Executive Summary

I had a thought today that I would like to know the answer to. With so much publicized research being done on the properties of breast milk (antimicrobial, stem cell properties, brain development and so on), where is the research into real lactation problems? Where is the safe approved drug to increase milk supply (Metclopramide isn’t really ‘safe’ and Domperidone isn’t really ‘approved’), where are the actual diagnoses for supply problems? Maybe companies would rather head toward synthesizing the properties of breast milk rather than helping to fix bodies to produce it. After all it’s only several hundred thousand women a year, and formula does exist (my tongue is so far into my cheek it might poke through…)

I don’t know. I suspect there is not a satisfactory answer.

So I leave you with this. A short guide to various posts that are intended to be helpful.

I need help:

How to interview a Lactation Consultant

11 things a Lactation Consultant should know how to do (IMO).

Do I need help?

I find my tongue tie resources out of date, though you can see my experience here. For better information I would urge joining this Facebook group. They maintain lists of providers and are fairly knowledgeable about what is to be expected. If a provider is not on their list people can often recommend local alternatives (for instance I know of at least 4 laser tongue tie release places in New Zealand now, but none has made the general list. Do see the New Zealand Tongue Tie resources page instead.)

I need to combination feed-how do I do this?

The big fat Combo feeding FAQ

Walking the line

Benefits of

With low supply

SNS tutorial

Nipple confusion

Managing long term

Formula

Solids

Weaning

Body Image

What is causing this?

Able

Potential causes

Birth complications

Rare vs Undiagnosed

My most popular post

Making Milk beads

And the rest of my life.

I think I no longer feel bad, because it isn’t something I did wrong. It’s purely a medical issue.  A medical issue that some people would have me believe is my fault. A medical issue I cannot get satisfactory treatment for and that is largely undiagnosed. That makes me mad.

I lie. I still feel bad and somewhat inadequate, but I no longer feel guilt. I do wonder how much of my feeling bad is a normal level for someone suddenly faced with a non-life threatening failure of a body part. Somehow I can’t imagine people feel a mix of loss of gender identity and self loathing after losing a kidney or having a splenectomy. Or losing a finger or a limb. I’m sure there are other mixed feelings but I wonder how often self hatred/loathing/failure is a part of that.

Moving on from low supply.

Other than the frustration of feeding my second, things went well all things considered. I mean I had moments (many) I wanted to stop and it was more difficult in several ways. One because I had more support.

Back to that in a minute.

Another one was that I knew what my end goal was. With my first I was struggling on because I had been told I couldn’t, that I would fail. With Miss M I knew I could come out the other side and have a time of normalcy with a nurseling. And besides, she would love me no matter what.
Back to the more support thing. I lined up a supportive midwife and didn’t really have anyone around me telling me that I was terrible for using formula or anything. I had some stress in the hospital as midwives argued about how things would turn out, and brief moments of false hope that things would be normal, but it was not to be. My midwife I think thought I was crazy and wanted to give me permission to stop. I had a great online due date group (note: I highly recommend getting one of these. I joined a local parenting forum, mine was associated with a magazine, and when I became pregnant joined the month due date group. We formed a facebook group, there are about 30-35 of us, and it’s fantastic. Local is key, because you can swap tips about sales and local brands. And meet up! With my first I was a member of parenting community primarily UK and US based. So not really local at all. Also much larger and impersonal. I really think 30ish is the ideal number of people to be civil online.), and a weekly breastfeeding group attended by an IBCLC who was familiar with major breastfeeding issues. All around I felt like no one would judge me if I did stop. But I knew what I was aiming for so it was all personal drive, not some misplaced feeling of needing to prove I could do it. I knew I could. And if it turned out I couldn’t there would be people there to say well done you. If I had had that support with my first I would have stopped I think. But I didn’t and that’s how I have succeeded twice now. But wanting to stop is not a form of failure, nor should it be a source of guilt. It’s just a symptom of frustration. This time I knew my frustration was temporary.

