Most of you know my story, about being diagnosed with Insufficient Glandular Tissue.
I still go back and forth in my head about whether there was something I could have done differently, something that would have allowed me to breastfeed. Perhaps it was my poor diet (I'm working to change that), perhaps it my necessary cesarean section (for the rare, but life-threatening cervical bandls ring), perhaps I didn't try hard enough.
Scratch that, I knew that I had worked my butt off trying to breastfeed my daughter, exclusively.
For those of you who don't know my story, I'm going to share it now. Although, I'm going to attempt to shorten my experience - because it's complicated, and emotionally agonizing. It started pre-pregnancy, when we were just trying to conceive (which took eight months, although I wasn't charting anything or closely following my menstrual cycles, or basal body temperature). I knew, that I was going to give birth at home (although fully aware that there was a possibility of transfer). I knew that I was going to breastfeed (I knew of all the hurdles that a breastfeeding woman can experience, but not about IGT).
So, going on 42 weeks - I started having prodromal labor. Then, I started having actual labor. The entire process took 76+ hours (that's how much time my midwife, her assistant, and our doula was there, there are many more hours not accounted for). Around hour 72, we started to discuss the possibility of transferring for a c-section. My midwife gave me very few vaginal examinations throughout my labor - but she had noticed something unusual. Although I was 10 cm dilated, past my fully effaced and open cervix, there was a band. She described it as a rope-like band of scar tissue, it hadn't been there before this final check. So, she called as many midwives as she knew, and there was a consensus - a bandls ring. It's extremely rare, so uncommon in fact that we don't actually know the statistics on it (I discovered this postpartum, and I've become kind of well know for my knowledge base on this condition). It's unknown what causes it, too much weight, being underweight, too much salt, not enough salt, perhaps the cervix is just exhausted, maybe it's a matter of not enough electrolytes, all the what ifs that physicians, midwives, pregnant women had considered. Noone had an answer.
Thankfully, I had heard of this condition. I understood the risks, including completely bleeding out, infant distress, trauma, and demise. This meant one outcome, death - unless I gave birth by c-section. There have been two documented cases of women being able to birth vaginally when diagnosed with a bandls ring - knowing this postpartum (and knowing it today) I still would have chosen the c-section.
Fastforward to my recovery, my daughter was placed at my breast as soon as possible. She was slow to nurse, but once she came around - she really tried. I informed the nursing staff and the physicians that I wanted to see an IBCLC (Internationally Board Certified Lactation Consultant) as soon as they were available (which wouldn't be until about 8 a.m. that morning - she was born at 3 a.m.). One of the risks of birthing by c-section is the increased difficulty to breastfeeding, but I was determined to work through that.
We tried different nursing positions, I could tell she was receiving very little milk. There wasn't much output (urine), and she would fall asleep at my breast or get incredibly frustrated. I saw one of the two IBCLCs at the hospital (the second one was off during my stay there) - my experience was less than optimal. I was, almost initially, that not all women could breastfeed - and that was okay.
WHAT?
Here I was, a woman who considered herself fairly knowledgeable about breastfeeding - and an IBCLC was telling me, off the bat, that I may not be able to breastfeed. She made comments about my nipple size, areola size and coloring, that these things could all be hindrances. When my milk still had not come in, I began using a hospital grade pump - finally, some colostrum (after hours of pumping) appeared! It wasn't enough, she wasn't gaining any weight, and the pressure from the pediatrician on staff was immense. It was a matter of her gaining weight, or they would give her formula - which I would not consent to.
I had known about milk sharing, to a small degree. I knew about milk banks, and social organizations such as Eats On Feets & Human Milk For Human Babies. I also had a friend, at that time, who had offered me ounces of her frozen breast milk - when she offered initially, I had rejected it. I knew that my milk would come it, that our daughter would gain weight, that I would breastfeed exclusively until she self-weaned. When it wasn't coming in (still totally normal, especially since I was stressed about it not, thank you medical professionals), I accepted her offer. Instead of going straight to the bottle, we used an SNS (supplemental nursing system) - which most of the hospital staff had never heard of, let alone seen in use!
From the first moment, it was troublesome. The tape didn't want to stick, I couldn't get it connected right (meaning milk leaking everywhere). Since the milk was leaking, it loosened the tape, then it would just be a dangling tentacle hanging around my nipple. The other "problem" was that my infant was smart, she figured out 15 minutes in, the first day, that it was essentially a straw. She neglected both of my nipples for focusing directly at the tubes - phenomenal. We worked with the SNS for three days, around the clock, learning on our own since the IBCLC really didn't "get it". Different positions, different taping methods, alternating breasts. None of these methods worked - she only saw it as a straw.
