The Micro Is Macro - or, When Tiny Things Are Devastating

September 4, 2012

Dear Family,

"There is only one thing people like that is good for them: a good night's sleep."
--E. W. Howe

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Jemmerisms:

“I broke my rubber band...an' now I can do so much cool stuff with it.”

“When you say, 'Do you want your hat, Jem?', you're REALLY saying, 'You should wear your hat.'”

“It's nice, looking at a baby and watching it seeing you and smiling.”

Discussing preferences with our neighbor, after listening to all the other kids describe the activities they did and didn't enjoy: “...I like _whatever_ happens.”

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Bennerisms:

It was an amazing evening at dinner. We had been discussing this really delicious sauerkraut that our neighbor gave us, and as I scraped the bottom of the jar, I said, Does anyone else want one last bite? Except, I hadn't realized that Ben hadn't had any yet at all. I'm so sorry!! I said. We'll get more soon!! I hadn't realized you didn't get some! Here, you can have the last bites!! Ben was hanging his head and crying, and Jeff and I thought he was upset that I'd finished the kraut.

But here's the amazing thing. Ben said, “...That's not why I'm upset!” He wouldn't tell us more for a while, but finally he said: “...I was sad because Mama was upset because she thought she could have the sauerkraut, and then she figured out that she didn't get to have any more.” Ben insisted that I eat the last bites of kraut.

Empathy! I explained later to Ben that even though the emotion had made him sad, it was actually a very good thing. He was feeling how it might feel to be in someone elses' shoes.

Some symptoms around here are really and truly healing.

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But the last eleven weeks of my life are making me ponder: What the hell is up with my karma?!

This is how I spent yesterday:

--Three and a quarter hours doing “suck training” with Eliza, using a syringe (filled with pumped breastmilk) and tubing;
--Four hours breastfeeding Eliza (with only minimal amounts of actual “feeding”); and
--Forty-five minutes bottle-feeding Eliza.

All this, to help her to ingest 11 ounces of milk! (In the middle of the night, Jeff fed her another four ounces by bottle).

This was in addition to the time it took me to pump nine times (including two sessions at night), in order to extract all Eliza's milk.

Aside from feeding Eliza, I had just about enough time to make our family dinner--and Jeff had just enough time to perform some money-making-work and do the dishes--before we fell into bed for some terribly interrupted sleep...in order to make it to this morning, to do it all over again today.

This brings me to the second thing I am pondering constantly: how the heck did we get HERE? From our beautiful home birth in June, and our GAPS diet that is helping me produce ample and fatty milk for our baby who was supposed to be perfectly and exclusively breastfed...to a new Dysfunctional Feeding Situation that is threatening to yet again subsume our family, this time in a haze of confusion, exhaustion, and conversations between my beleaguered husband and myself concerning Whether-or-not-Eliza's-sucking (it's even hard to laugh at the pun any more) and ounces-per-feed and sterilized bottles...

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I have no idea what's up with my karma. I don't totally understand why I seem to attract Drama around food. Maybe it's all an enormous coincidence.

I was hoping for a Happy Ending by the time I wrote this letter, but we're still in the throes of the craziness that began eleven weeks ago. Please be forewarned, in case you're not actually wanting to hear a litany of complaints at the present moment! Otherwise, read on to hear what's going on with our newly-bigger family...

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From day #1, I knew Eliza wasn't nursing well. Her latch _looked_ perfect on the outside, but she constantly slipped off my breast. And she couldn't handle my flow. And her little mouth caused surprising amounts of pain during every nursing session. And she never seemed to drain my breasts, which were constantly inflamed and lumpy. And then she started screaming, every night, sometimes for hours, sometimes even after nursing nine times on each side, to the point where _I_ wanted to scream and maybe even disappear to the land of Nice Big Sleeping.

This is how I normalized things: Ben and Jem also hurt me when they breastfed, for the whole seven years that I spent nursing them--so This Must be Normal. I got plugged ducts with both the boys--so This Must be Normal. Lots of people say breastfeeding hurts at the beginning--so This Must be Normal. My nipples weren't bleeding _yet_--so This Must be Normal. Eliza was nursing ALL the time, so she must be just Very Hungry 'cause she was so little--so This Must be Normal...right? Eliza's “colic” and “reflux” were making her cry at night--that's pretty Normal too...

