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?

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.

“So, is this it?” and other awkward second-baby questions

The experiences of the infertilite in the fertilite world are often befuddling.  I have had such strange advice about having a second child, and even stranger questions, that I usually have to keep from cocking my head to the side and thinking out loud, “Is that really how normal people feel?”  Here is some of what I’ve had to contend with and, in some cases, explain in polite terms.

“I was a surprise, too, and I turned out okay.”  I didn’t hide the fact that I didn’t plan on getting pregnant so quickly after having my son.  But I didn’t plan on it because, as you know, I didn’t think I’d be able to beat the odds for a second time.  As in ever.  So yeah, surprise!  But how do you explain that to someone who doesn’t know the whole history or background, without getting into it and turning it into a weird and awkward conversation?  You don’t.  You just go with it and move on.

“You must have been in shock when you found out [that you were pregnant].”  A close friend asked me this about a month ago while we were having lunch.  And I admitted that yes, yes I was – for the reasons mentioned above.  “You have to remember,” I said to my friend, “I spent most of my maternity leave coming to terms with the fact that I’d have to be satisfied with one child.  That as much as I didn’t want my son to be alone and without siblings, the reality would be that he very likely would.  And that’s when I got pregnant.”  My friend’s eyes went wide as he threw down his sandwich and leaned back in his chair.  “Holy crap!” he said.  “I never even thought of that!”  Yeah, so that’s men for you.  He really didn’t have much to say after that.  I’m pretty sure he’s still processing that information.

“So, is this it?”  This from a nurse, her eyes darting between my 15-month old son and my ready-to-explode belly.  “God bless you,” she said, shaking her head and smiling, as if to say that she felt sorry for me and for the next two years of my life.  But I don’t know how to answer that question, “Is this it?”  I don’t even know how to answer that to my husband.  When one of the OBs in my practice asks me, “And are you having your tubes done, too?” and I say, “No,” even I have to wonder why that’s my answer.  And the best reasons I could think of are this: after years of struggle, heartache, rationalizing, hoping, hurting, and celebrating, it feels like the wrong answer to say “Yes, that’s it,” at this point.  It feels like a huge disrespect to my body, which has given me two incredible gifts after it seemed to have failed me for so long.  In theory, I really don’t want to be pregnant again.  In theory, there are lots of other ways to make sure that doesn’t happen that doesn’t involve further severing an already flawed organ.

Plus, it’s a little gauche to say, “Do I get a discount if I only have one tube tied?”

Happy New Year!

So I rang in the New Year sober, thanks to my little girl (yes, that’s right, it’s a girl!) whose growth in my UU has been ticking along right on target all these week.  And as my houseguests and DH indulged in glass of wine after glass of wine, or beer after beer, they looked at me with a half-pitying smile and said, “Poor Hope… another New Years sober.”  I don’t like being pitied because I’m pregnant.  I don’t like being pitied for any reason, in fact.

But the truth was, I couldn’t even remember if the 2011-2012 New Years celebration was a sober one for me, either.  Or if the one before that, 2010-2011, was.  They all started to blur together in my mind, especially as the reality of impending infertility began to rear its ugly head.  I think I might have let my guard down three years ago and had a drink or two.  And while many people find New Year’s an occasion to become the reveler you see in movies – doing shot after shot, playing music too loud, getting dressed up in the dead of winter and never wearing a coat – the sadness of my failure as a woman overrode the desire to get a buzz.  Like many other holidays – Christmas especially – it was a somber reminder of the potential memories I would never have: kids falling asleep waiting for the ball to drop, or kids waking me up in their little nightgowns and footie pajamas to tell me it was the new year, or just kids to be thankful for.

I didn’t wake up my son for the celebration of the new year.  I am too protective of his sleep patterns to allow that kind of disruption to take place, but also he’s really blissfully unaware of the meaning of days.  There will come a time he’ll want me to let him stay up.  Instead, I welcomed the new year with a new appreciation of the man my husband has become, to watch him as a father.  I marveled at the family that I thought I would never have – and at the new family member to join us this year – and wondered how I got to be so lucky after what I thought was a dead end.

Oops, I did it again

At my two-month checkup after giving birth earlier this year, my OB/GYN told me I could get pregnant again before I even got my period back.  I kind of rolled my eyes at her and said, “Are you serious?  Yeah, I don’t think that will be happening.”

“You’d be surprised,” she said.  I countered by reminding her it had taken me two years to finally get a pregnancy to stick.  “You never know,” she said.  I dismissed her advice.  Given the fact that I had beaten the odds with my son at every turn, as I’ve detailed throughout my early pregnancy, I really didn’t think I’d have the luck to beat the odds again.

