The Sjogren’s connection

One night, halfway through my daughter’s evening “cluster feeding” session, where she nurses for hours gathering all the calories she’ll need for several hours of sleep (NOT COMPLAINING that she sleeps 7, 8, sometimes 9 hours at night), my husband brought me a glass of water.  Dutifully, he had read that everytime you nurse you should drink a glass of water.  More water = more milk, as one of my nurses had said.  “Here you go, my dry wife.”

“Oh my God,” I said.  “That’s it!”  Eureka – maybe it’s the Sjogren’s!

As I type this, I have a dry mouth and I’m wondering where my water is.  It’s not because I’m breastfeeding.  It’s because I have an extremely mild case of Sjogren’s syndrome, diagnosed about four years ago by none other than an opthamologist.  I had been experiencing discomfort with my contact lenses, and it turns out I had developed cysts under my eyelids from dry eye and from not changing out my contacts enough, and wearing them too long during the day.  My doctor, concerned about a woman so young having dry eye like me, sent me to a specialist in autoimmune diseases.  The specialist listened to my case and a blood test confirmed his (and my doctor’s) suspicions: I had Sjogren’s syndrome.  It rarely shows up in women younger than 40, and as it was I seemed to have a mild, manageable case – even my bloodtest was borderline, my results being the lowest count of antibodies you can have and still be considered to have the disease.

In Sjogren’s, your body’s moisture producing glands don’t produce enough moisture.  Oh, don’t worry, I still sweat plenty.  But I’m always thirsty – rather, I need liquids to help me swallow my food.  I have had a ton of cavities though I take care of my teeth – because I don’t make enough saliva to kill the bacteria in my mouth.  I have dry skin and moisturize daily, even in the summer.  And I have dry eye.  It’s really not that bad, compared to people who have to take medication for their Sjogren’s.  I’m good with just a few changes to my routine. A year of Restasis, for instance, rid me of the cysts on my eyes and I’m vigilant about changing my contacts on time and not wearing them for 16 hours a day.

While there’s sparse studies linking Sjogrens to trouble with breastfeeding, there is anecdotal evidence on the internet. And it seems logical to me. Rather than reiterate what is out there, here is my favorite article by a Sjogrens formula-feeding mom:

Fearless Formula Feeder – Sjogrens

But if you need something more scientific, here’s a great response on a breastfeeding website:

Medical professional response about breastfeeding with Sjogren’s

When I had my eureka moment, my wonderful husband shared in my response. “That makes a lot of sense,” he said, and reiterated his support for making a bottle of formula whenever needed.

Love him.

Still, I said before that I had two theories about medical conditions preventing me from having a great milk supply, and the second reason is a little more graphic and personal. It is also pure speculation on my part – it’s never been confirmed by a doctor, but then again I never brought it up. How do you explain to your doctor that you think your breasts are shaped weird?

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The breastfeeding freakout, part 2: The odds are still against me

Let me start this post by saying that with better support from a caring lactation consultant, I have been able to breastfeed my daughter better than I was my son.  I’ve heard that milk comes in better the second time around.  I also advocated harder for support and knew a little bit more about it, having already done it.  Still, my daughter gets one, sometimes two, bottles of formula a day.  And trust me, it’s not for lack of trying.  I have come to the conclusion that the odds are still against me: my body is just not capable of producing enough milk for a baby.  After a year and a half of wondering, I have two new conclusions as to why that is.

Plenty of websites and medical professionals, lactation consultants included, love to tell you that if your baby fusses while breastfeeding, it’s not because you don’t have enough milk: “It’s just a growth spurt.  Hang in there!”  “Every woman can breastfeed successfully if she tries hard enough.”  “There are very few reasons why a woman couldn’t breastfeed successfully.”  Did you hear that last one?  There are reasons why you wouldn’t be able to breastfeed.  The ones usually stated have to do with the immediate health of the mother – surgery or illness, for instance.  It’s extremely difficult to find any information on true medical diagnoses that might lead to a woman not being able to breastfeed – a diagnosis that she might have known prior to pregnancy and might have been able to seek more support or at least prepare for supplementing, mentally, physically, and let’s face it, economically.  Formula ain’t cheap.