And so, I concluded irrationally and with a great deal of humiliation, the problem must be ME. Once again, just like when Ben was tiny, I felt like I couldn't nurse my own baby. Once again, and this time despite incredibly ass-busting work over all these years of being a mama, I had an unhappy baby who screamed and screamed. And also--maybe I didn't make this part clear--for most of these first five weeks of Eliza's life, I was in crazy, agonizing, exhausting, unrelenting PAIN. It originated in my breasts each time she nursed, but then seemed to twist and writhe and radiate everywhere, continuing even during the few moments when she wasn't latched on. I couldn't really remember how it had felt, only a few weeks earlier, when my body didn't hurt all the time. So, just like mamas down through the ages, I thought: it must be All My Fault.

It's hard to figure out, now a month and a half later, how I could possibly have thought all this was normal. Just like I can't figure out why I ever thought it was normal for a three-year-old Ben to eat only three foods, and have three-hour anxiety attacks, and talk to other people only in the third person. I don't know whether I'm exclusively able to get so confused by such matters, or whether I'm surrounded by other humans who do likewise.

In any case, the pain was so bad that I was trying to stifle my screams almost every time Eliza latched on. And the shame got so bad that I didn't want to see anyone. I suddenly began to believe that my depressive tendencies were causing this. Surely anyone who could have a Nervous Breakthrough would also have the Faulty Hormones responsible for This...whatever it was! Nursing Eliza was probably also complicated by my not-yet-healed case of PTSD relating to Ben's challenges, was another of my increasingly hysterical theories, since this is triggered by social situations, his tics, food in general, cooking, serving meals, and eating...

Oh, the inside of my head was not a pretty place (nor was it very pretty to be in close proximity to me), at the beginning of the month of July.

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Could it have been that stabbing, shooting, sensationally horrible pains in my breasts were making me a wee bit depressed?? Along with the month of nights during which Jeff and I were woken up between 2-6 times, for 1-3 hours each time? Along with being exhausted from just having birthed a baby, compounded by trying to maintain the feeding of my family with food that is both super nourishing and also incredibly time-consuming to prepare, and also sometimes completely revolts me??? I think this is all very possible. But in mid-July, when Eliza was four weeks old, all I could see was that I was in terrible, awful pain and didn't even want to look at my adorable nursing baby. My mom and Jeff suggested that Eliza and I go to stay with Mom, to escape the heat wave for a few days, relax, and get the Strangeness under control. Sobbing with the exhaustion and confusion and desperation of it all, I went.

I was more ashamed than I've ever been, as I sprawled in a bean bag chair, disheveled and exhausted, trying for hours and hours on end to make the nursing work.

Except...during this (Eliza's fifth) week, which we spent nursing during her every waking moment (my mom did all the cooking and cleaning and shopping)...everything got worse. One night, I woke up to a screaming, hungry baby while from my engorged breasts emanated some of the most acute pain I had ever experienced. Somehow, I had to nurse my child. And yet even still, Eliza never seemed full. And her tailbone was funny. And she was SO tiny. And her tailbone stuck out. That nagged at me--why did it stick out??

In the end, I was pretty annoyed at myself for how long it took to figure out that Eliza was starving. I mean, it wasn't totally clear. Babies are supposed to lose weight at the beginning. And it often takes them two weeks to get back up to their birthweight, which is what happened with Eliza. And there's a spectrum of normal, concerning how much weight a baby will gain each week after that--usually 5-8 ounces per week. Many babies “scream for no reason” at night, so how was I supposed to know that my baby was screaming in hunger--especially since all I did was try to feed her??

But the fact remained, by the time we finally saw the lactation consultant, when Eliza was five weeks old and waking up sometimes every hour to nurse, that she was still only 7 lbs, 4 oz. And it was still kind of a shock, when this kind, knowledgable woman looked at me and said, “The problem is not you--it's your baby!” For a few lightbulb moments of relief (maybe it really wasn't my fault!!), I saw glimmers of what it could be like, if we had a healthy baby who nursed properly...

The problem appeared to be that Eliza had a posterior tongue tie, and a lip tie. Both of which can interfere with nursing, and in some cases can cause Severe Pain for mom. It turns out that these “midline defects” (a family of problems of which spinal bifida and cleft palate are members) are on the rise, and are strongly correlated with autism risk, and reflux, and potentially with a specific genetic “mutation” coupled with a rise in consumption of synthetic B vitamins http://www.lovingourguts.com/mthfr-part-1-2/ and http://mthfr.net/ . And for some reason, if you google “acute breastfeeding pain”, you come up with lots and lots of suggestions concerning baby's latch and positioning, and exactly no clear suggestions that there might be an actual structural defect with your baby's mouth.

