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I find my tongue tie resources out of date, though you can see my experience here.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.

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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.

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.

 

Q: How to accept advice from people who have no clue?

A: Do it with grace or don’t ask at all.
Or is it just understanding, compassion that you want?
I rarely ask for advice anywhere these days because, perhaps arrogantly, I find that I’m not going to see anything I haven’t seen before. Yet I still have the urge to ask. Maybe because I’m lonely either via social circumstance or the rarity of my personal situation. So I was thinking, how can one ask for advice and not be irritated by unhelpful suggestions? Well you can’t. Oh, I’m sure you can manage not to be irritated, but the unhelpful suggestions are still going to happen. So what are your options then? You can ask and know you are unlikely to get anything helpful other than vague support, or you can not ask. Pretty much that’s it.  I asked a question somewhere the other day and was pleasantly surprised that one person had something novel to offer. So there’s always that chance.
It is important to recognize that people mean well. Generally. Of course once you open yourself up by asking you do also open yourself up to those who will not understand, who will be critical, who will disbelieve. I find those to be risks I am no longer willing to take.

I suppose on that note I should say I’m going to limit the commenting and be removing some of my posts from the history. I naively hadn’t realized that my personal birthing challenges would end up being controversial and worthy of unwanted lecturing. So, while I felt my birthing issues were tangential to both my breastfeeding challenges and breastfeeding challenges in general,  I’ll keep that sort of thing off of here in the future. I’m less than two weeks out from my due date and I don’t have the time, interest or energy to deal with commenters with their own agenda who seek to educate me in the error of my ways. Or whom will use scare tactics such as the impending death of my baby to influence me or spread their message. While my posts are public I didn’t ask to be berated, nor for anecdotes supporting whatever poorly conceived point such a  person is trying to make. Those who have read the blog have probably noted that I do cite things and even when I don’t many of my points are supported in some way. What I haven’t made a point of emphasizing is that I don’t set out to use research in a lawyer-like manner. That is I do not use it solely to support a point unless there is a larger body of evidence that my citation happens to be a good example of.

I was planning to highlight a few things over the next few weeks. Colostrum collection, however, is not going well. Sure it’s there, but I’m not producing enough to collect and freeze. I say that because the droplets I do get aren’t enough to reliably suck up and when they are they get stuck in my 1ml syringes and don’t go into the body of the syringe. So I’ve decided to save my syringes for postpartum.  I might still write up some lactation supporting postpartum recipes I developed, how I feel about my preparative measures, and maybe in 5-6 weeks some progress on if I do have to fly to get my baby some surgery, or if things are unexpectedly going well.

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…

Belief in research

I was discussing some things on a blog I used to read with some people a few weeks ago. Someone brought up the idea that formula fed, or I suppose bottle fed, babies over eat. Which, you know is possible, but not something an attentive parent necessarily does. I pointed out that babies suffering from reflux, whether they be breast or formula fed will frequently overeat to soothe their throat. And that tongue ties can exacerbate (as in make worse, as that is the meaning of that word right?) reflux. And that tongue tied babies often end up being bottle fed due to lack of correct diagnoses… But I got called to task for saying that tongue tie ’caused’ reflux. Which is not what I said, and then for not providing studies on that. I dutifully provided a few papers and proceedings that referenced reflux being a symptom of untreated tongue tie, but I suppose that wasn’t appropriate or strong enough evidence. Or something, as I’ve now not had any of my further comments on other topics published on the blog. Makes me wonder exactly what I’m being censored over there. Fair enough, perhaps they don’t like me (I suspect people often don’t), but it seems a bit ridiculous. To me it seems like an appropriate place for anecdotal evidence. To me it seems a bit like if you say people with colds often have runny noses. Yes, observed, often anecdotal, and of course since colds are much more studied than tongue tie we know that runny noses are caused by a variety of things and that a cold does not always have a runny nose, and that runny noses can, in fact, happen independently of colds as well. But I can’t think I’ve seen a study talking about the relation of runny noses to colds because it’s something most people have seen enough of to know, ok, yes this can go with that, often but not always, and so on. Also, because we see colds and runny noses from them so often it seems moronic to do such a study because we know that they can, and often do, go together.

At the time I pointed out that studies are difficult to do on tongue tie since even experts have a hard time agreeing on diagnoses. I’ve also heard that doctors can be reluctant to do much about reflux as well. So you kind of have a double whammy of suck there. Regardless, there’s certainly nothing I’ve seen taking a statistically significant number of babies with both reflux and tongue tie (what classification of tongue tie?) and cutting the frenulua (was it done deeply enough? Does that have significance in soothing the problem?) and measuring the severity of the reflux before and after (how do you do that? Count the number of vomiting instances in a 24 hour period? What if it’s silent reflux?). The idea that there are NOT such studies is apparently more satisfying to some people than observations from someone who works with such issues on a daily basis (not me, but one of the articles I provided as evidence). Sure it would be an interesting study to people who care about and deal with those issues, but who’s paying?

