Because my daughter could have died alone

This post is the one I don't want to spend the weekend writing.  I thought of funnier topics and cuter topics, but this is the post I need to write.  This post is part of Blogging for LGBTQ Families Day sponsored by Mombian, but today I'm not talking to my usual audience of friends, lesbian moms, feminists, and fellow travelers.  Instead my imagined audience for this post is someone like Kendra, who blogs at Catholic All Year.  I hope she won't mind a shout out (and just a note that this post contains no cursing, no explicit content, and a minimum of typos).  I thought of Kendra when I began this post because she is an intelligent and thoughtful blogger who engages with political and social issues, and also finds gay marriage in my words: morally, culturally, and theologically abhorrent, and in her words "immoral" and "sinful."

This is our story:  I married B in a civil ceremony at the courthouse in D.C., attended by our parents, and occurring two days after we found out our first attempt at IUI was unsuccessful.  A month later I was pregnant.  A few months into my pregnancy (2nd clinic IUI, anonymous donor from a bank), we made the obligatory trip to a family lawyer.  In most urban areas you can find a small cadre of lawyers specializing in gay families and you find them by asking around or googling.  I believe we paid $2,500 for a 2nd parent adoption and an additional $1000 for estate planning. In Maryland, our part of the process included a doctor's note, some essay questions, letters of support from friends and family, and pictures including a required picture of our front door.

While we were happy with ourselves for being diligent and starting the process early, the legal reality was that no guardianship or adoption paperwork could be filed before a living baby was born.  I could make my belief that this baby belonged to both B and me and that we would parent the baby together known through unofficial channels, but we could not formalize B's relationship to our baby until after the baby was born.

At the time, that didn't seem like a big deal.  Life continued, lots of sleeping, trips to IKEA, inhaling chicken and bulgogi beef, picking up extra work to earn extra money, procuring my great grandmother's rocking chair.  Throughout I was nervous but healthy, as was B.

Then, an ultrasound showed that baby's previously normal growth had slowed: monitoring.  And long after my nausea had subsided, I had some episodes of violent puking (in the bushes outside my classroom and in a plastic bag in the car and on the sidewalks of my neighborhood where only junkies puke).  Not great, but I knew that puking could be a normal 3rd tri thing.  Then were some headaches so bad that they made me cry, but my screenings and blood work were okay, so I went about my business.

We hit week 27 and I was headed out of town for one final conference.  I went in for my regular checkup: blood pressure pretty high, concerning level of protein in my urine - for the first time, blood work ordered.  The next day I was prepping for class and one of the midwives called to request my presence at L&D - immediately.  The blood work had shown significantly raised liver enzymes.  "But I have a class to teach.  I don't have a bag packed." I negotiated for two hours, hustled over to my classroom to put a sign on the door, burst into staff meeting crying, and called B. to come get me.

At the hospital we went immediately to the MFM practice.  I had previously met the doctor there when he brought some med students in to observe my impressive fibroids.  Extended and anxious scanning, discussion of IUGR, a steroid shot, and the doctor: "You have severe preeclampsia.  We need to prepare for you to have this baby in the next 48 hours," he said pulling a sad face.

On L&D we sat on a bench in the hall.  They brought a woman through as she screamed that she was losing her baby. Our midwife waved from behind the nurses' station, but didn't come out to greet us (still bitter).  My blood pressure was 160/100.

The night in the hospital was long and loud.  The nurse's default was to turn up the baby's monitors as loud as possible so that it sounded like I was in my own womb, women screamed endlessly, my blood pressure monitor alarmed every 15 minutes because my pressure was too high and no one came to turn off the alarm.  But I had B there with me, sleeping fitfully, together.

A second night B went home to stay with our freaked out dogs.  A nurse told me she wouldn't be able to come back until visiting hours started again the next morning.  "We're married, we have a certificate, she's my next of kin."  The nurse said we could get it sorted in the morning.  B remembers that the visitors desk swapped her "visitor" wristband for a "family" wristband that gave her access to L&D 24 hours a day without any hassle.

Despite the frustrations of the hospital, I started to simply exist.  The days blurred quietly together with tests and scans and quiet.  I read steadily through the collected Sherlock Holmes stories.

B and I couldn't discuss the what-ifs, we lay in my little hospital bed and tried to imagine our baby's future.  I had a half-waking dream about a little boy and a little girl on a beach, and I felt a wave of peace.  We had already chosen LB's first and middle names after her great-grandmothers, but I told B that if they baby was a girl and she lived, we should give her a second middle name, Grace, after the Our Lady of Grace statue in the hospital lobby.