A tied tongue might not seem like it could cause such problems with nursing, but try to suck on your hand while A. creating suction by using your tongue normally (i.e. covering your lower teeth/gums); or B. eliminating your tongue from the sucking action by pulling it back so that instead of creating a suction, your lower jaw simply clamps fairly uselessly (but forcefully!) against your hand. If a baby's tongue is tied, either fully (completely attached to the floor of the mouth) or partially (as in Eliza's case, when it's also called a “posterior” tongue tie because the tip of the tongue is free but the frenum is still tight or “tied” toward the back), her latch on Mom's breast can compress and bruise the nipple to a terrible degree even when it looks “perfect” on the outside.

It turns out that both Ben and Jem have tongue ties (and Ben has a pretty pronounced lip tie), but it is only now that people are starting to re-learn the significance of these when it comes to breastfeeding. Nobody noticed my babies' ties at birth, and back then I had no idea what to look for. Much knowledge concerning tongue-ties was lost back sometime prior to the '70s, when breastfeeding rates were at an all-time low and most moms wouldn't have to deal with torturous pain due to ties--only a baby who might suck poorly at the bottle, and who perhaps got the label “Failure to Thrive” without anyone connecting the issue to such an “insignificant” midline defect (let alone epigenetics or parental gut flora!). Some tongue-tied babies can nurse fairly well, or at least get enough milk to get by--which is what happened when Ben and Jem were breastfeeding. It hurt every time I nursed them, but at least they didn't nurse for long at each session. And they were reasonably efficient at getting the milk out.

But I was in so much pain by now with Eliza that I couldn't see straight, could only think: This Has to Stop.

Our visit with the lactation consultant was on Saturday, July 14th. On the 15th, Jeff was scheduled to take the boys away for two weeks for a vacation with his family, since once again we were hoping that if I had some peace and quiet in the house, I could somehow get this situation with Eliza under control without resorting to formula-feeding and the discontinuation of nursing.

Except that the course of action wasn't totally clear. The specialist doctor who “releases” maxillary and lingual frenums (ties) is in Albany, three hours away. I wanted to take Eliza to him first...but I was so, so incredibly exhausted. Our local pediatrician was honest in that he is much less experienced with the procedure, but since he felt reasonably confident that he could clip Eliza's tongue and lip (a quick, supposedly easy task that midwives have routinely performed for centuries), we opted to have it done in town. (Doing Nothing--waiting to see whether Eliza's growth might help her to nurse more effectively even with her ties intact--did not feel like an approach that I wanted to employ for even one hour longer).

The clipping literally takes ninety seconds, but I sat and cried in the doctor's waiting room, tears dripping down onto my poor, throbbing, lumpy, breasts. At least, I thought, I was in pain along with my baby!!

The next two weeks were a crazy merry-go-round of feeding and rehabilitation. The first time Eliza latched on after the surgery, I was insanely relieved to find that it DIDN'T hurt!! Amazing!! The first time I'd nursed a baby pain-free in all my nursing career!

But things went downhill quickly. My milk supply had dwindled over the past five weeks, since Eliza hadn't been draining my breasts properly. Since she was by now nearing the 0th percentile for weight, I solicited donor breastmilk and began feeding her round-the-clock bottles full of this supplementary milk in addition to our nursing sessions, which were rapidly becoming painful again. In between, many times per day, I was supposed to massage Eliza's tongue and lip incision sites to separate them, which made her scream and me cry. And now that my baby was finally getting enough food, she “woke up” to her hunger and began to sleep even less than she had been sleeping before.

While Jeff spent his days cooking non-stop meals for our hungry boys while on their “vacation”, I spent my days pumping and feeding our girl, surrounded by echoing peace and quiet, assisted by many really wonderful friends and neighbors who kept us company, fed Eliza bottles when she wouldn't take them from me, and checked in on us daily. Because in between the cracks in the craziness, there were all of the gorgeous parts of life that were so hard to take time to appreciate: We have a beautiful, adorable, happy (as long as she's fed) baby girl! She's 99% perfect except for her tongue! Her brothers are finally so healthy and growing healthier and enjoying their world!! It's just that, as Jeff said recently, it's like we're living in this stressful alternate reality from our kids, unable to barely catch our collective breath within our micro-crises-of the-moment.

What a strange summer this has turned out to be.

