heal, and I am so so so grateful and relieved that breastfeeding is working again. 
In the end, I think there were a lot of factors for why my nipples cracked this time. The lip tie and tongue tie were definitely contributing factors, but my own skin had something to do with it too. I am really prone to stretch marks (as in, my skin isn’t very elastic), and in the winter my skin is really dry. This year winter went on forever and was very cold and very dry and I’m sure that had something to do with it as well. Mentally I never felt like I was in danger of depression or anxiety this time (though I did have several good cries about it all), but now that I’ve been nursing without pain I realize just how wonderful it is to not have that underlying dread all the time, counting down the minutes to when I’m forced to feed my baby, sighing with relief at the end of the day because I have a good 6 or 8 hour break from nursing. I hadn’t really realized how much of my time and energy went into worrying and stressing about my breasts until I was free of it. Now I just hope he doesn’t develop into a biter, haha!
I don’t really know if there is a moral to this story, there just isn’t a lot of information out there about long-term trauma to nipples, other than what I came across in forums, so I wanted to share my experiences... I want to tell women to get help when you need it, from someone who is actually helpful. I live in a remote area, and most of my help came from the internet, particularly Jack Newman’s website, which I would recommend to anyone. And don’t give up, it is usually worth it to do the hard work and stick it through to the other side (although not at the cost of your peace of mind). 
Also, if you are having these kinds of issues, you’re not alone. Sometimes we can feel guilty or unworthy or something like that when everyone else is talking about how breastfeeding is beautiful and wonderful and amazing and how close they feel to their babies when they’re feeding them and they just love it and blah blah blah, and you just feel like ripping your breasts off because they’re not working right. In reading the forums, a lot of moms with these kinds of long term, non-healing sores seemed to find resolution at around 16 weeks. I thought I would never be able to make it for that long, but in the end it did take four months and I did make it, one day at a time (I am glad I didn’t know how long it was going to take in the beginning, though!).

4 comments:

Unknown said...

Thank you for this story. I have finally discovered what the problem was when I tried to breastfeed my daughter 15 months ago. It makes me sad that more doctors/lactation consultants don't check for this. Perhaps my daughter and I could have had a successful breastfeeding relationship :(

Melissa Kelsey said...
This comment has been removed by the author.
Mellysa said...

Thank you so much for posting this story. I had many of the same issues breastfeeding my (now 3-year-old) daughter, but had never heard of lip ties before now...turns out she has one! It's nice to have answers now and to know that the lactation consultants who told me "She's latched perfectly, it shouldn't be hurting. There's nothing wrong" were incorrect. I now know what to look out for when our next Little arrives. :)

Sarah Malloy said...

This is a revelation for me. My dentist identified my 6 year olds lip tie.I did further research on it when I noticed my son has it too. My 6 year old could never breastfeed..I gave up. Emotionally I couldn't be there for her with the stress of it. I feel robbed of that bond and experience. It also explains why she hated soothers and anything silicone. .it hurt! My now 10 month old son is currently still breastfeeding. He's had latching issues from the start. When he was born he lost 10% of his birth weight and again I was made to feel like it was my fault. After reading how lip tied babies don't eat as much at once and get tired fast, I now understand my baby better. I always just thought he had a good appetite. I also never clued in when my son would cry when I lifted his lip to see his top teeth. My daughter is having her frenectomy at the end of the month to prevent her teeth from staying gapped and help her bite. I'm definitely now considering it for my son.

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