My daughter lost 12% of her baby weight while in the hospital before I began supplementing her with formula, the same as my son.  Her fussying and crying was exactly the same as his.  And the look of relief, “Ahhh!  Food!  Now that’s what I’m talking about!” was the same as my son’s once her father gave her the first bottle and first taste of formula.  It was an easier decision to make in the moment to supplement, having had to do it once before.  Still, all the doctors, nurses, and lactation consultants assured me that I could stop once my milk came in.

A few days later, I began to finally hear the puff-puff noise of my daughter swallowing while feeding.  What a satisfying sound.  Yes, I did it!  I thought.  I am woman after all!  Half-a-uterus be damned.  But by 7 or 8pm, the fussing continued or worsened, and I begrudgingly continued supplementing with a bottle.  She gained back the weight she needed to and passed her checkups with flying colors.  She was perfect, right on track.  No more, no less.  “You can stop with the formula now,” the pediatrician said.

Well, easier said than done.  In fact, there has only been one or two days in the last seven weeks that my daughter didn’t have formula, not including the first few in the hospital.  More than once I broke down in tears after hours of crying, fussying, and sucking: “Why can’t I be enough?  Why can’t I be enough for her?”  I asked myself if she was supposed to be happy between feedings, like the doctor said she would be, why is she still cranky, tired, or hungry?  She’s not colicky, because I can soothe her… with food.

I tried another “nursing vacation” where you do nothing but nurse for days.  And guess what?  As with my son, it didn’t work.

So I started wondering again, Surely this isn’t for lack of trying.  What might be the cause, something that no one talks about because they don’t want to give you an excuse for giving up on the very difficult work of breastfeeding?

The first clue dawned on me one night as my husband brought me yet another glass of water.

What made the second c-section birth better

I was really dreading having another c-section.  Mostly because the memory of the first one is fresh in my mind – how painful it was to sit up, much less walk for the first few days.  I remember feeling helpless in the hospital bed, unable to sit up enough to reach my son who was crying for a diaper change.  It was a terrible feeling – not just the pain, but the inability to move like I wanted to.  Afterward, I wasn’t looking forward to the restrictions – not being able to lift my son, or go up stairs too much, or even drive for a few weeks.  But without an option, I had to resign myself to the repeat surgery and its aftereffects.

I did have the option, though, in hospitals given that my doctors practice in three different area hospitals.  I chose (after discussion with the doctor who would be performing my surgery) the smaller, local community hospital that’s near my town.  With my son I went to a large city hospital with a full NICU unit, just in case there were any issues with my son and his size.  With my daughter, who was growing really well and above average on her weight, I felt less of a need to make sure I had a huge medical facility.  Neonatal care was available at that hospital if I needed it.  And now looking back, I enjoyed that hospital stay much more than I enjoyed the one at the larger hospital.  While I realize my experience is highly specific to these two hospitals, I thought I’d outline some of the distinctions that made my second visit a more pleasant one.

1. Convenience.  The community hospital is less than 10 minutes from my house, while the city hospital is 30 minutes on a good day.  With a little one at home, being so close was handy for my husband to run home and take a shower, and for my mother and sister who were helping to care for my son and who don’t know the area well.  For my 6am check-in appointment for surgery, it was nice to only leave 15 minutes early rather than more than half an hour.  And there was no charge for parking.

2. A smaller, quieter facility.  I was the only scheduled section the day I gave birth; and from what I could tell I was one of the only people in recovery for a while.  My recovery room was the furthest from the nurses’s station and entrance – the last one on the floor – so it was furthest from outside noise.  When there was a code red or blue in the hospital, it was difficult to hear from my room.  No one was wheeled past my door.  It was nice.