Time felt soft, I was floating and waiting.  Baby stayed strong.  And then her heart rate was alarming.  And she went off the monitors and couldn't be found.  The head resident efficiently and calmly, too calmly, pulled the portable ultrasound into the room.  She was so calm that I didn't know when she found the heartbeat, and asked several minutes later "is she there?" I called B and asked her to leave work and come sit with me.

B talked to our lawyer, who said she would drive up to Baltimore after the baby was born with our paperwork.  "What if something happens to me during the birth?" I asked a nurse.  "You'll be okay," she said.  It wasn't a question I asked with fear for my own mortality, it was a technical question.  "What if something happens to me?  They'll put our baby in foster care," I said to B.  "We have a lawyer, if there's a problem your parents will come down and sign over custody, it will be okay." B understood, but we didn't have much of plan, and I couldn't dwell on the future.  When I did, I was forced to consider a future in which our baby did not live.

For the first nine days in the hospital, I felt okay.  On the 10th day, I did not.  I saw floaters before my eyes, that I did not report.  I felt off.  My MFM popped back in with the verdict: rising liver enzymes, stubbornly high BP despite major meds, baby not growing, and now dropping platelets.  "It's time, you'll have this baby tomorrow morning."

B stayed with me that night and we cried and imagined our baby.  Surgery prep started early, but we were already awake.  A nurse came in to start the magnesium sulfate, which I describe here.  Mag acts as a muscle relaxant, and after I stopped sweating and puking bile, I felt very calm.  B put on her gown and held my hand as I was wheeled to the OR.

The anesthesiologist was waiting for us, he asked me to sit on the table and put both my arms around B's shoulders.  "It will feel like bee stings" he said.  I was too relaxed to talk, but I thought, "I've totally got this!" having been stung several times by a wasp in my office with no ill-effects.  I lay on the table, relaxed and unable to see without my glasses.

I'm sure B was trying to crack some jokes, but I don't remember much until there was a flurry of movement and someone said "You have a daughter."  "Is she alive?" I asked.  "Yes, Yes" and a tiny pink bundle was flashed somewhere near my face.  I thought I heard a tiny mew.  "She's breathing on her own."  B ran back and forth between me and LB(G) managing to snap the first baby-in-a-plastic-bag (to conserve body heat) photos.

As the NICU nurses prepped LB, my team got louder and more energetic.  "Blood, I need blood!" became "WHERE'S THE DAMN BLOOD!"  Muttering, orders, cursing.  "Okay, we need to put you under, okay?  B, you'll need to step outside after she goes under." I tried to nod, thinking "yes, I don't really want to be awake for this." I breathed as deeply as I could, trying to make it go as fast as possible.

The next five hours or so are not my story, but what has been told to me.  Medically, my low platelet and fibroids combo had complicated delivery, and led to extensive bleeding requiring extensive surgery.  Thankfully the replacement blood did arrive in time.  Meanwhile, B was sent back to my room to wait with a friend who had just happened to come visit us.  She prayed the rosary with a Quaker, and sweated through a Code Blue not knowing that it wasn't me.  A nurse came in and sent her up to the NICU to see LB.  Born at 29weeks, weighing 2lbs 3oz, LB was holding her own.  B kangarooed her (I would share the lovely pics, but B isn't wearing a shirt), and took more pictures.

LB's first hour in the NICU

I came to around noon, looking and feeling rough.  It was hard to remember what had happened, but I did remember "you have a daughter," and I felt waves of joy and love.  A nurse, one of the ones who was both kind and efficient brought me a gingerale with a straw and it was the best thing I ever drank. B came bouncing into the room flashing pictures and telling me all about the NICU and about how she held LB.

In 1995, Julie and Hillary Goodridge had a daughter:

"When their daughter was born, she breathed in fluid and was sent to neonatal intensive care. Julie had a difficult caesarian and was in recovery for several hours. Even with a health care proxy, Hillary had difficulty gaining access to Julie and their newborn daughter at the hospital."[full text here]

As Julie lay in the OR, Hillary sought to see their daughter in the NICU.  She was turned away because  she had no legal relationship with the baby.  She waited until shift change and lied to a new nurse, saying she was her baby's aunt, and was allowed access. Hillary and Julie became the lead plaintiffs in the case Goodridge vs. Department of Public Health, the case that brought gay marriage to Massachusetts.

If not for Hillary and Julie, what would have happened to our LB?  Would she have laid alone in an isolette while B fought to get to her?  Would she have been denied that time sleeping against her mother's skin?  If things had gone worse, would she have died never being held by someone who loved her?