I think for some things it’s easy to be over-reliant on published evidence. It hardly seems appropriate to discount the existence of something because there are no popular studies on it. You have to balance that with realizing how studies are designed, funded and carried out. It’s easy to pick apart studies for not taking into account various correlating factors, having confirmation bias and similar, and there are some truly badly designed studies out there. From my molecular biology point of view human health studies are messy and flawed even when they are done well. I understand the reason for it; you can’t do some of the things to people that you’d need to do to have a decent scientific control.

Now, on the other hand I’m not a huge fan of anecdotes as evidence. Mainly as anecdotes often come from someone untrained in what they are extemporizing on and are frequently used to justify doing something that studies and statistical analysis thereof have told us is not necessarily typical. A sort of  ‘nyah nyah nyah take that statistics’. An anecdote by definition is an isolated example. It progresses to an observation or an interesting correlation when the examples are no longer isolated and made by someone who sees a lot of examples. It’s an untested hypothesis at that stage, but just because it is untested does not mean it doesn’t have grounding in strong observation. From there you’d obviously need sponsorship or funding to progress to an actual research article. Probably sloppy language is to blame here somewhere. People can have wild suppositions with no grounding, call them theories (when a theory is really a highly tested hypothesis) and thus lend faux credibility to their imaginings.

Further compounding this is when accurate correlations are noticed by those with otherwise inaccurate suppositions. In short it’s possible to be wrong and right. Just because someone believes the sky is pink, grass is green and rocks are hard does not make them wrong about the grass and the rocks, only the sky. If you are discriminating you can believe some things and not others. It doesn’t have to be all or nothing.

This really goes both ways. Illogic is an equal opportunity employer. And of course things always seem stronger when whatever you are espousing backs up what you want to believe. Sometimes enough to fudge things into to going your way.

One thing that’s annoyed me for years is the insistence that various things are untested. Often coupled with the addendum that the government (or some other entity), by releasing the untested item, is engaging in a conspiracy of some sort to test something on the unsuspecting public. They may indeed be releasing something on the unsuspecting public, but ‘finding out what happens’ is certainly not the goal. It’s often more along the lines, of ‘I hope nothing happens so I can keep my job and this money’. The thing about conspiracies is that generally what looks like a conspiracy is actually a series of incompetent mishaps, and if it is actually some kind of conspiracy (more likely to be a high flow of money from private interests/lobbyists with low public coverage) it’s nearly always profit driven.

One thing regarding this I run into a lot is that something isn’t tested on pregnant women. Well, no. What do these people expect, that some pregnant women are going to be rounded up and subjected to whatever treatment for the benefit of those in the developed world? Of course not! Studies of things on pregnant and breastfeeding women are most often done on an observational and situational basis. Write ups by doctors or other professionals of a group whose care providers decided the treatment, for them, outweighed the risks of the unknown. Observational studies don’t always lend themselves to statistical analysis, because they are just published accounts of professional observations. Sure, statistics will be applied to it to make it more interesting, and conclusions drawn on what it all means, but as we all know since it was observational it wasn’t designed, so naturally there are confounding factors. Well, I guess the problem is that we don’t all know that. And we, as well as policy makers, take these written observations as ultimate truth, when all they are is simply case studies.

The biggest problem with this is that most people are not scientifically minded. They aren’t ok with maybe being wrong. They get all emotionally invested in their beliefs. All you can really do is realize that things are not one-size-fits-all and make educated guesses based on your personal situation.

How to interview a lactation professional.

I’ve thought about this some, but then it came up in the comments for another post. A few of my posts reflect ideas I’ve had on this topic, so I’m going to expand on those as well as adding some new thoughts.

This should probably be broken into two groups: Prospective mothers (expecting), and/or those requiring generalist help and current mothers who have experienced a problem.

Let’s cover expectant mothers first.

If you are expecting your first baby, or your first baby you wish to breastfeed, you want to make sure you have an adequate amount of support. You should be focusing first on what resources are available to you.  This means checking with your hospital, your birth care provider, your pediatrician (if you are in the US for example), your local LLL chapter as well as seeing what private lactation professionals there are in your area. You should focus on how to access the services and what the cost will be to you. Having knowledge of where to find these resources is just as important as a birth plan, and for much the same reasons. The goal is to educate yourself to make informed choices. In addition, trying to find a lactation professional when you are desperate for help does not allow you to make informed choices. Try not to wait until you are desperate.