3. Nurses were friendlier… and they actually came when called.  In the large hospital it might have taken an hour for a nurse to come in when called.  In this case, if my nurse wasn’t available they sent someone else in – which was the case when I wanted to stand up for the first time.

4. Pain control was more of a priority.  Seriously, you should ask about this at any hospital you are considering.  In the bigger hospital, you had to call for your nurse to bring you pain medication – and as mentioned in the previous bullet, that could take an hour before they even showed up to see what you wanted.  This time around, the nurses and the lactation consultant stressed making my comfort a priority – if mom isn’t feeling good, she’s no use to anybody, especially the baby.  The nurses were always concerned about my pain level.  Yes, I did have to call for medications a few times, but they were prompt and sometimes scolded me for waiting so long to call (since I wanted to see if I did need them or not… and I really did).

5. I had more than 5 minutes with a lactation consultant.  Her office was two doors down from me, as a matter of fact.  She asked that I call for her at every feeding while she was on her shift.  She sat patiently with me, reassured me I was doing everything right, and told me how much further along with breastfeeding I was than people are usually.  She checked in before she left to teach a class.  I saw her a lot and I didn’t feel guilty about it one bit (unlike at the other hospital when I was told, “You know, people usually only see a lactation consultant once before they go” after I had seen her twice).

6. I felt listened to.  When I was concerned about my daughter’s weight loss, her constant crying, her constant nursing (to what felt like no avail to me), all of my nurses were patient and explained options to me.  When I described what happened with my son, they listened but reassured me each pregnancy is different.

7. Even the cafeteria workers took pride in their job, even if they realized the food they were delivering wasn’t so great.   They were very kind to me, always offering to make something off the menu if nothing sounded good.  (I never took them up on that offer).  One morning the woman had an extra food tray (like I said, I was at the end of the hall which usually meant I was the last to get food), and she gave it to my husband so he wouldn’t have to go to the cafeteria and pay $3 for yogurt.  Super nice.

8. Between my husband and I, we had a connection to at least two of the nurses who treated me throughout my stay – that we knew about.  One of my surgical nurses during the birth was connected to me through someone at work, and one of the head nurses requested to be my nurse because she knew my husband and his family from high school (she was the nurse there).  While sometimes people might find it annoying to know someone everywhere you go, I can tell you this much – I don’t mind knowing people at a hospital, since I think you’re bound to get better service because if you don’t, then everyone will know about it.

9. I had two anesthetists with me during surgery.  In the large medical center, I had a nurse anesthetist.  She was great, sure.  I flinched during the spinal – actually, I tensed up pretty bad, which you’re not supposed to do – and later I realized it was because I was ticklish on that side on my back.  So the second time, I warned everyone who would listen that I was ticklish, and to please warn me when things were happening with the spinal.  And the second time, I had two people working on numbing me – a nurse anesthetist and the actual anesthesiologist.  They were both phenomenal, but it also added two more people to help talk me through the process and keeping watch over my vitals and state of mind.  It helped they both had a sense of humor and put me at ease.  Whereas the nurse hadn’t warned me during the birth of my son that lightheadedness, nausea, and a sense of panic are all side effects of the anesthesia, the anesthesiologist was very forward in asking how I felt and told me to tell him the minute I felt anything different.  I told him once I started feeling lightheaded, and he put a hand on my forehead and said, “Yep, you’re getting a little sweaty, a little clammy.  Don’t worry, perfectly normal.  We’re going to give you a little something to make you feel better.”  That. Was. Awesome.  I couldn’t have asked for a better team.

I hope you will be able to ask some tough questions and take a critical look at your birthing center, wherever it may be, and think about what’s important to you.  Privacy, quiet, pain control, accessible nurses…  You may think you know what you want – if you’re like me you think you don’t want a lot of pain medication, but then you do – so just keep an open mind, and I wish you the best of luck.