"We're married" were magic words for us, words that opened doors and produced wristbands.  These are the stories of unfortunate couples who possessed only lowly civil unions: Brittney Leon and Terri-Ann Simonelli, Janice Langbehn and Lisa Pond, Kathryn Wilderotter and Linda Cole, and Bill Flanigan and Robert Daniel.  This latter case is particularly sad, because Robert died alone after Bill was denied access to his hospital bed.  In each of these cases the couples were in a legal domestic partnership.

The sad fact is that "we're in a domestic partnership" is not a magic phrase.  Say domestic partnership and very few people know exactly what rights you possess. Say marriage and everyone knows you should be at your spouse's bedside.  In 2010, the federal government offered additional guidance to hospitals receiving some types of federal funds, telling hospitals that they must allow patients to designate their own visitors.  That's a step forward, however, at least one of the cases above occurred after 2010.  The workers at the hospital front desk don't necessarily follow changes in federal guidance, but they do know what marriage means.  Marriage means you get the bracelet.

I am not equipped to speak to matters of theology.  I have freely chosen not to know what, if anything, exists after this life.  I am living this life with love: the intense love I feel for my wife and daughter, the joy I feel for my friends and coworkers, for clerks and bus drivers and randos, the perplexity and fascination I feel for those who claim to love me, but would deny my daughter a mother's love.

as a big girl

Thanks to Mombian for hosting the 9th Annual Blogging for LGBTQ Families!

NICU Trauma: Five Days at Memorial Edition

Last week I read Five Days at Memorial: Life and Death in a Storm-Ravaged Hospital by Sheri Fink.  Just reading this book was harrowing.  About five pages in I started regretting my decision to read it, but I couldn't stop.  The book includes a really interesting discussion of medical ethics, and a depressing example of how quickly we lose our ability to understand and function within big systems during disasters.

And then there was the evacuation of the preemies.  They were among the first to go, while the hospital still had power.  Nevertheless the evacuation was chaotic and some of the incubators couldn't fit in the helicopter.  In one case, a doctor kangarooed an oxygen dependent baby for an entire ride in an open helicopter.  Terrifying.  That stayed with me, as did the forcible separation of family members from their very sick relatives.  I can understand why a hospital wouldn't want relatives clogging up the joint in the middle of a crisis, but given the way things played out it seems particularly cruel to deny both the sick and their families the comfort of each other.

I know that I would have wanted to be with LB no matter how dangerous the circumstances rather than be separated for days and weeks like some families were.  Devastating.

Pregnancy in the News

Not in our news, which is all of the boring "thinking about trying" and "paying money to store sperm until whenever" variety.

First, it's New York Times official, baby aspirin is a thing for preeclampsia.

The Navel Gazing Midwife is running a series of uterine rupture birth stories.  They aren't easy to read, but important.  This link is to the first post, which talks about the series itself.

Also, I'm reading a very long biography of the Brontes, and Charlotte just died of hypermesis gravidarum.  I had no idea.

And, one bit of older and not-exactly pregnancy news.  Again from "The Well," a statistically small but deadly risk from power uterine morcellation procedures for fibroids.  Basically, the surgery can grind up cancer cells and release them into the body.  Definitely worth discussing with your doctor before having a uterine morcellation, which is offered as a less invasive procedure than traditional fibroid surgeries.

Health Update

I wrote about some of the stuff LB is up to last week, but I forgot to mention the thing that has been the biggest positive for our quality of life.  (Knock wood) LB has been remarkably healthy this winter!  She's had a few little sickness, but nothing scary, no extra doctor visits, no middle of the night nebs, no holding a congested child upright all night.

Last winter LB had a mild bout of pneumonia (very scary for me), pink eye, months with a green runny noses, and various viral miseries.  And that was better than the previous winter that involved wheezing, low o2 sats, ear infections, sinuses infections, and a fever of 105.  The fever happened while I was teaching, B handled it really well, and by the time I got home LB was down to a respectable 102.  That was also the winter that LB's ped called on Christmas morning to check up on her because she was so sickly.  That was the winter that we tried desperately to force a small child to swallow an oral steroid that tasted like dirty pennies (yes, I tried it).

I'm so thankful for that first ped, a gentleman who had practiced for close to 40 years.  I feel like he single handedly  kept us out of the hospital that first winter by checking in with us twice a day when LB was really sick, and giving us very detailed information about the symptoms that translate into "go to the hospital now."  I like our current ped, but she's in the "if your concerned, go to the ER" camp, rather than "let's run through all the symptoms, do a neb, and I'll call back in an hour and check on you" camp. 

Both of those winters required a minimum of an hour of nebulizer treatments, often with a thrashing rabid badger of a child.  The helpful advice from everyone was "just let her watch tv," but at that point in life, LB had no interest in screens.  We got our best results doing the nebs when she was asleep, but I could never drag myself out of bed to do one before she woke up in the morning.  Both of those winters involved anxious listening to interpret the exact character of LB's crackling, wheezing, and gasping.