I’ve come to think that so much mommy war crap is very first world problem-esque. Even low supply. Yes, it’s a big and valid problem, that is not as open, treated or acknowledged as it should be, but the guilt and regret is very much a western world bullshit thing to feel bad about. A bit of a tantrum which is negatively reinforced if you will. Our perceptions are skewed by the way we live. Yes, we have an inability to nourish our babies alone but in ‘the wild’ we would not be alone. Ok, not unless you were homesteading or repopulating the world. Much like we aren’t meant to be alone in the weeks and months after having a baby, and yet we often are. Yes it can feel raw and horrible and heartbreaking, and I’m not disputing that, but I posit that those feelings are a mixture of betrayal and being thwarted in our choices, combined with various breastfeeding movement backlash baggage. Betrayal as we’ve been told that we can do it-and then we can’t. Breastfeeding backlash baggage in that even though the issue is becoming more well known it still is not widely accepted so you have people disbelieving you, questioning your commitment and motivation. As if it’s a contest, or endurance event, rather than keeping a baby alive by any means necessary. Thwarted in that this was something you made the choice to do and that choice is taken away from you. I think the emotional repercussions from that is largely a construct of the other two. If you could not do some other choice would you feel so bent out of shape about it? Not likely…until people disbelieve you, question you, badger you and tell you the option you do have is wrong, repugnant and harmful. That leaves you as a sad little ball of raw despair.

All I can really say is that parenting is so much more than the first few years, yet these years are consumed with ideals to do things the right way and when the right way, like breastfeeding, does not work out, or goes poorly we become bitter; consumed with sadness, guilt and regret, because honestly we don’t have bigger problems. Our first years ideals mean well, but the jealousy, the warring, the guilt of if you are stimulating your baby appropriately, enough, right, the worry if you are doing things the ‘best’ and frankly, fashionable way…. it’s all so much bullshit. There are righter ways and wronger ways to do things but so much of the hype sold to us in packages, physical or conceptual, is entirely irrelevant. Babies need touching, feeding, cleaning. To be comfortable and comforted. To be responded to. Kids need a hell of a lot more than that. You haven’t failed as a parent until your kids don’t call you after they grow up. They won’t even remember the first years. The first years are a start but what shapes a child into a person is ongoing interaction.

With that I will leave my next post with a compilation of links on various topics. This blog is not so topical to me anymore and no one likes an irregularly updated blog. I have moved on from low supply. I hope others with this issue can as well.
Oh, it will be a fact of life with my future and last child, but that’s all.  It’s moved on from being an emotional problem to purely a medical problem. I’ve accepted it is not fixable. I will never have a diagnosis (well not unless I can find a breastfeeding clinician). And I guess it doesn’t matter. My kids don’t care that they had to be born via cesarean section, that they weren’t fed 100% breast milk. My main focus now is actual parenting and I don’t know that I will have time or motivation to navel gaze about that. I’ll be learning as I go, and my right ways, or even the ways that things go aren’t for me to judge or write a how-to manual for anyone else. It’s just going to be regular difficult from here on out, so I don’t think my musings are going to be particularly relevant.

Let’s talk formula

Because someone needs to.  So here it is from me- someone who wanted to breastfeed and supports breastfeeding where reasonable, yet used and uses formula for medical reasons. Maybe that makes me a mostly neutral party. Maybe not.

First off- everything I learned about formula is self-taught or I learned from a Lactation Consultant. A good LC, on seeing that you want or need to use formula should be able to give you some pointers. Theoretically all formulas should be pretty much the same, brand name or budget. The WHO is supposed to regulate the ingredients and basic proportions. However-sometimes things are not so straightforward.

What you want out of a formula is to have it be whey based. Not casein based. You want the from birth formula. The follow-ons  marketed from age 6 months + are not as well regulated and unnecessary (though they are often cheaper…). If your child requires supplementation beyond 1 year, full fat cow milk can be given (or mixed with formula if you are concerned about diet or intake).

Cow milk is recommended because growing brains need fat. If your child does not like cow milk to drink (mine didn’t), just be sure to supplement with other high fat foods alone or in cooking. Food such as- avocado, cheese, coconut oil or cream, peanut or seed butters, butter, cream, lamb, olive oils, and so on. For extra calcium try various vegetables like kale, alfalfa, etc and fish like sardines, salmon etc.

Back to formulas. Whey or milk solids should be the first ingredient. Maltodextrin is a common additive and should be around the 3rd-5th ingredient. It is sometimes seen as the first ingredient- this is not necessary and may make your baby eat more- its a carbohydrate that is digested quickly.

If you are combination feeding you do not need any special formula. Any birth to 12 month one that suits you is fine.

This sort of thing

4seURmZ

Image credit

Is straight up predatory marketing. I was always ambivalent about formula companies being big and bad and preying on the breastfeeding mother, but yeah. Not after seeing that. I’m pretty sure people are eating it up too. I’d hate to be more cynical but I’d imagine that if the one on the left cost more people would be paying for that too.