The woman I’ve warned you about is me

I’ve had lots of curious recent discoveries into the world of infertilite mommyhood that I thought I would have been able to avoid, given my own story and situation.  But as I stared into the face of my sister-in-law as we walked through a children’s consignment sale during her 7th month of pregnancy, I realized that I had become my own worst nightmare.  I was the woman with the horror stories about giving birth.  I was the woman who thought it was better to give you the reality check than the comforting words you need to hear.  And I thought I was doing it all for the right reasons.

As it turns out, my advice is probably best suited for only other infertilites.  Although I was aware that my SIL had been told by her doctor she’d never be able to have kids, I didn’t know why and I never asked.  I knew she was devastated at the time, and as such, was (presumably) really psyched to actually be pregnant given her infertilite status.  She’s a very go-with-the-flow kind of free spirit, so I let her lead the way with questions for most of her pregnancy and I avoided mothering her too much.  I was proud of myself for having gotten this far, knowing that along her pregnancy she had some complications of her own – too much amniotic fluid, the baby grew very large, and she kept getting dehydrated.  So when it came time for some SIL-bonding at the sale, I took the opportunity to make sure she was more prepared than I was for the time of the birth.

This was an unfortunate mistake, however.  Because as it turns out, the advice that I have for someone who is pregnant isn’t really relevant for the majority of moms-to-be.  I had biweekly non-stress tests.  The doctors and midwives joked my baby would glow in the dark I had so many ultrasounds, because he didn’t grow to average size.  And I had a baby in the breech position with no chance of even squeezing out a natural birth.  Add in to the equation a few other factors, like the small size of my baby, my passing out hours after the c-section, my lack of labor pains (and them being back labor pains when I did have them all of two times), and my difficulty with breastfeeding, and you’ve got yourself a nightmare for a new mom-to-be.  Yikes!

So, yes, I told her all of these things…  mostly because she asked and was curious, and wanted to know what all of it was like.  But nearly every statement I said had to be qualified or dismissed with something like, “But that’s just because he was breech,” or “That’s just me, that’s not the normal experience.”  And with every piece of advice I could give, other than stocking up on sanitary pads, I became increasingly aware of how awful I must sound and how unhelpful it really was.  She really had no chance of having half the difficulties I did, so why bother scaring her with them?

Now that she’s had the baby, who was born a week after her due date, she’s remained just as relaxed about motherhood as you could imagine a free spirit being.  She’s had no troubles breastfeeding, her baby was a whopping 9 pounds, and she had to be induced.  After 24 hours of labor that went nowhere, the doctors gave her the option for a c-section and she took it.  Realizing how exhausting it had been for me to recover from that surgery – and mine was blissfully scheduled and relaxed, not preceded by a day of labor – my husband and I waited two full days before visiting in the hospital (unlike the rest of the family).  I don’t see a trace of shell-shock in her face, as I imagine mine was full of, and I keep my mouth shut about the aftermath of giving birth.  I nod as I listen because the first few weeks with a newborn are a universal period of unconditional love and personal sacrifice, and we all can relate to that.

In the meantime, I’ll be keeping my stories to myself until the day comes when someone who truly needs to know, for her own health, asks.  And, of course, to all of you – because you wouldn’t be reading my blog unless you hadn’t already wondered.

No formula for formula

The hospital pediatrician who told me my 2 day old baby had higher than normal, but not critical, bilirubin levels and was approaching jaundice, was also hesitant to recommend us formula feeding to help him along.  “No more than 1 or 2 ounces,” he said.  “But continue breastfeeding.  You don’t want him to think it’s too easy.”  Meaning it’s easier to suck on a bottle than it is a human nipple, so don’t let him get into the habit early.  But all along there had been no nurses encouraging me to breastfeed, no doctors monitoring us, just a daily check-up for the little one to find out of he’s thriving or not.  And he wasn’t, so of course I had to breastfeed more.  A nurse gave me lanolin lotion for my cracking nipples and I waited hours for a lactation consultant to tell me if I had milk.  She poked the top of my breast and said, “Oh yes, your milk is coming in.”  Then she discreetly rolled in a breast pump and walked away.