We finally went home, where I went on nursing, around the clock, supplementing only when she expressed that she wasn't getting full. We bought a very expensive breast pump (we couldn't afford a hospital grade pump, and renting didn't seem cost effective at the time) - and I pumped, every 1.5 - 2 hours. Even when she didn't wake up during the middle of the night, I set an alarm, and I pumped. I power pumped, I attempted hand expressing the milk (which produced no results). I was averaging about an ounce, between both breasts. It was then that I started educating myself about galactagogues, herbal medicinals that claim to increase breast milk supply and breast tissue.
Everywhere I went, I was recommended to try fenugreek, which I took in copious amounts - all that resulted in was my skin smelling sickly sweet of maple syrup. However, I continued, I took that and goats rue and blessed thistle - I ordered "More Milk Plus" from the MotherLove Herbal Company, and took the maximum amount every single day. I was still trying to nurse around the clock, power pumping, and an oncoming case of postpartum depression. I would look at my infant, watch her attempt to nurse, fall asleep at my breast (either one), and then wake up screaming in hunger. I would cry myself to sleep, and cry while I was pumping, cry harder when I noticed that no drops were coming from my breasts - even though I was taking the maximum amount of galatagogues.
I spent hours on KellyMom, and Dr. Jack's breastfeeding website, not to mention different breastfeeding resources. I saw two out-of-hospital IBCLCS, who could not figure out why I wasn't producing, why my daughter wasn't gaining weight, even though I was doing everything "correctly". I spoke to friends who were successfully breastfeeding, especially those who first encountered problems (well known hurdles like plugged ducts, cracked nipples, even mastitis). They gave their best suggestions, but ultimately told me that I must not have been doing "enough". Even my midwife and her apprentic made it clear that I wasn't trying hard enough, eluding that I may have been lying about working my ass off to breastfeed. I tried every suggestion that was thrown at me, these were everything from drinking incredibly dark beer (which I later discovered was a misnomer and could actually decrease breast milk supply), eating raw oats, I made batches of "lactation cookies". I changed my diet and lifestyle, drank plenty of water (again, another misnomer).
Finally, I ordered a product called Domperidone, after learning about it through Dr. Jack's website - it took three weeks to arrive from New Zealand after going through Customs. I started taking it immediately, I knew that it could take from 48 hours to 12 weeks to notice a difference. After two weeks of no improvements, I increased my dosage. After another two weeks, I increased the dosage once again, and again after another two. I was taking the maximum amount and continued doing so for three months following. There was no difference, I wasn't increasing my production and I was still supplementing. Yet, I continued to attempt to breastfeed my daughter. I knew that any breast milk she was receiving from me was critical for a variety of reasons - I refused to use formula.
On that note, I have always been thankful that I'm relatively educated about breastfeeding and about "booby traps" (especially since organizations like Best For Babes came into fruition). During my pregnancy, a dear friend gave me a baby shower where the one thing that I requested was no formula, pacifiers, etc. Frustratingly, a woman who I had considered a friend at that time decided that she would gift me formula anyway - her reasoning, I later discovered, was because she had experienced difficult in breastfeeding and later gave up trying. I hid the formula in a cabinet we never use and completely forgot about it until we started doing out "spring cleaning" months later (it had expired by that point).
The breast milk I had currently been supplementing with came from close friends, beautiful and gracious, giving women who loved breastfeeding but had an oversupply. Some of it came from a town over (still about a 35 minute drive for us) - other times it came from Lincoln or Omaha (a minimum, 2.5 hour drive, one way). However, I was determined not to use formula - my daughter would have breastmilk, regardless of how much it cost or the stress of finding it.
I would find a way.
At four months postpartum, entrenched in postpartum depression, I realized that I had begun to resent my body. I had been searching endlessly for answers - but no one seemed to understand what was wrong with me. I finally discovered an organization, in Omaha, that had a doctor that specialized in diagnosing breastfeeding issues. I made an appointment immediately, and drove the 3.5 hours in complete anxiousness - even when I arrived the other people on staff told me there was nothing wrong with me. My daughter was gaining weight. What they didn't seem to grasp was the concept that my supplementing had turned into a full-on dependency. She had stopped nursing from me, had become unwilling to, even though I always offered my breasts first. She would look at them, then gaze at me, she would snuggle against me, and then scream.
So, when the time came to see the physician I was hesitant - if the other people on staff were unwilling to listen - what the physicians response be? Yet, I was suprised. She was more than listening, she took me seriously, and she wanted to do some testing. Having my hormones checked was the first step - where it was discovered that I was making less prolactin than some men. No wonder I wasn't producing, somewhere along the line, I hadn't developed enough breast tissue to take on the demanding relationship of breastfeeding exclusively. Where did this leave me? The physician made it clear that I should continue to try and breastfeed, any amount, no matter how small, that came directly from me was benefitial.