General questions to ask:

  • What are your qualifications? Here is a lovely guide I found on what all the titles mean.
  • How long in practice?
  • Is there any particular area you have additional expertise or interest in? (If you’ve got low supply and you are talking to a IBCLC specializing in oversupply she might not have the resources to give you the best help. If you are surveying what is available in your area then this is information worthy of noting down.)
  • What are your working hours? Do you work out of any hospitals or clinics?
  • What are your fees? What are your followup policies?
  • What breastfeeding challenges have you seen, treated, or overcome yourself?
  • Do many of your clients meet their breastfeeding goals?
  • If I experience a problem outside your area of expertise do you feel you have relevant resources to refer me elsewhere? What would you consider outside your area of expertise?
  • If I experience problems it will likely be a very emotionally turbulent time for me. Have you had experience supporting decision making and coming to a consensus about ways to resolve the problem (your provider should be willing to have a back and forth with you and if you decide that enough is enough support you in that as I refer to in this post).
  • What kinds of issues have been most difficult for you to help mothers and babies with and why? (as in, do they find the mother’s determination lacking, are surgical referrals difficult to get, etc. This is should act as a sounding board for their typical experience, if they have professional peeves as well as how understanding they may be to your situation)
  • How do you generally balance a mother’s well being with her initial desire to breastfeed? How do you manage situations that do not meet expectations and goals?

I also think that pursuant to this list, some of the general things you should ask a lactation professional if they have experience in are:

  • Do you have experience identifying lip and tongue ties, including posterior ties as well as other oral abnormalities like bubble palate? Are you confident identifying these types of abnormalities?
  • Do you have experience identifying a breast with  insufficient glandular tissue?
  • If you are a first time mother at risk for breastfeeding difficulties (PCOS, diabetes gestational or otherwise, history of thyroid disorders, lack of breast changes) you should certainly mention that. An appropriate response to my view would be a physical examination of the breasts as well as a wait and see with potential aggressive treatment if desired. Go the other way if you are told that any of those things will not matter.

Now for mothers who have previously experienced issues or are currently experiencing issues.

You’ll want any of the above that seem relevant as well as the following.

Specific questions:

Most of these are fairly situational so choose or adapt any that seem appropriate to you.

  • My issue last time was X. Will you help me explore solutions for that? How will you do that?

I’ve found some sounding board questions quite helpful to see how much recent research has been kept up with. You might ask if they know about the link between PCOS and breastfeeding issues, thyroid problems and breastfeeding difficulties, or even a more general tricksy question-what medical factors are you aware of that influence milk production in the mother and milk extraction or digestion in the baby?

  • What are your guidelines for supplementation in the infant.?

This is a personal preference one. The answers may range from over 7-10% weight loss, to watch the baby. I’d be wary if they say that supplementation is almost never necessary. If they say that I’d follow up with askance for some clarification i.e. in general or among your clients? What techniques do you use then for managing babies with milk extraction issues or mothers with milk production or ejection issues?

  • If supplementation becomes necessary which methods will you support me with? Are there any you will not support?

If you used donor milk last time and plan to should it become necessary again you’ll want a professional that supports you in that. If you used formula and prefer that, again, support. If you want to use bottles, you’ll want support in managing that, if you don’t you’ll want tips on other feeding methods.

  • As my issue was X last time can you give me some realistic expectations on what management of this issue will look like on a daily basis and what difficulties I am likely to face?

If they tell you you’ll need to pump 15 times a day as well as do some other things and this does not seem sustainable to you because of other children then bring that up. Discussion about an action plan is key.

  • Make sure to mention things you did or tried previously and whether or not you feel they worked as well as whether you’d be willing to do them again.

For instance, I tried domperidone and it inhibited my letdown reflex, and I am open to supplementing via SNS if it can be demonstrated to me that an oral abnormality is not the issue etc. You don’t need the frustration of reinventing the wheel and to avoid that the LC will need as much information as you can give her.

Warning signs:
  • Being told to wait and see or being told that every baby is different when you’ve experienced issues previously. Wait and see is a reasonable approach for some things but not if you want to be proactive. With some things it’s important to act quickly.
  • Your LC should never touch your breasts without permission.
provide support and encouragement to enable mothers
to successfully meet their breastfeeding goals

So if your goal is to breastfeed for 2 months then move to combination feeding for the next year she should be able to give you strategies on how to do that. She should also be supportive of your goals and willing to have an open and non-judgmental conversation with you. If your goal is to exclusively breastfeed with contraindicating issues she may (unpopularly) explain that that may not be possible, but give you long term management tips.

Note: there are a range of breastfeeding topics I do not have much experience with. Issues like oversupply, feeding multiples, flat or inverted nipples, breast size issues, prematurity in the infant, allergies in the infant, and reflux as well as others so I can’t give examples of more specific questions relating to those issues. However I can say that if any of your concerns are brushed off without explanation that is cause for alarm.
Overall you want to be having a conversation. Figuring out if this is the right person to help you if and when you need help.