Let me reiterate: You do not need anything special to combination feed. No formula is better than any other. In fact less is often more.

Some reading on safe formula use can be found here http://info.babymilkaction.org/infant_feeding/formulafeeding

Take 2: When you think you know what to do and are so very wrong.

Now that we have put the SNS away at home, a little earlier than with the first kid, I should get what I learned from my difficult second child down somewhere.
Well I say difficult, but she was difficult only because of my milk supply issues.
She developed very minor jaundice early on. Not enough to worry anyone but enough to get really really sleepy.

By 6+ days old we had to institute a waking and feeding schedule and we had to continue waking her for feeds until well over 2 months of age. Yay baby sleep you might think. Yes, on one hand this was nice because my first did not sleep and instead ate all the time. Sleep also makes it possible to do hard things. Like lots of pumping. But with low supply you do want an eager baby stimulating your supply. So every 3 hours I had to wake her up and then came the 1-2 hour long ordeal of keeping her awake through feeds just in time for the next feed to start. Every 3 hours 24 hours a day. Blargh. Wet cloths, undressing, blowing in her face, and even icepacks on her feet. And because she was so sleepy and not able to get enough from me part of this routine came to involve force-feeding with a bottle. She came to hate the bottle. In fact she hated anything not a breast in her mouth. Maybe having her tongue tie and upper lip tie lasered at 3.5 weeks oversensitized her but she developed into an orally particular baby.

As I knew how to use the supplemental nursing system I was eager to do that rather than bottles, but she became quite particular about the tube in her mouth. The medium tube which had a faster flow was not acceptable and occasioned screaming if it even touched her. The small tube was never fast enough initially (not that she seemed to care…) and often feeds would take over an hour to complete (even into her 4th+ month). Instead of latching her with the tube near her upper lip I started sliding it into the corner of her mouth around 7-8 weeks and that was the only thing that would work. If she detected it she would fight to get it out, preferring plain breast but of course that wasn’t an option. She developed aversions to one breast and for a while even one position because of association with the tube and I had to exclusively use it on the other one.
She made feeding my first look easy. Sure with number one I had low supply and I was learning as I went but after working out the initial technical problems and difficulty it became routine and predictable. Not so this time. Things were always irregular and a struggle if not an outright fight. I was tracking her intake, output and weight gain until nearly 7 months, where I pretty much stopped the tracking with my first by 3-4 months as things were so routine. The part that bothered me most was that she could not be trusted to self regulate with milk. she would stop and if we let her do that she would not gain appropriately so there were minimum intake volumes she had to meet. This often required waking her up and trying to get more milk into her. So it was a chore.

Things that helped with this difficult baby?

  • Primarily putting the tube in the corner of her mouth. Here is a short and not very good video.

She so very much hated the texture of the tube that putting the tube against her upper lip lost us some breastfeeding positions for a while as she came to associate them with tubes in her mouth. The latch wasn’t great but it was hard to fight about drinking and fight about latch. Especially when she preferred to slip down.

  • Using the NG (naso gastric) feeding tube in a bottle. I was at the point where she would not feed in several positions, would not take the Medela SNS tubing the ‘right’ way and would not take a bottle and I thought I would have to finger feed her or start syringing milk into her mouth. Its a very frustrating position when you want and need help but you know that you know more about alternative feeding methods than any professional you might ask for help. I got one of these NG tubes-which by the way is fairly stiff and inflexible- and stuck it in the corner of her mouth…and away she went. It wasn’t bothering her.

So I then learned how to sneak the SNS tubes into the corner of her mouth. The SNS medium tube is far more flexible than the NG tubing but not nearly as thin and flexible as the small SNS tubing (case in point I have been through multiple small tubes as they develop pinholes just from regular use. At least 2 per child. I have not had to replace the medium SNS tubing through 2 children, but then I don’t use it every day either). But I learned to stick both of them in the corner of her mouth. And things worked. Mostly. Sure feeds took 20 minutes for ~60ml supplement on a good day (and 40-60 minutes on a not good feed- keep in mind this is after 10-20 minutes of regular breastfeeding). And the tube would wiggle and it would need a lot of adjusting (this is why I was happy I had the Medela SNS because when liquid is being consumed you can see air bubbles. Not possible with NG tube in a bottle method), but it worked. But maaaan was I glad to put it away.  No excitement that I was finally meeting her needs (+solids), just relief to be done with such a tedious fussy feeding regime. She’s been fine with plain breast. Which was part of the problem, as that is what she preferred and was not an option because of my supply.