During those winters, LB always lost her appetite and lost weight.  After LB was born it took a number of months for her to be plottable even on the premature and low-birth weight baby chart.  She has always been small, but in the winter she would dip off the normal weight chart into some nether reaches of the 1st percentile.  I don't think being small is necessarily a problem, but I do have some random folk belief that a little fat reserve helps a kid have energy and immunity.  This winter, almost no sickness has meant no weight loss, and LB seems sturdier, more energetic, and happier (and less whiny).

This winter we switched from the neb to an inhaler with spacer, and it is amazing!  I really wish we had tried it last winter.  I've heard that the neb can be more effective at delivering meds to the lungs, but given the amount of neb time when LB was out of range, I think the inhaler is much more effective for her.  We do a maintenance dose of Pulmacort 2x a day, along with a nasal spray 1x a day, and we have albuterol for times when she sounds crackly, but we rarely need to use it.

A healthy LB also has the benefit of a healthy me.  I guess I had undiagnosed asthma as a kid.  There are a bunch of asthmatics in my dad's family and we all seem to get worse as we age.  Every virus I get seems to settle in my lungs and leave me coughing and wheezing long after everyone else has recovered.  And I never go to the doctor, much to B's chagrin.  Last winter, when LB got pneumonia, I was afraid I also had it, and spent a week extreme commuting while feeling like there was an elephant sitting on my chest.

She's done so well this winter, I guess the next question will be whether she need to continue using maintenance meds every winter.  Our doctors have told us that preemies often grow out of their lungs issues by age three, but that will be a scary step.

The Affordable Care Act and Me

This morning found me sweating and shaking on my front porch as I opened the envelope from MD Unemployment.  Thankfully the skinny envelope/thick envelope laws did not hold, and my skinny envelope held an APPROVAL!  Thank you safety net, thank you nanny state, please feel free to peek at my metadata as long as you keep those debit card payments coming.

The payments, less taxes, should be enough to keep LB in daycare*, and both me and LB in healthcare, perhaps with enough left over for a bag of groceries.  The health insurance is really the problem for us.  We can just about make it on B's salary, but add in $790/month for COBRA and the numbers stop making sense.  We Americans are a peculiar people.  Who would design a system where an adult making a salary could have very good insurance for one adult and one child for about $120/month, but an adult making $0 needs to pay $790/month for the same benefits?

As a middle aged asthmatic with an unmasked cardiac risk (thanks preeclampsia) and a 1/2 million dollar baby there aren't many good choices.  I've applied for our state subsidized insurance for both of us.  We'll only qualify if there's a "your marriage doesn't really exist" loophole.  I respect people who wouldn't take benefits only gotten through an anti-gay loophole (what was that they said in Women's Studies class about the master's tools and the master's house?), but my inherent cheapness would make me happy to stick it to the man by exploiting a loophole.  If that plan doesn't pan out, I'll be waiting anxiously for the final pieces of the ACA to kick in on October 1, 2013.

RI is definitely working on the state insurance exchange, but there isn't much specific information.  Information from the Governor's office is here.  In the few examples with actual dollar amounts, the subsidies are significant, but the actual cost is crazy high, making the cost with subsidy really pretty high.  Sigh.  I need a job...


* I used to wonder about people who were unemployed and still had their kids in daycare, but now it makes perfect sense.

Preeclampsia Awareness: Preeclampsia and Denial

May is National Preeclampsia Awareness Month, yay!  I've already done posts on my personal experience with preeclampsia, so this time, in honor of Preeclampsia Awareness, I thought I'd write about "Preeclampsia: The Disease Nobody Wants to Have."

The Preeclampsia Foundation describes the symptoms of preeclampsia as follows:

No Symptoms
Hypertension
Proteinuria
Edema (Swelling)
Sudden Weight Gain
Nausea or Vomiting
Abdominal (stomach area) and/or Shoulder Pain
Lower back pain
Headache
Changes in Vision
Hyperreflexia

Racing pulse, mental confusion, heightened sense of anxiety, shortness of breath or chest pain, sense of impending doom

Some women have no symptoms, and others have atypical symptoms like liver pain that presents in an unusual place.  Women like myself always have an impending sense of doom, so a sense of impending doom isn't really helpful as a diagnostic clue.  All of these symptoms are also experienced by some women who go on to have uneventful pregnancies.