I’m telling you this story because as well prepared as I was for pregnancy and labor, I felt horribly underprepared for parenthood, especially what to do in the 72 hours or so following birth.  It doesn’t help that they pump you full of narcotics (the nurse had to get special permission to give me a half dose because I didn’t want the whole thing) to help you cope with the pain.  And there were so many decisions that had to be made I never really thought to prepare myself for.  Like how best to feed the baby.  I was going to breastfeed, right?  Sure.  That’s what they say to do.  “Breast is best” is the message on posters in every OB/GYN office.  If it’s so natural how hard could it be?  Surely I didn’t need a class for that.  Yet at the same time I had registered for bottles, because that’s what everybody does and eventually I knew I’d be returning to work, so the little one would have to get fed somehow, right?  Right. 

Turns out breastfeeding is hard – very hard, in a physically taxing kind of way, not in an intellectual way – and I should have taken that class.  The popular media, from magazines to websites, tout how healthy it is for you and for the baby.  You’ll burn extra calories and lose your pregnancy weight that much quicker.  You’ll pass along valuable immunity to your baby, reduce his chances of ear infections, allergies, and other illnesses.  You’ll bond with your baby that much sooner.  Breast is best. 

Tell that to someone who’s been a mom for 48 hours with a screaming infant lying skin-to-skin on her chest, red-faced and screaming, his mouth so dry from dehydration his lips are chapped, lips which in turn chap the mother’s skin on her breast, making breastfeeding a horrifying experience.  While you don’t have milk the first few days after labor, you do make something called colostrum, and your baby will extract about a teaspoonful of that stuff, because that’s all he needs and can digest.  I guess most babies are happy with a teaspoon.  I either didn’t have a teaspoon or my LO’s metabolism needed more than what I was giving him.  Which led to the whole formula supplementing thing.  Except I didn’t know anything about what to do with formula, either – I just had a shelf full of samples of different brands that had been arriving for the last few months.  I knew my labor coaches would have wanted me to throw those “artificial baby milk” products out.

Throughout the first month of my son’s life, every doctor seemed to have a different theory or approach to adding in formula.  The nurses at the peditrician didn’t judge, and sent me home with boxes full of samples.  One pediatrician asked that I nurse regularly before every feeding; another said to nurse exclusively and only give formula “if things get hairy.”  Which they did.  My OB asked if I was breastfeeding, and when I said I was supplementing she said, “That’s okay, it’s not for everyone.”  (Her acceptance/non judgmental attitude is one of the main reasons I chose her to deliver my son).  Does that mean breastfeeding is not for me? 

I looked for validation of my choices where everyone else does – on the internet.  Was it okay to be doing what I was doing?  Was I a failure, or had I given up too soon on breastfeeding?  Would my son suffer long-term ill-effects for it?  There are plenty of haters out there who say yes, I’m a failure; I’ve given up; I’m selfish for not breastfeeding.  And sure, there are people who say it’s okay to formula feed – of course, it seems like there’s always a medical condition that excuses that woman from breastfeeding.

Choosing formula versus breastfeeding, as with dealing with infertility, is something that women tend to beat ourselves up for, and judge each other harshly for.  We should be more supportive of each other, not tearing each other down.  And from my discussions with other moms, the number of women who choose to use formula with or instead of breastfeeding seems to be much much greater than the media would have me believe – so why doesn’t it feel that way?  Are they too embarrassed or ashamed to speak up?  Remember when women had to fight to be taken seriously in the workplace?  (Some would argue we still do).  Women who fought for you to get 6 weeks away from your job to recover and take care of an infant, without penalty to you?  Women who protested in order to make it a choice for you to be a stay at home mom, not the expectation?  What would they say to a petty bickering over how a woman chooses to feed her child?  As I read in one article helping to defend women who choose formula in any capacity over breastfeeding, there are worse ways to parent a child than to choose to keep him or her well-nourished with formula.