Lesson learned. Never think you know what you are doing.

Not trying hard enough

Not trying hard enough is a phrase that has haunted me most of my life. For a long time it’s been applied vaguely at me in regards to weight loss. Despite my counting calories, and measuring or weighing most everything I eat and seeing no results. I bought into the idea that I must be doing something wrong and that I wasn’t trying hard enough. Now that I’ve finally (finally!) been diagnosed with PCOS I can give myself a little bit less of a hard time.

When breastfeeding went wrong and people actually said to me that I needed to work harder and that I wasn’t trying hard enough (also see: lazy, uneducated, and so on) I again bought into the idea that I wasn’t trying hard enough and it ate me up inside. I mean so many people were saying (mostly without knowing the specifics) that there must be something I was doing wrong.

Thing is, in a normal situation these things are not rocket science. They are simply not that hard. When you aren’t in a normal situation though, all bets are off. There are lots of variations on not normal, so be cool and give support.

This time around has been a really different experience for a lot of reasons. If I had more time I could write guides about horrible sleepy fussy babies with oral particular-ness and how much more this low supply gig sucks when you also have a toddler.  Most importantly though I know this time I am totally awesome and actually pretty damn hardcore for being able to do this.

I ran into some internet comments the other day espousing the same old tired bullshit that low supply is ultra rare and that people who say they have it are all a big bunch of lazy liars and blah blah blah. It made me a bit weepy because I’d forgotten how many of that type of ‘lactivist’ there still are. Here I’d been thinking that recent media exposure on the prevalence of breastfeeding issues had somewhat changed the landscape in the past two years. Ha, I say. Ha.

Someone else in the same stream of comments said something along the lines of ‘Well 99% of pancreases work so diabetes is ultra rare and you only think you have it’. Someone else countered with ‘Don’t eat 50 donuts a day and expect your pancreas to work’. I then thought, if anyone told a type 1 diabetic that eating donuts caused their disease they would just be convinced that person was a moron. Put it all in perspective for me. Anyone who ever thinks I didn’t or I’m not trying hard enough I can automatically dismiss as a moron.

Phew.

A fate worse than death

Sometimes I feel like not being able to breastfeed is viewed that way. Losing milk supply is a major worry for breastfeeding mothers. It rubs me a bit the wrong way when people who have successfully breastfed children so far start taking supplements and munching lactation cookies when their breasts don’t feel as full. Especially those whose babies are gaining well above the 140-210g/week.  Seriously makes me wince and/or want to pull my hair out.

Meanwhile all along I’ve been drinking teas, eating a lactation friendly diet, popping pills and pumping quietly. Quietly because when you are open about your lactation insufficiency people don’t know where to look. It’s something people openly say they fear and worry about but when it happens no one is sure what to say. Is sympathy the right response? Is telling people that it doesn’t matter if they breastfeed or not appropriate? Not really to either of them. Simple sympathy- I’m sorry- is probably the safest. Lately I feel that it’s almost more acceptable to talk about death than persevering through lactational insufficiency. It just makes people feel awkward. Some of them want to tell you you are wrong, others it scares.

But when people with normal supplies ask about how to help their milk supplies I grit my teeth and give them tips.  If no one else has given advise first. I admit I drag my feet. I mean I think I understand. I have to meticulously track volume and my child’s weight and I worry when top-up volume is dropped. But when you are fully breastfeeding you don’t have any type of gauge other than output, and intermittent weigh ins, which may not be all that satisfying. So hard breasts means there is plenty of milk there for the taking and is thus a comfort factor. I must be unusual in that I initially trusted my baby and my body to do what was correct despite evidence to the contrary. Over-education isn’t all great.

 

Deficient.

I do often wonder if there is something mentally wrong with me for doing this mixed feeding malarkey. In my cynical moments I see myself as a mother willing to risk starving her child out of stubbornness. At this point I know my breasts do not lactate appropriately. There is no tricking, hoping or stimulation that is going to make that not be the case. I don’t think formula is that bad or I’d maybe motivate myself to get some donor milk. Despite that I am now citrus, tomato, brassica, onion, garlic, pulse, and gluten free to keep my baby reasonably happy. Yeah if you’d told me ever that I would be on a restricted diet feeding a baby through a tube I would have thought you were crazy. But here I am. Anyhow. But at some level I can not let go of breast feeding and go completely over to the bottle and formula. Now that we are at the point where it isn’t complete hell to mix feed (seems to be 12 weeks is the magic hump) I seriously wonder what is wrong with me.