I spent the first few months as a new mother panicking about the idea of raising an only child.  I worried that he would be spoiled, unable to socialize with others, not having any playmates growing up.  I worried that in old age he would be solely responsible for my husband and I, that he would have no one else to confide in.  I thought about my relationship with my sister, and my husband’s with his siblings, and I wanted those same bonds to exist for my son.  And I dismissed my feelings and resigned myself to being a great mom even if that meant only being a mom of one.

Well, here I am, 12 weeks pregnant, against all odds.  I am still holding my breath, as if none of it seems real.  And knowing what lies at the end of the road, I’m a little more nervous about another c-section.  Sometimes ignorance is bliss.  My OB/GYN group this time around is taking a wait-and-see approach to my care; “It’s possible you just make small babies,” one doctor said.  “That’s just how your body works.”  At this point I feel utterly clueless about how my body works.  Why now and not four years ago?  What about my body is so different?  It’s older now; I thought you were supposed to be more fertile when you’re young?

I’m already fielding questions, again somewhat unexpected, that seem somewhat insensitive to the infertilite journey.  “Well, I heard your body is more fertile after being pregnant,” said one nurse.  This doesn’t seem like a statement of fact to me; and she’s a nurse.  “Are you still considered high risk even though you’ve already been stretched out?” said another person.  And my answer: “Yes, I am,” because the uterus returns to its usual size after pregnancy, which for me is the shape of a deflated balloon.  A little deflated banana balloon.

Here we go again!  I will be tracking both responses to my pregnancy as well as observations going through this for a second time.  For me it is all about getting through one day at a time, and being thankful for the family I’ve been blessed with.  And my wish for you is to give you Hope, that though it seems preposterous, though it seems far-fetched, though it’s something you might roll your eyes at, it’ll happen for you and sometimes when you least expect it.

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.

Stretch remarks

You don’t truly understand what it’s like to have kids until you have them.  And you don’t truly understand the hard parts of (getting, staying) being pregnant until you are and have been.  And as much as my name is Hope, I try to keep my optimism realistic without too much pessimism, personally.  But recently I had an encounter with a coworker that made me question my own outlook until I realized she didn’t know what she was talking about.

We had been talking about big changes happening at work, and I had started the conversation by asking, “Do you have time?  I have to tell you something.”  Conspiratorial in nature, perhaps, but I didn’t have a serious demeanor – more like, “you-never-guess-what-just-happened” gossipy a-la TMZ. We had our little conversation and then went about our business.  Later, we walked out to the parking lot together and she said, “You know, when you first came in to talk to me I though you were going to tell me you were pregnant again.”

This coworker is in a committed relationship but not married, no kids, no house.  She knows about my UU and saw me leaving early two or three times a week for the testing I had to endure.  Sometimes I think she makes these kinds of comments because she wishes I wasn’t in the picture, that maybe I’m a threat.  Our friendship is sometimes more frenemy than friends; this is one of those moments.

I retorted, “I’m not ready, and I doubt that would happen anyway.  It was a miracle that it happened at all.  And I was so grateful for every day I stayed pregnant even into full-term.”  I thought that would shut her up.

“But everything’s stretched out now, so that’ll make things easier.”   Ugh.

“Doesn’t change the fact I have one tube and one defunct ovary.  And it’s still banana-shaped.”

“My aunt had one tube here (she pointed to her right) and one ovary here (she pointed to her left) and still had both my cousins.”

This example didn’t seem very useful to me.  I know this woman and I know her relationship with her family isn’t exactly all cookies and milk.  That she would know this much about her aunt’s anatomy was surprising, and I am willing to guess it’s all second-hand knowledge from her mother.  So a third-person story about a woman who had her children at least four decades ago didn’t seem that relevant to me, even if it was about a Mullerian anomaly.  She only said she had one tube and one ovary, and while it might have been likely she had a normal, pear-shaped uterus that part of the story was missing.  That’s kind of the critical part in my situation.

Without wanting to get into it, I tried to deflect the conversation with “Still…  I don’t think we’re going to have another.”  And then I changed the subject to weekend events.

I’m trying to understand why that conversation wasn’t very helpful to me, and I’ve settled on the fact that it’s because she doesn’t know what she’s talking about, but acting like she does, and not exactly being sensitive about it – as in, continuing the conversation without noticing that I didn’t want to talk about it.  When you’re infertile, the issue becomes highly charged and personal; when you’re fertile (or blissfully unaware of your fate, as I was) you take for granted that pregnancy can/should come easily, and you can banter possibilities about like laundry hung out to dry.  No big deal.  This should be easy female bonding talk, and it would be if everyone were in the same boat.  Infertility is like dirty laundry; something no one who doesn’t have it wants to talk about and something people who don’t know any better seem to think can be easily fixed.

File “Don’t worry – you’ve already had one kid, your uterus can stretch for the next” under “Irresponsible remarks to an infertilite.”