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I find my tongue tie resources out of date, though you can see my experience here.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

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.

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.

 

SNS tutorial

Just a video tutorial I made. I’ve been using this thing several times every day for over 6 months so I’ve had practice. It’s a bit alarming having my boobies on the internet (when I’m not even sure I like having my photo on the internet), but I’d like to help people, and if this does, so be it.

 

Let’s expand on what I’m doing. Sorry, these posts often get written during nap times or during breaks at work, so I may go back and add things in. I try to have them complete as I send them out, but sometimes I just want them posted, like this video.

With the gravity driven system of the SNS having the tube in the middle of the top lip helps to limit the flow. With non-gravity driven systems like the tube-in-a-bottle a la Jack Newman, or the LactAid, side insertion may be more appropriate.

Other tips and tricks:

You can clamp the tubing (just pinch between fingers like kinking a hose as I show briefly in the video) periodically to simulate space between let downs.

Latching is done per normal, just need to make sure the tube gets in there as well. I found it helpful to bring the nipple up from below the mouth, hook the tubing into the mouth then bring the nipple back down past the nose (to get a wide open mouth) and shove it all in. Here is an ok video of latching with the SNS, though I feel she has too much tube past her nipple.

If you are experiencing sore nipples, don’t try to mix taping up your breasts with Lansinoh or other breast ointment. You’ll lose your tape to the ointment.

Experiment with water or formula before using your breast milk. Just so you know how to stop leaks, put the device on etc.

I always cleaned mine out as soon as I was done using it and had it ready for next time.

Don’t be afraid to experiment with different tubing sizes (SNS) or different bag/bottle heights with any system.