I see mothers blithely (so I imagine though I’m certain the reality included tears) say that they stopped breastfeeding due to low supply and I wonder why not me? Since this method is definitely not the standard way of dealing with low supply I do wonder of those that have low supply how many would like to be educated about management option and how many prefer to stop outright.

Last time I persevered because it was a giant fuck you, a because-I-can to everyone who told me I couldn’t. This time, in light of a tricky, overly sleepy baby who is not easy to feed and is orally particular, I wonder why I am so stubborn and dangerous.

I do know that once solids are established my feeding rig will be packed away and things will be…normal. Is that reason enough though? To deal with 6-7 months of difficulty for another year of unfettered breastfeeding before I have to encourage weaning and do it all again?

It’s certainly been harder with two. The mixed feeding takes more time than a healthy breastfeeding relationship so the older child misses out. We had planned three children when we were being logical (before kids) but the idea of doing this feeding regimen again is depressing at minimum. The only thing that makes me consider doing this mixed feeding thing again is that we can self wean. The perks of being the youngest.

Why a correct diagnosis is important.

Or how wait and see doesn’t cut it.

For the first 8 months of my first child’s life I thought I had low supply, probably from insufficient glandular tissue. I wanted a definitive diagnosis though and couldn’t find anyone to give me one. Then around 8 months, after we’d transitioned to just solids and breastfeeding and put the SNS away in the closet I noticed something that led me to believe that a posterior tongue tie might be the real problem. I couldn’t get a diagnosis for that either, but the more I read and researched a tongue tie did seem to be present. That discovery filled me with hope. Hope that next time would be different, that there was something I could do to make things better. So I planned my next breastfeeding experience around that. I lined up tongue tie release, made my midwife aware of my history and suspicions and mostly did as I was told- to wait and see because this time things might be different. I was told different child, different mouth shape, maybe no problems this time. I was dubious, and didn’t use as my midwife anyone who refused to take my concerns seriously, but I did get some variation of wait and see from everyone I talked to.

Just to hedge my bets I drank various teas throughout my pregnancy and made all my postpartum meals full of lactogenic ingredients.

And then I had my second baby, not how I planned, in fact things went in a way I hadn’t thought to plan for, but I had her and it was ok. Not great, not bad, but ok. And there was an obvious tongue tie, not a posterior one, and there was some waffling about whether it would cause problems from the hospital lactation consultants, and my midwife went to bat for me and we got it snipped anyhow. It made the latch a bit better and things were going normally. We were proceeding with caution, and I was getting some varying opinions on whether intake was good. Some people said looks good, some people were concerned about swallow frequency. I was a little stressed out, but I was assured that if I hadn’t had any history that no one would be worried. I was cautiously optimistic. Things were already different and better by leaps and bounds in terms of latching and output and weight loss.

After 5 days we went home. My milk came in, though there wasn’t engorgement as such, just a feeling of fullness and heaviness. I wasn’t too worried. After all some women don’t have much engorgement, right? Yes, but. Be concerned when you keep running into signs and symptoms that by themselves don’t mean much but when accumulated paint a more dire picture.

We’d had 8% weight loss by day 6. Well within normal ranges. Considering last time we’d had 11%+ by day 5 and more after that, 8% was fantastic. Output was good, my optimism was increasing. There was still concern about swallow frequency, but things seemed to be going well.

By day 11 only 60g (2oz) had been gained. Normal newborn weight gain should be at least 30g/day. I’d been expressing milk on top of feeding to boost my supply and to give as top ups to combat the cluster feeding. My midwife wanted me to get more than 2 hours sleep per day to help my milk, and also because having a toddler and a newborn isn’t sustainable on 2 hours of sleep out of 24.

The baby was sleeping more and more. We were feeding on demand, but where #1 had screamed and cried and never slept unless held, this one would sleep for 4+ hours, fall asleep at the breast and was generally very lethargic. I was pumping 4-6 times per day on top of feeds, and giving that milk via the SNS. Output was still good.