The ordinariness, vagueness, and inconsistencies of preeclampsia symptoms present a lot of problems for pregnant women and health care providers.  When my blood pressure first started rising around week 24, my providers took notice, but they also suspected because it was so early in my pregnancy that I likely had PIH rather than preeclampsia.  They told me to take it easy, eat calcium-rich foods, and monitor my blood pressure at home.  They also ran a pre-e blood work panel, which came back fine.  In retrospect, I think I received good care, but I wish that they had had me come in for an office blood pressure check once a week.  It was too easy to explain away my high BP readings at home (I had the cuff too tight, I just walked up the stairs), and when at 27 weeks, I had an in-office reading of 160/100 I had absolutely no idea that I was doing so poorly.

• I don't want to be a baby about it.  Looking back, my biggest symptom of pre-e was exhaustion, but I kept going.  I'd taken on extra work to build up our savings.  I did multiple weekend of work travel.  I don't think being crazy-busy caused preeclampsia, but I wished I had listened to my body more and rested more.  In the big scheme of things, none of that work stuff really mattered, but at the time, but I didn't want to be a baby and say "I can't do that because I'm pregnant and exhausted."  Note to self: don't lean in.
• 
  
• I'm healthy (thin, fit, eat a great diet, eat tons of protein, etc., so I can't have preeclampsia).  Being overweight is a risk factor for preeclampsia.  Many women, particularly in natural birth circles, extrapolate this fact to mean that thin women who eat a natural foods diet can't get preeclampsia, or that preeclampsia can be cured by eating certain healthy foods.  I am a thin, healthy woman, who ate a high-protein natural foods diet before and during pregnancy, and I got preeclampsia.  Any pregnant women can get preeclampsia and all the hard boiled eggs in the world won't change that fact.
• 
  

• I don't want to have to change my birth plan.  I did not want to have a c/s.  I did not want to have a medical birth.  Although I planned to birth in a hospital with midwives, I was terrified of the hospital.  And then I got very sick, and much like my worklife, my plans for the birth didn't matter as much as staying alive.  I consider myself very lucky to have been a baby friendly hospital where staff was used to working with women who wanted natural births.  If you are sick and have to change your original plans, do look for the best options in your area for providers and hospitals that respect women.  Don't deny/downplay/ignore your symptoms in hopes that you can stick with your original plan.
• 
  

• I don't want to be pushed into a c/section or induction.  As a patient you have the right to know your options and to receive factual evidence about those options.  You should not feel bullied or railroaded (another reason it is important to have a provider and hospital you trust).  There are doctors out there who might jump the gun too soon for minor symptoms of pre-e.  They might do this for understandable reasons-maybe their last preeclamptic case was a bad one, or for self-interested reasons-the classic combo of convenience and defensive medicine.  As patients it's not our job to manage all the complexities of pre-e, so you really, really need a qualified, ethical, and decent provider who will act with your best intentions at heart.  I did not have the birth I had wanted, but I always felt that my providers were acting in my best interest, and that made me feel better about the experience.
• 
  

• My doctor says I'm find and I don't want to be a whiner.  This wasn't my experience, but a significant number of women report being ignored or having their symptoms downplayed.  This story is a harrowing example with a happy ending.
• 
  

• That blood pressure reading was just a fluke.  Yeah, I said that a lot.  My retrospective advice: keep a log of your BP readings, ask to have an in-office reading at least once a week, and call your provider any time that your reading is over 150/90 (or whatever numbers they give you for your threshold).  Also call in and report any of the symptoms on the big list at the top of this post.  When in doubt, get checked out.
• 
  
• I feel fine.  Even though I was exhausted in the days before I ended up on hospital bed rest, I basically felt fine.  In the hospital, I basically felt fine.  I had no swelling, no headaches, just some bad heartburn.  I really don't like to think about how things might have gone, if I had trusted the way I felt rather than my blood pressure readings and blood work.  It was really only in the day before I had LB that I started to feel bad, and even then it was a non-specific bad, likely due to my rapidly dropping platelets.

I wish no one needed this post, and I wish that there were more resources for women with preeclampsia or possible preeclampsia.  The fact that this little blog gets so many hits from people searching for preeclampsia info suggests to me that there is still a dearth of information.  I'm wishing all of you safe passage this May.

Gay Parents and Health Care Professionals

Recently the Huffington Post published this essay titled "The Question You Should Never Ask a Lesbian Mom." Of course it was about the infamous "who is the real mom" question. That question sucks, so does going to one of LB's appointments with B and having a nurse/PA/doctor only interact with one of us, while completely ignoring the other adult in the room. In the essay the author describes her son's surgery, and the multiple ways that health care providers denied her son's family structure.  I would feel better about the world if I never read the internet comments on news stories, but I can't help but look.  The comments on this essay were largely of the "Why don't you just relax and get over it, it's not like someone beat you with a crowbar because you're a lesbian."  And yes, I would rather have someone ask me "Are you her real mom?" than have someone beat me with a crowbar, but that imagined choice seems to miss the point.

