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.

The great tongue tie caper


Or how I feel like I stumbled into a cult.

I mentioned my second child having a tongue tie previously. Well after the snip with the scissors I was still having pinchy latch feelings  as well as latch slipping and I knew the lip tie was still around. After wondering about long term management of my not entirely tongue tie related low supply problems on the MOBI message group I was prompted to revisit my research  into laser release.  I emailed them and asked if I could send along some pictures and see if they saw any problems.  They did. So in a whirlwind I made an appointment to see them, booked flights and planned a 12 hour day in Auckland with a 3.5 week old.

We flew up there, I found where the place was and I proceeded to hang out. This baby is incredibly laid back and sleepy, so armed with a baby carrier there was no problem.

Here is the lovely park we spent far too many hours at.

 

I’m glad it was a nice day.

Anyhow, the Laser procedure was fairly straightforward. The Doctor/dentist was nice, his staff was nice as well. The whole thing was very posh. Posh is a good word. It was really over the top for me. I felt a bit grubby in my jeans and sweatshirt next to the fleet of designer suited office assistants in an obviously expensive office block. The procedure was also quite expensive. But I rationalized it by thinking it’s about the same amount some people spend on a designer stroller or a smartphone, and this is more beneficial. Well at least I hope so. I still feel several weeks after the procedure that the whole thing is a bit faddish and people’s behaviour is a bit cultish as well. Oh, no doubt my child had a tongue tie and a lip tie. And no doubt many people who also have tongue and lip tied children have much more severe symptoms than we did. The ties didn’t hurt me that much, though they were a bit uncomfortable. I didn’t have anyone doing test weights so how much they helped milk transfer is debatable. It certainly didn’t fix everything. But I still feel vaguely taken advantage of.  Preyed upon even. Us poor women with breastfeeding problems doing everything we can to make it work. Not necessarily by that doctor, but in general. My midwife is a bit displeased I went ahead and did the laser. She thinks I’ve been taken in by a fad. And maybe I have been. We plan one more child and right now I can’t say definitively that I would do the laser again. Or if I’d have it done for my older child. I know for some people the result is unquestionable, but for us, not so much.

There’s a huge hole in terms of what most professionals will or can treat and it’s being filled somewhat by self diagnoses and things that are expensive with dubious benefit. And I’m finding the associated peer support a bit questionable as well with certain things that must be done and it’s sort of like if you aren’t doing the whole laundry list then you have only yourself to blame when things don’t work out. I’ve found myself at odds with others in this situation before. I do draw a line as to how far I am willing to go and for some that makes me less dedicated, but I also go further than many others do and for some that makes me a tad bit crazy.

Anyhow. Here are the before and after pictures of the tongue and lip ties.

Lip tie

Tongue before scissors

Tongue after scissors

A few days after lasering

Lip tie

Tongue

A week after lasering

 

 

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.

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.