And day 15 came and the weight was the same as at day 11, 210g below birth weight. And the baby was so lethargic at that point that getting her to take a bottle was over a 1 hour affair of cold cloths, stripping, changes and so on for 60ml consumed.

So now we went into disaster management mode. I was to give 60-100ml via bottle every 3 hours day and night and pump afterward. We practically have to force feed the baby at this point.

It’s been a few days of that and hopefully birth weight will be regained in another day or two and we can revisit other feeding options, or even go back to feeding on demand.

And that’s where we are now. I wish we’d known before that IGT was the issue. I wish I’d been able to get that diagnosis. I could have been using the SNS from around day 10 or before and doing test weights to measure intake rather than disaster management of a lethargic and dehydrated baby.

Now I’ll likely have to contend with nipple confusion, breast refusal and possibly losing any kind of breastfeeding relationship. I might still be able to pull this situation out of the fire, but a diagnosis last time would have made this easier.

 

Postmortem

I’ve been thinking about why some diagnoses make sense for me and others do not.  I’ve done mental lists before but I think it’s past time I did a postmortem analysis of my breastfeeding experience. Not that it’s dead just yet…

My midwives told me that it was my supply. So I pumped and I pumped, and I fed and I took herbs and domperidone… and it didn’t really seem to help. For a long time I thought baby not getting enough milk to gain weight or poop, and I can’t pump it out means it’s not there, right? Not necessarily. When my daughter was around 8 months I noticed a lip tie and read about the correlation between that and posterior tongue tie. So then I thought that was the issue, but I can make some points in favour of several causes.

I’m not sure the best way to group this. Maybe a reason for, reason against section for each suspected issue.

Symptoms in support of IGT:

I have breast asymmetry. It’s fairly noticeable. I also have stretch marks, though I’d assumed they came from puberty. I actually remember the time when my left breast grew bigger than my right. I was probably about 12-13 (I was in junior high because the memory includes wandering around that day in the halls with my hand clamped over one breast because it hurt so badly). I just remember it being painful.  My breasts look a lot like one of the pictures in the MMM book.

I don’t think that I had engorgement after birth. I did have a bit of warmth and itchiness, but not the hard breasts my midwives led me to believe I should have. Which is false anyhow, not all women have that symptom even with a normal supply.

Symptoms against IGT:

My breasts have always felt fairly glandy. If that’s a word. They aren’t very soft, instead tending to be firm. I’ve noticed them floating in the pool for the first time since I’ve had my baby.  I’ve never really gained weight in my breasts and they don’t seem to be primarily fatty tissue. As I said, glandy. I was always good about getting my yearly exams when I lived in the US (things are 3 yearly here if everything’s been normal, which it has for me), and that usually included a breast exam. You’d think someone (one of the at least 5-6 different doctors I’d had do breast exams) would have said something if there were not much tissue there… Then again, maybe not.

I tended to leak. I mean, not buckets, but changing my baby in the middle of the night, her crying would give me a wet shirt. Easily 5ml from one side and maybe 2 from the other. Also sometimes when I was feeding the other side would leak. Not enough to collect, or really  need pads, but enough to be messy.

This is a bit odd. I have some extra nipple tissue on one of my areola. So, while my breasts were not really engorged, that area swelled up like a blister. It got about peanut-in-the-shell sized.  I could get milk out of it, but it wasn’t easy. Apparently it was connected to some ducts as well.

When I was in the hospital after giving birth I had to hand express some colostrum. My baby would not initially latch well, she couldn’t open her mouth wide enough and when I tried biological nurturing style she shredded my nipples and gave me hickeys, preferring to latch onto any surface she could like a little suckerfish. Anyhow, as I was hand expressing colostrum the hospital midwives commented that at least my supply wasn’t a problem.  I know that colostrum production and milk production are not necessarily related (that is amount of colostrum does not indicate amount of milk), but it’s always made me doubt that supply was my problem, even when I was told it was.

While I don’t think my breasts did grow much during pregnancy and after, I know they did because bras from before pregnancy (still) don’t fit me. Also I had significant nipple pain during the first trimester.

I have had engorgement before to the point that one (just one, the other one has more fat on it I think) breast looked like a sack of peas. I went 15 hours without feeding or pumping when I had to travel for business. I had been accustomed to going 10-12 hours without pumping at that stage (my daughter was 11-12 months old), but the extra few hours made a big difference in comfort.