I feel the petty insults of the world.  B and I spent time and money formalizing our relationship as mothers to our daughter, and it smarts to have someone waltz into an exam room and assume that I am my daughter's grandma or a random +1 who just happens to attend medical appointments with a child and her mother.  Those mistakes are small and easily corrected, but they point to the potential for higher stakes problems.  At a well-child appointment or a developmental appointment we can clarify or complain, but what about the night when we run through the emergency room doors?  What about the intake clerk who doesn't see our family as real?  For me, like many other gay parents, that fear turns to anger when I encounter life's slights and misunderstandings.

In my taxonomy of acceptance, the most accepting health care workers are those with long experience working in urban hospitals.  They save their ire for the high, addicted, hopeless, and, of course, teen moms, while stable, well-spoken lesbian moms are just another variation of normal.  The worst are med students, residents, and social work students.  I realize we all need to learn, but sitting with my daughter in the NICU or waiting for the results of her developmental evaluation are really not good times for me to be someone else's teachable moment.  It seems like there should be an orientation session, or at least a pamphlet called: "Shit you shouldn't say to racial/ethnic/religious/sexual minorities,"  but maybe that's the section when people duck out for a coffee. 

My very practical solution to this problem would be a little slip of paper: a little voluntary form, preferably in florescent color, that would say "Patient" and "Who else is attending this appointment" and "relationship to patient" that we could choose to fill out and would then be attached to some prominent place on LB's file.  If I had a dollar for every time I've though "Why did I just spend 15 minutes filling out paperwork, if you aren't even going to fucking look at it!" I would definitely have enough money to buy B a six-pack of her latest fav microbrew.  But I realize that people sometimes don't have time to look through a whole file as they walk in to see a patient, or the records may be unclear, or they may be dealing with parents who are closeted or partially closeted, or they may not want to come off as too nosy, or they may not want to assume that a sister/aunt/case worker is a lesbian lover.  Hospitals and doctor's offices need to come up with a simple way to let families define themselves and share what they feel comfortable sharing.  It would make life easier for gay parents [and as pointed out by a friend, gay parents can also be single parents, foster parents, kinship caregivers, etc.] and our kids, and it would make life less awkward for health care providers.

LB Update

The good news is that LB knows a new word: puke.  The bad news-she learned this new word after puking copiously in her crib.  She then seemed worried that the mamas were planning to put her back to bed in the puke crib, and closely examined the entire (clean) crib while saying "puke, puke, puke" until she was convinced that it was puke-free.  We are hoping that this is just her usual winter ick of mild respiratory symptoms and postnasal drip that lead to coughing and puking.  I don't like all the reports I've been reading of flu and RSV.  We're lucky that I'm currently in a month of semi-employment, so I can take care of LB without our usual stressed negotiations about who will stay home or made scramble to find care for a sick baby.

Despite being sick, LB has been hard at work today diapering dolls and stuffed animals, making them go night-night, and now giving them all nebulizer treatments.

Yesterday we had our first daycare conference about LB.  The scored her at only 15m for language development.  Eeeep!  According to her teacher, LB doesn't use two-word phrases at school, and wouldn't name object on command for the test.  That information made us less worried. LB does seem less developed in her language than any other toddler I read about on the internets, but she definitely uses a lot of two and even three or four word phrases at home, and she uses a lot of different words.  From our perspective her big issue is articulation, but I do wish she was talking more at school just for practice.  It might be time for another speech eval just to see where we're at.

Otherwise she is doing well at daycare.  She's happy and smiley and gets along with the other "friends."  I had noticed that one little boy at daycare always seems to want to be near her, and her teacher said that the other kids generally like LB and want to be near her.  Definitely good to hear, since at our interim daycare I would always peek in and see LB sitting alone at a little table.

Prematurity Awareness Month

November is.  Obviously I think prematurity awareness is an important public health/science/cultural issue, but it's also a strange one, because it encompasses several very different strands of experience.  From a public health perspective one of the biggest and most potentially solvable issues is preventable near-term prematurity.  This includes babies born at 36, 37, or 38 weeks by induction or c-section because a doctor or pregnant woman thinks it's time.  Maybe the woman is feeling terribly uncomfortable, perhaps the doctor is seeing small signs that the woman or her baby are developing problems, or perhaps the doctor or woman want the delivery to happen within a particular timeframe.

