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.

The hidden costs of daycare

I took my son out of daycare the week I had my daughter.  He had been in daycare for a little over a year and he had a great time there.  We paid a lot of money to have really great care, but no amount of money could really change some of the drawbacks to having him in that setting.  So for those of you contemplating using a day care facility for your little one once you go back to work, here’s my lessons learned.

First, the positives:

  • For kids with no close relatives (geographically, or in age) or siblings, day care helps them learn to share and live with others.  My son LOVES his sister and I think it’s because he was around lots of other little kids all the time.  He’s also great playing with other kids.
  • I could always rely on day care being available.  It was my responsibility to get him there, not to wait for someone to show up at my house.  And I could rely on them having plenty of supervision and qualified caretakers available.
  • My son learned things he wasn’t learning at home, like baby sign language, which has been a huge help.
  • For me, I got to hear advice from other moms and teachers, which was helpful as a first-time mom. They taught me about mum-mum cookies, showed me it was ok to fasten a diaper tightly, and reassured me about normal baby behavior. I am grateful to his early teacher for sharing their stories with me, supporting me, and showing him as much compassion as they did.
  • My son loves his sister and plays well with others. He was always a social baby and I think he did well in the day care classroom environment.
  • I didn’t have to think of clever activities to do – his teachers did that for me and he came home with projects and art work, and sometimes a card made of his hand and footprints that made me cry.

The negatives:

  • My son learned things he wasn’t learning at home, like throwing his food off his tray when he was done with it.  I know he picked that up from other kids at school.  It has taken a month to unlearn this habit – now he politely pushes his food away and says “Done,” or sometimes signs “done.”
  • My son was constantly sick.  While it took almost six months for him to develop his first ear infection at day care, he had three ear infections within a period of six weeks and was on antibiotics throughout the holiday season.  He had a runny nose… always.  We went through a box of tissues a week – and that’s just with mornings, evenings, and weekends!  He was never a fully healthy kid.  Everyone says it gives kids a greater immune system later for school, but…
  • I had to leave work to get him when he was really sick.  Because he was sick a lot, I had to use a lot of my own sick time to pick him up, rush him to the doctor, and stay home with him while he recuperated.  Some weeks I only worked one day and struggled to keep up with my job.  I might as well have been a stay at home mom those weeks!
  • In addition to the monthly fees, there were always fundraisers or other things happening that required additional money.  From candy sales to book sales to holiday candle sales, there was always another ask for cash.  Then twice a year there was staff appreciation collections done by the parent council.  Not to mention things we had to purchase for class parties (such as food, valentines, cards, books, etc.).  And whenever we switched classrooms or celebrated a major holiday, I bought something small for his teachers.  There was something every month.
  • It was downright expensive.  Really, really, expensive.

I wish someone had told me about how much my son would be sick.  I knew what I was getting in to with the tuition of managed day care, but I wasn’t counting on the stress of getting that phone call to pick him up.  I had one hour to pick him up from the time of the phone call; one time the poor guy was in quarantine because of a goopy eye which they believed was pink eye.  So I usually had less than an hour to find or call my boss and explain the situation, send emails to anyone with whom I had meetings later that afternoon to inform them I’d cancel and reschedule, leave notes or sign timesheets if needed, let people in the office know how to reach me, and call the pediatrician and get an appointment.  (Oh, and if you’re pumping at work, don’t forget your breastmilk).  I wish I was better prepared for it.

So there you have it.  If you’re considering going with the option I did, instead of a babysitter, nanny, or relative and you’re returning to work, here’s some things to ask about when you visit the facility.  And be prepared.

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.

My 100th post… It’s a girl!

I am proud to announce the birth of my dearest daughter, who proved once again a little uu can go a long way.

Born via c-section and weighing a whopping (for me) 8 lbs 1 oz, 19.5 inches (the exact same length as her brother), my daughter is a beautiful way to celebrate this blog’s 100th post, springtime, Easter, and to give hope to women TTC everywhere.

Her birth was scheduled since the kids are too close together to do a vbac safely (at least according to my doctor) and I scheduled it for the 39th week. No complications with the pregnancy; her growth was normal and on track, so I didn’t have any big restrictions. A great pregnancy for a great little girl!

I will never abandon you again, The Body Shop’s Aloe Soothing Day Cream

Dear The Body Shop,

Thank you for inventing your little pot of Aloe Soothing Day Cream.  I strayed from using it when I became skeptical of its powers, but immediately regretted my decision.  Once I switched back to using your Aloe Soothing Day Cream, any damage that had been done to my skin by trying a drugstore brand – including hideous dry patches around my nose and cheeks – healed in days.  Days.  Within one week they were completely gone and you would never know my skin had been peeling horrendously from a bad decision.

Just a little dab erases any dryness or irritation on my sensitive skin.  When the redness on my cheeks flares up, your cream calms it down.  My skin is never greasy or oily.  A little bit goes a long way.  It is so light and absorbs so quickly, that it’s hard to believe it actually works.  It has never interfered with any makeup I’ve worn after applying it.  I don’t smell like an old perfume after putting it on, either.

The Environmental Working Group’s Skin Deep cosmetic database scores The Body Shop Aloe Soothing Day Cream as a 1 on its level of toxicity and danger.  A 1.  As in, it’s basically water and aloe and you can’t get much more natural than that.  Making your product baby friendly, pregnancy friendly, TTC-friendly, fertility-friendly, earth-friendly.  Awesome.

Oh, and your products are made from fair trade farmers, which doesn’t exploit workers in third world countries.  Thanks for that, too.

Click for enlarged view

Your price, at $15, doesn’t break the bank and your stores typically have great deals so that it’s even less expensive.

If I ever cheat on you again, The Body Shop Aloe Soothing Day Cream, it will be because I will need a moisturizer with an SPF if my makeup doesn’t have any.  But fortunately, I see you have an Aloe Soothing Moisture Lotion SPF 15.  That’s very good news.

Thank you for this all around awesome product.  I will never need to search for a moisturizer again.

Sincerely,

Hope

“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?”