Symptoms for undiagnosed tongue tie

My baby has a lip tie for sure. She also was not able to hold herself on the breast until she could do it with her hands at over 6 months old. So I had to hold it in her mouth or it would fall out. Pacifiers (dummies) fell out of her mouth.  Even now she either holds them in with her teeth or her hand. Not that she’s much of a fan, they are more something to bite. She would leak milk when drinking from a bottle. She shredded my nipples early on. It wasn’t until 8-10 weeks that I didn’t look like ground meat from the cracking, and all the missing bits grew back. With some improvement in latch technique it didn’t hurt much after about 2-3 weeks. I did have nipple creasing for months. Since she got her upper front teeth I’ve felt them digging in to me somewhat, and she does leave little tooth indentations on me.

Her tongue has been forked in the past. As she gets larger and stretches it the fork has significantly lessened. For a while she was not able to touch her upper lip, but now she can. Nowhere near touching her nose, but she can now get the tip of her tongue over her upper lip.

She does have a ‘fence’ in her mouth per the Murphy manuever, though I can’t use Dr. Kotlow’s method of checking since it’s now a game to bite me when I try to feel what her tongue is up to.

When she touches her tongue to her upper lip the floor of her mouth tents up (as does mine…), and the sublingual salivary glands stick out (again, as do mine).

She has only rarely drained the breast, though that’s hard to gauge because my breasts don’t ever really seem to go totally soft because of the glandiness.

Symptoms against undiagnosed tongue tie

She has a pretty mobile tongue. I don’t see much inhibited movement to be honest, though I’m mainly comparing to myself, which is not a fair comparison, and she has been working on it as I try to gauge her tongue mobility by making faces at her. Perhaps it’s improved as she’s gotten bigger. She doesn’t have much in the way of frenulum either, though I know with PTT that can be the case.

Symptoms for PCOS related complcations

I suspect my grandmother had some form of PCOS. She told me she got her period at age 10. I got mine at 11. I have elevated androgen levels and issues with carbohydrates and my weight. If I do have some form of PCOS the onset was when I was around 20. One lactation consultant told me my issue was probably PCOS related (no breast exam for me, no oral exam for the baby though).

Symptoms against PCOS related complications

I have completely regular periods (I’ve been irregular twice I can think of and once was after a miscarriage). A lot of doctors have hinted at PCOS, but no one has ever felt able to make a diagnosis. While I do experience mittelschmerz, no cysting has ever been observed during ultrasounds.

Other ‘what does it mean?’ issues:

I was living in an agricultural area before and during puberty. I had also been consuming large volumes of soy products (dairy free from 8 to 13, then dairy and soy free) and been put on various calorie restrictive diets by my family from age 8 including a diet from age 13 to 17 that did not allow me to eat sugar, wheat, dairy, soy (as I had developed an allergy), any fruit other than grapefruit and lemon. I also experimented with veganism during this time (though that didn’t last long). I skipped a lot of meals, not eating for up to 12 hours at a time (sometimes longer) until I was in my early 20’s.

Fenugreek did not work for me. I couldn’t take enough to get the ‘smell’ and I didn’t see any difference with the amount I was taking (up to 12 pills daily. I also tried spoonfuls of soaked seeds as well as fenugreek seeds cooked with barley and tea made from a spoonful of seeds). Domperidone seemed to decrease my supply, or at least my let down. Blessed thistle made it so I did not have to supplement at night times and fennel and oatmeal were some of the more helpful things I tried. Anise seed, licorice root, red clover and nettle were also helpful. Vitex increased my supply, though I didn’t try it until after 12 months.

I’ve been lucky enough to have a fairly robust, if apparently insufficient,  milk supply. Since pumping at work and altering my pumping schedule until I no longer pumped I noticed that it would take at least a week to stop feeling discomfort from a missed pumping session. I only ever pumped 30-50ml per session combined. I expect the 18 hour per day feedings and excess pumping in the first 6 weeks helped me lay down adequate prolactin receptors so that my supply remained robust.

Prior to getting pregnant I had been having 9-11 day luteal phases with spotting before my period started, which can indicate a hormonal issue. However, this was for the months in between a miscarriage and getting pregnant with my daughter. I had not previously experienced much spotting before starting my period. I do expect that a 10 day luteal phase is more or less normal for me though.

I didn’t get my period back until nearly 16 months postpartum, and only after much cutting down on breastfeeding. I make the supposition that the inefficient sucking, as well as the numerous night time feeds,  delayed it’s return because sucking stimulation releases the oxytocin which inhibits menstruation.