 Babies who come even a week or two early can have health issues related to prematurity, these issues cost money and cause personal stress.  LB's three month NICU stay cost around $500,000, as best I could tell from the very confusing insurance forms, and even a short NICU stay costs a lot.  So it's a issue, but not one that I find particularly relevant to LB's experience as a very early, very small preemie.    It does irritate me when the issues surrounding preventable near-term preemies and unpreventable early preemies are conflated.  A chipper "Keep those babies in Mommy!" makes me want to snap back with a "really, I should have waited until I was dead?"

How to Quarantine with Preemie (without losing your mind)

Happy RSV Season (not)!

It is the season of illness and ick, and if you have recently brought a preemie home, or you are expecting a preemie, you are probably dealing with a doctor-recommended quarantine.  Keeping preemies home and away from people helps them stay healthy by limiting the number of germs to which they are exposed.  It's a simple solution, and it works, but it can drive a person crazy.

We only had to quarantine LB for one season (she also got Synagis shots to boost her immune system). She was a 29 weeker born in November and we quarantined until May.  Places LB went during those months: doctor's office (waited in an exam room rather than waiting room), courthouse (for our 2nd parent adoption hearing), and outside for a short walk.  You will note that list is very short.  People who visited LB: a few older family members, very brief visits from our co-workers, some quick hellos with neighbors.  People we avoided most strenuously: children and sick people.

So, what to do with an infant and a few months of your life?  I won't claim that B and I were always happy and gracious about being cooped up in the house, but we did manage to keep ourselves fairly sane.  My suggestions

• Keep a loose schedule so that one day doesn't just slump into the next
• Get some exercise, even if it's just stretching in the living room or walking baby around the block
• Skype with friends and family
• Make sure you (both of you, if there is a both) get some downtime each day, even if it just a half hour
• Pretend you're having fun: do a puzzle, play a board game, watch a movie, anything outside of your usual routine
• Listen to good music
• Steal some time when baby is asleep, eat together, have desert, a glass of wine, or what have you
• Have a dance party!  
• Make a list of things others could do to help you (buy groceries, run errands, bring food), and when people ask what they can do to help, give them a few options from the lists 
• Ignore anyone who tries to tell you that quarantine is paranoid or over protective

It's stressful to not only have a tiny preemie and never sleep, but also to be trapped in the house and rarely see other people.  I didn't always have a good attitude, but I tried to remember to be positive, and if I was feeling down, to put on some good music, make a cup of tea, and realize it would pass.

Dispatches from A Handmaiden's Tale

Not that anything's really changed in the past week, but lots of news items have had me shaking my head.  Of course there was the "legitimate rape" comment.  The New York Times Lede blog reminds us that this particular pregnancy/rape myth has a long history.  Historian Estelle Freedman published an informative piece about the history of legal definitions of rape in the Washington Post.  That controversy led to the chilling reminder that in 31 states convicted rapists who father children have the right to custody and visitation with those children.  CNN covers the story here.  The blog RH Reality Check has some older, but good, analysis here.  The choice of Paul Ryan reminded some of us about that pesky "Personhood Amendment" issue.  These amendments seek to outlaw abortion for any reason (and perhaps limit fertility treatments, including pretty mainstream stuff like IVF).  Here's a peek at what life under the "Personhood Amendment" might look like.

In keeping with the politics of our time, the radio show On the Media did an interesting piece about what politicians mean when they invoke Ayn Rand.

In less dire, but still distressing, news-this case of a married lesbian couple denied medical decision making rights during serious pregnancy complications.  It appears that this denial violated state law, and as I have said before, laws only matter if the people in charge know them and believe in them.  As frustrating to me as the violation of the law is the fact that filing a medical Power of Attorney in Nevada only requires filling out a simple form, and then getting two witnesses or a notary to sign the document. In my (humble and non-legal) opinion, hospitals should be required to provide the appropriate POA paperwork to any patient who comes through the doors and states that a designated individual should be their medical decision-making surrogate.

In Maryland you can fill out an Advance Directive form found here.  You just need to have two witnesses sign the form.  You don't need a lawyer and it doesn't cost anything.  If you haven't done it already, do it now.

And also, register to vote, but I'm sure you've done that already.

ENT the Second

A few days ago we went back to the ENT, where we spent an hour waiting for a three minute exam.  Results: better, the infection in one ear has cleared and there is only a little fluid, and the other ear is completely clear.  She continues to say and understand new words.  LB will also be graduating from physical therapy at the end of the month.  She did very well at NICU follow-up, her language development is the only thing they are keeping an eye on.  And she also had an uneventful 18m appointment, so all good news for a girl.