Becoming a pariah: Breastfeeding’s underclass

I was a member, as previously mentioned, of a large parenting forum. I had a journal there which I started shortly after my baby was born. In that journal I documented our ups and downs with our breastfeeding issues. I’m considering how best to showcase those posts, often very raw and unhappy, on this blog. Anyhow, I titled my journal our journey with low supply as I thought that was our issue for 8-9 months. I keep digressing, but the main topic was about our struggle with low supply.

First off it made me hugely unpopular because the noisy breastfeeding advocates exclaimed that low supply was so rare and here someone was living with it, struggling with it, being public about those struggles and emotions, and apparently most aggravating, finding a way to keep breastfeeding despite it. Somehow being a successful combination feeder was a huge insult. I guess it’s easier if people fall into the breast feeder or formula feeder camps. It seems that once someone has fully gone over to not breastfeeding and they say that they did because of low supply it’s easier for those vocal people to tut and say that that wasn’t the issue. Far more difficult for them to do so to someone who has kept breastfeeding and has not managed to increase supply. Anyhow, as long as I didn’t argue the party line (all women can breastfeed; try harder!) too much I mostly got left alone; ignored even. But until I changed the title of my journal to something more general, at least three separate people came into my journal for the purpose of arguing with me about how I was wrong. I was told that if I’d been better educated, if I hadn’t doubted my abilities I would have seen that I was wrong about having low supply and I would have been a successful breast feeder. Now, at the time I tried to be nice and civil. After all they weren’t quite that blunt (ok, one person did tell me that if I’d believed I could breastfeed I would have been able to do it). People hardly talked to me in there as it was. I was trying to be sociable. But it got to me. I spent so much of that time plagued with extra doubt because of the things people were saying to me. By openly labeling myself a low supply mom, I publicly invited scorn from those breastfeeding advocates indoctrinated in the belief that 99% of women can breastfeed. One of the most hostile to me now has a blog herself (possibly one of the more hostile pro-breastfeeding blogs I’ve ever seen, not that I go looking) and is very much a ‘I did it why can’t you’ type.  I gave her latching advice and other support and she threw it in my face because after she ‘educated’ herself she decided my low supply wasn’t ‘real’.

I continued to offer advice and support to women who were also experiencing similar issues. During this time I noticed an upsetting trend. I am a member of other open breastfeeding support and information sites and networks and I saw it there as well. It was acceptable to treat women with breastfeeding issues as second class breast feeders. Talking about what problems looked like was ‘not ok’, ‘scaring women’ and the like. Those who had issues were dismissed as uneducated and failed by the system, those who succeeded were hailed with a ‘job well done’. This further glossed over what symptoms of breastfeeding issues look like. Who needs breastfeeding information and advice most? Those with issues, yet these areas are frequently dominated by passionate women with breastfeeding as their cause. Those who had issues, with pertinent advice to give, are most often relegated to the back seat while those who have overcome, or did it without too much fuss, become the first line of offense for those looking for help. The feelgood message is all very well and good, but it’s not appropriate for anyone with an issue beyond ignorance. So yes, know what a normal newborn feeding pattern is like, but also know when things are verging on abnormal and do not apply the protocols for ‘normal’ to that.

I know this is overflow from the dispelling breastfeeding myths movement. Dispelling myths is all well and good since our cultures need to relearn what normal breastfeeding looks like, but preventing knowledge of what problems look like to keep from ‘scaring’ someone hurts us all. No wonder when breastfeeding fails women feel so lost. They don’t know why or how things went wrong. There’s rarely any closure. On top of  not being able to access adequate help that is able to competently discuss the issues and come to a satisfactory resolution, you have these freaking mommy wars pushing that it was all about toughing it out. Advocates pushing that it’s all about the mother’s ability to stick with it and it becomes a spiral of what-if and if-only long after the fact.

I spent a long time feeling really bitter about how I couldn’t get any meaningful advice. Then I realized, those who had it to give had long since distanced themselves from those who only had platitudes because the self proclaimed bearers of breastfeeding wisdom feel continually justified and vindicated in what they are telling people (most of which is more or less true and nonetheless helpful and reassuring to those who are simply ignorant of what normal newborn behavior looks like), while those who have advice to give on problematic matters get shot down, belittled, accused of scaring or misleading women and other negative things. So they, though they may crave the providing of proper information and support, slowly withdraw because frankly it’s a demoralizing atmosphere. Like me. So now I’m part of the problem. At least I’m preserving my sanity.

Regret for information not had, and tears shed for the wrong reasons, are most bitter indeed.