Oh, then there were the array of potential medical issues. I lost 600ml of blood, which is within normal for a C-section, but if I recall correctly over 500ml can cause issues in some people. I had an emergency c-section. I was overhydrated both before and after birth because of my blood pressure being so low (to the point of breast edema, though it didn’t delay my milk, which came in, such as it was, on day 3). I had low platelets. Not dangerously low, but enough to be mildly alarming. I had been taking iron pills in my second and third trimester, but had run out early in my third trimester and my midwives didn’t think to give me more. So I could have been anemic.

What might have been

I’ve had some passing retrospective…introspective? Something ‘spective at any rate, moments of late of what might have been. Wondering what kind of person I would have been if we’d not had these issues. It kind of makes me afraid. I wonder if I would have been as inflexible and uncompromising as I see some people be on the subject of breastfeeding issues. Part of me doesn’t think so though since I am prone to compassion. I certainly wouldn’t have the ability to empathize quite as strongly as I do now. I think it takes staring choices you never thought you’d have to make in the face to really get some things. I do know that our problems have made me a better, and certainly more complex, person though. I’m certainly more thoughtful about how other peoples struggles are not my own.  I read somewhere recently that exceptional people consider others just as able as they are if not more so. That people who have succeeded consider others more able than they are. And that really hit home for me. Because I have often wondered, why me? Both as to why this happened and to how and why I got through it.

I never really considered myself that out of the ordinary in terms of our struggles. I mean, unusual to be having them, I suppose, but once I got into dealing with things I certainly didn’t feel extraordinary in any way-except that I was alone with my struggles. People in similar situations to me either met their original goal or went a different way. There was no one else who was defining alternate goals on the fly and making those work.  I guess that I consider myself mostly lucky despite not having any help. Lucky that I stumbled on the fact that the SNS existed (and found somewhere to buy one), lucky that my baby latched on,  lucky that my baby tolerated the SNS, lucky that being told over and over again that I couldn’t do this made me mad instead of stop.

I certainly understand communities of women who have faced breastfeeding difficulties (the Fearless Formula Feeder community springs to mind) being fiercely defiant over their eventual choice and outcome. Finding solidarity over what ended up being best for them and being proud that they are better people for their struggles. I feel the same way although my choice was different, and thus more isolating, than most. Most every community I’ve found is either banded together over something I only share peripherally (which has made me an object of suspicion), or a collection of people bound together over their isolation. Which doesn’t exactly make for much of a community…

I’ve talked to a lot of people experiencing issues with breastfeeding. I’ve referred those who asked to what I did that worked, to the support I’ve found along the way and of those one has taken my advice on support networks (MOBI), and none have found my experience or advice particularly helpful. I suppose it was faulty of me to assume that just because I would have loved some support from someone like me that anyone else would be grateful for advice from someone who’d been there, done that and made it work for them. Which leaves me wondering, why me? Previous to these experiences I would not have thought this would have been something I was capable of.

A big part of becoming happy with how things are (other than time, which heals most wounds) is extracting myself from negative influences. Without people telling me that even though I was doing something tricky with little to no guidance that I was ‘actually’ failing by their definition, or alternately that I should stop doing something that was working for me in order to make my life easier caused me no end of heartache. Because I kept searching for somewhere to ‘fit’ I endured more pain than I needed.  And of course the eventual realization that I did do the right thing. Finally being able to look back and feel a tiny glimmer of pride at what I did do, whether or not it worked, or if it was what I’d planned. I did that. I helped grow that little person not through our struggles or what I fed her but through love and parenting. So no matter what I’m glad I’m not what I might have been because me, now, is better. My little toddler certainly has her priorities straight. What her baby-doll needs most are apparently kisses and hugs.

So this kind of means I don’t want to go looking for things to write about because there are some scary uncompromising people out there.

So with that I’m winding this thing down to the extent there won’t be bi-weekly, or maybe even weekly posts. Certainly for now, but who knows about later? How I’ve been operating lately is write a bunch when I have time and auto-schedule the lot. But I don’t have anything much scheduled. I have a few posts readied for various circumstances and occasions (watch this space for a tutorial on making milk jewelry), but nothing regular. I might even start publishing my previously mentioned journal on a semi-regular basis. And if I see or think of something I may, or may not, feel motivated to write something up, but not going to be making the effort to be weekly, or potentially even monthly.

Or I could add a parenting subsection and go on about that…