The infertilite and the breastfeeding freakout

If you have a c-section, you’re already at a little bit of a disadvantage for getting breastfeeding established as well as a vaginal pregnancy.  First, unless it’s an emergency section and you were already in labor, you very likely didn’t have the pitocin or oxytocin hormones running in your veins telling your body “Okay, it’s time to have this baby!”  Instead you got an IV in the OR, not only to help contract your uterus back to its tiny misshapen balloon shape, but also to cue your breasts to start getting ready to feed someone.  And as we all know, sometimes those kinds of medical interventions are not nearly as efficient at getting things started as mother nature is.

Second, you lose the ability to having the same immediate skin-to-skin contact with your baby as in a natural birth.  While you eventually get that chance in the recovery room an hour later, you’ve theoretically lost that first hour of baby “imprinting” on your boobs, which again would get your milk production started that much more quickly.

Third, you’ve got a lovely incision at just the spot where you’d either rest a baby while sitting or while lying to breastfeed, which means you’ve got to learn all kinds of alternate poses to hold your baby to breastfeed.  And you likely can’t move very much, at least in the first 24 hours, no matter how many meds they give you.

Fourth, if you have an epidural or spinal block, your baby is affected by those pain medications as well, making him super sleepy for the first 24 hours.  Great for catching up on your sleep; not so great for making sure he can latch properly.

Needless to say, by the time I had figured out that the baby had latched well and was trying to feed, I had two cracking nipples with blood blisters and a screaming baby who lost nearly a pound in two days and was beginning to get jaundiced.  By the time he was 48 hours old, he had started crying at the level of a scream and seemed inconsolable.  The crying only got worse whenever I tried to nurse him, and he would bob his head on my chest in frustration.  After a few hours of this, and having not gotten much sleep over the last two nights, my husband and I looked at each other exasperated.  Around midnight, we called in our nurse and asked her what we could do to calm and console our baby.  The nurse’s suggestion was a supplemental nursing system (SNS), which essentially attaches a small tube to your nipple and would introduce a small amount of formula to the baby while he nursed.  Reluctantly, we agreed.

One hour later, I was covered in formula and still had an inconsolable, starving baby on my hands.  We called the nurse in again.  This time she said she could bring a nipple for the formula and we could feed him an ounce.  My husband and I discussed this possibility, and I broke down.  Not only had I battled over a year of feeling incompetent and incomplete as a woman, but then I had spent every day of my pregnancy worried about its outcome and knowing the odds of preterm labor and other complications.  Now I could not feed my baby, a baby who, thanks to UU-related intrauterine growth restriction, did not have the same fat reserves on his body to burn while waiting for my milk to come in, as other 8+ pounders that are today’s average sized babies do.

It took a week for my milk to come in, and a month later every feeding starts with nursing but ends with a bottle.  After trying a “nursing vacation” (which is nothing like what it sounds), my supply still isn’t enough to satisfy the little squirmy one for five minutes, much less the two hours everyone else seems to get out of it.  I spent a lot of time wracked with guilt, too, thinking that this is something I should have taken more seriously, should have been more aware of, should have planned for better.  Was it something I did, or didn’t do, that nursing is not enough to feed my baby?  I will never know because we’re past that point.  The only thing I can do is bear the brunt of judgment, “Oh, you’re supplementing,” from doctors, friends, and strangers, never knowing if having a small uterus has anything to do with it, like creating an imbalance of hormones.  But blaming it all on the UU is taking the easy way out, because there is a part of me that wouldn’t do things differently.  A part of me likes being able to allow someone else to feed my baby and give me a break.  A part of me isn’t thrilled about attaching myself to a pump at work just so I don’t miss a feeding – and only getting 1 ounce of breastmilk out of a pumping session if I’m lucky.  Most days I’m okay with my choices, but every now and then I doubt myself and feel every bit a failure as a woman as I ever have. 

Then I look down at my nearly 8 pound full-term baby and think, “Yeah, I did that.”