The next step was finding more donors, and getting off the galactagogues. I stopped taking them, all of them, at five months. Domperidone and More Milk Plus were expensive - at least in amount that I had to order them in. I had already quit eating the supply-increasing foods, and had stopped drinking the dark beer (especially after my discovery of it being incorrect). I had a few local donors, who only asked to be reimbursed for the bags they were using to pump into - not a problem, breast milk bags are relatively inexpensive.
I began connecting to my state's chapter of EOF and HM4HB - there weren't many women there, but a few who hadn't found people to donate to. I still considered this local, because I didn't have to ship. Gas is expensive, but not near as expensive as shipping across state lines. My husband and I bought a standing deep freezer for all the breast milk we were getting, another expensive purchase (but we had nowhere else to put the ounces). All of these things kept adding up, not to mention that my daughter had a bottomless pit as a stomach, she was going through 50 ounces daily at one time. No mother I had met or connected with could keep up with that type of need. Don't get me wrong, every donation matters - but to be honest, most mothers who breastfeed and pump because of an oversupply don't realize how much breast milk a child can eat in a day. So, when we would get an offer of 50 ounces - to that mother, it was a LOT (and is for most people) - but for our daughter, it was only a days' worth.
It was then, that I started looking outside my state, into Kansas, North & South Dakota, Utah, Oklahoma - and found more mothers. I would ask the mothers who had offers available about their lifestyles, whether they used drugs (either prescription or illicit), drank, smoked, etc. There were many times that I regretfully had to reject and offer with a mom I had connected to because she was on a prescription medication (often it was postpartum depression or thyroid conditions). Thankfully, there were connections, but then came the task of explaining shipping. Assisting this mom in finding a postal service that would "allow" her to ship breast milk, finding dry ice, and then reimbursing them for all of this - everything included, shipping costs ranged from 25.00 to over 500.00.
All together, we have shipped from KS, ND, SD, UT, CO, TX, CT, ME, FL, CA, WA, OK, PA and more (I frankly don't remember all the places that our milk has come from) not to mention an international delivery from Canada. I have met some amazing women, and shared my story in hopes to educate people about Insufficient Glandular Tissue (many women and healthcare professionals don't think that this condition actually exists). I have learned so much about the nature of breastfeeding, and have found that many women (even IBCLCs) come to me for answers - which I am humbled by. I never thought, even though I'm currently pursuing getting my own IBCLC (along every other birth related thing that I do) I would be that woman. Relying on donor milk has been incredibly expensive (we've spent in the thousands at this point) and has left me with a lot of stress, migraines, and fear about the future. Will I experience IGT with my next infant? I surely hope not, but I know that I will work just as hard - if not harder (should I discover another way to work through IGT) for that child.
It has also come with a certain amount of stigma attached. At this point, I hope you're still reading - because I feel like there are some very important things that "lactivists" and others need to know. Women do not deserve to be harassed for their feeding choices. There are women who choose not to breastfeed, for a variety of reasons, because they are uneducated, afraid, because they have been led to believe that formula feeding is easier (which, in my case, it would have been). In some cases, it is because they have been the victims and survivors of trauma or abuse and breastfeeding can bring flashbacks. Or, perhaps they simply don't want to. Frankly, that's their decision to make - every woman makes the decision she feels is best for her child. There are women who surrender to breastfeeding and turn to formula, and there are women - like me - who genuinely cannot breastfeed. You are not in the position of privilege to tell her that she didn't try hard enough, instead, you should support whatever amount of breastfeeding - OR NOT - that she did. If she wasn't breastfeeding, it doesn't mean that she loves her child less, she simply made a different decision regarding parenting than you did.
In my experience of IGT, I have villified, and attacked by people I have never met (thank you, Internet) for not "trying hard enough". I have been made to feel ashamed by my inability to breastfeed, and I have found that many women made assumptions about my level of education when they discover I wasn't breastfeeding exclusively. I consider myself an "assisted exclusive breastfeeding mother", because I HAVE done all the work that a breastfeeding mother has done, and I feel that I have the same relationship with my daughter that exclusively breastfeeding mothers do.
One day, I hope to share my journey with my daughter.
As we close the 13 month gap, I've noticed that my daughter is beginning to self-wean. This means many things, the first is that we are coming to the beginning of the end of this stressful, emotional, and fulfilling relationship. For me, it also means that I made it to my goal - that I would breastfeed my daughter until she decided to stop.
We made it.
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