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Once I started using the breast pump, I was able to feed Eliza more of my milk, and I could begin tapering off the donor milk. But it wasn't until I built up my milk supply by pumping for 10-15 minutes every waking hour, every day for two weeks, that we were able to completely discontinue the donor milk and present Eliza with a non-stop feast of food from Me.

But here we were, Eliza was ten weeks old, I had an ample milk supply, and yet nursing had regressed to painful-as-ever. I was barely doing it at all anymore, and I was spending most every second either pumping my breasts, feeding Eliza with a bottle, or trying to do both at the same time. Her suck was so ineffective that even bottle-feeding took hours. The final thing to try was a visit to the specialist in Albany.

That whirlwind trip (Jeff's and my first overnight in 8 years!) was a week ago last Monday, when our poor baby had her same two frenulums “released” AGAIN, this time with lasers, this time with post-op instructions that we must actively stretch the incision sites three times per day, _in addition_ to massaging them. (Not only did this doctor cut further under her tongue than our pediatrician had, but the previous incisions had healed back together again--which was why nursing had started hurting again a few days after the first surgery.)

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Sometimes, life is so not fair. And I know exactly how true it is, that I'm probably luckier than 99% of all people who have ever lived, and I know how lucky I am to have a lovely family and a roof over my head and good food to eat. So many people would wish for my luck, for my adorable babies, for all of it. Believe me, don't I know it!

But gosh darn it, I want it ALL, and everything else, too.

In almost every way, Eliza is the baby I've been dreaming of since last fall, when I imagined the tiny little being we were inviting into our lives. She's 99% perfect, except for the tongue...

Here we are today: a week and a day after her second clipping (lasering??), she's having a harder time sucking than ever before, even with a bottle...and so we plod onward, trying to have hope and not just simply dream of when she'll be able to take solid food. The doctor in Albany almost made me cry, even with his brusque manner, when he said, “People don't understand the impact of nursing difficulties on the mother--AND the father! ...and whole families.” “Soon you'll have your lives back,” he said when we were leaving. And I dearly hope that he is right, that when Eliza's mouth looks less like ground meat, and doesn't hurt any more, that she'll be able to eat normally and sleep normally and we'll all be able to rest a tiny bit more...

The parts that make me so whiny are when I try to quantify my days, which lately are spent Nursing (which doesn't work yet), Breast-pumping (which is really annoying and time-consuming), Sleeping (which is always interrupted), Eating (delicacies like bone broth, raw liver, cod liver oil, raw placenta, patties made from dead cow, and as many vegetables as necessary in order to wash it all down), and (every few days) a half-hour of random free time during which I get to take a shower. And I know, Don't I absolutely and completely KNOW that I brought this upon myself during a beautiful shining moment back last October...that New Parents always have a lot on their plates...yadda yadda yadda.

But as I said, I would like it ALL, thank you very much. I want a cuddly and adorable new baby who is healthy, nurses well, and sleeps at night, and a body that doesn't feel completely exhausted and beaten by the rigors of sustaining said adorable baby.

I have spent so much freaking time doing all the things that one is Supposed to do in order to produce positive outcomes for my children/family, and it sometimes feels like even all this work is too little, too late. And I now know that it's possible to crack under the strain of trying to find my way out of Pure Suckitude, so my main strategy right now is to buckle down and breathe occasionally. I just have to breath out the sorrow, of wishing for even one baby with whom I could share a fabled and pure Nursing Relationship.

And thing of it is, I don't even get a salary!

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Ever wonder why on earth I became a mother? I sometimes do. I wonder if I wouldn't make a great employee somewhere, clocking in with my time sheet, performing measurable tasks in service of achievable goals, and joining the world of Gold Stars and Incentive Plans, Alfie Kohn be damned...

Another question really is: what will happen next in our tiny world, and in the larger one-which-I-mostly-ignore,-these-days?

I wonder.

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And how are you?

I really would love to know--letters help keep me going.

Love,
Sarabeth

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P.S. Even despite the craziness, life does go on. And over the past two months, there have been many notable events in our family: Ben learned to swim (really well, too), Jem learned to skip (like a professional), all three boys really enjoyed their time in Cape Cod with the family, we have had many and extremely helpful and wonderful visits from many very-much-appreciated family members, Ben's garden has flourished despite the drought, and we are currently enjoying popsicles and smoothies after two years spent not-eating fruit...

P.P.S. I don't actually want to damn Alfie Kohn.