She may not talk, but she sure can text

Telling Scary Stories (About Childbirth)

The Navel Gazing Midwife posted this article on her Facebook page about the horrors of scary birth stories.  The reasoning in the articles goes something like: women tell pregnant women scary stories about childbirth, these scary births are likely due to over-medicalized birth, and talking about these scary births encourages women to seek over-medicalized births and to be emotionally unprepared for a good birth, which lead to a scary birth, therefore, women should stop telling other women scary birth stories.  The author also give the example of unspecified other cultures where women don't hear scary birth stories and have unmedicated and uncomplicated births.  Certainly this may be true for "other cultures," but Anglo American culture has a long history of fearing birth.  Just think back to 11th grade English and Anne Bradstreet's (1612-1672) poem "Before the Birth of One of Her Children."

Now I generally think women should refrain from saying shitty things to each other.  Examples of shitty things you can say to a pregnant women include: "you'll be screaming for that epidural," "only self-centered hippies want a natural childbirth," "doctors are butchers and hospitals are filthy," and "only a maniac would give birth in a tub full of jello."  If you want to have a conversation with a pregnant lady, you might instead say: "that's interesting, how did you decide on that plan?"  Or you could say, "Have you seen any good movies lately?  That new Adam Sandler flick Jack and Jill looks pretty awesome."

I also understand why some women don't want to hear scary stories while pregnant, and in that case it seems perfectly appropriate to say "Can I stop you, because I'm already nervous and you are freaking me right out."  Even though I was super nervous during my pregnancy and very scared of having a c-section, I still liked medically interesting birth stories (maybe that's why I developed pre-eclampsia).  Some birth training programs like Hypnobabies really encourage women to avoid negative birth stories. 

And if you could choose between a lovely, peaceful homebirth and surgical birth with various lives at risk, wouldn't you choose the former?  This is a really great birth story.  My story (mine, B's, and LB's) is not lovely in any traditional way.  It involves early and severe pre-e, hospital bedrest, ultrasounds, IV ports, magnesium sulfate, a surgical team, blood loss, and LB's infamous first photos that we refer to as the baby in a bag pictures (for heat retention-and her head was not in the bag).  Our story may not be a "good" birth story in the traditional sense, but for me (with memories softened by mag and morphine) it is a beautiful story because it brought us LB, and because even though B and I were both terrified we were very strong.

So does it hurt other women if I tell my story?  Should I not be allowed to participate in motherhood's ritual of swapping stories?  On the preemie message board that I read there are often women who feel desperately guilty and ashamed to have had a preemie, and as well, to have "failed" at natural birth.  I respect the emotions of those women, however, I don't understand.  Getting sick with pre-eclampsia was no more my fault than getting any other disease (although maybe if I got the flu after licking a subway railing I would blame myself).  I so desperately wanted LB to stay on the inside, and if I had been able to control my body through sheer force of will surely she would have been full term.  I really resent the implication that women have high risk births because of bad thinking or because they are duped by "The Man." [And of course there are dupers, but it my case the medical team including OB, nurses, and midwives wanted exactly what B and I wanted-for me and LB to live.]  Certainly there are mind/body connections that we don't fully understand, but I think any reasonable person would agree that telling a woman who shared her experience with breast cancer that she was A) harshing your mellow, and had B) brought it on her own self by being such a stress case, and C) maybe should take these herbs I read about online because western medicine will kill you, would be a total asshole move.

I am a woman and a mother, and I have a beautiful story to share about the birth of my daughter.

(If you had a scary birth, how do you tell your story?)

Ladybug Ear Update

No stickers. Much screaming.  Exam results: fluid in one ear, low-grade infection in the other ear.  LB got some antibiotics.  Follow-up in three weeks.  Some talk of tubes, but Badger and I are pretty strongly opposed.

Ladybug Eye Update

LB's sticker says "I got my eyes checked!" Not to worry, no motivation killing empty superlatives there.

Mild astigmatism, may self-correct.  No need for action at this time.  Same time next year.

Note: do not google "eye speculum," instead, simply imagine that scene from A Clockwork Orange cast entirely with premature babies.  Now you know what eye exams are like in the NICU.  The eye exam for ROP (Retinopathy of Prematurity) was the worst thing I saw done to LB in the NICU (for other things they sent me out of the room).  And by saw, I mean I huddled in the opposite corner of the room trying not to look as LB screamed bloody murder.  This time last year, LB was cleared of ROP, so now they are just waiting to see if she develops generally crappy eyesight, either related to prematurity or genetics.

My big healthy girl rewarded me with 21 pounds of raging, thrashing, screaming love this morning before Badger took her to her eye appointment and then again on our walk home.  I'm trying to remember that feistiness will serve her well in life.

Speechifying

Ladybug had her speech evaluation.  At first the therapist said she was just below the 25% delay cutoff and would qualify for services, but she rechecked her numbers and LB came out slightly over the cutoff. At 18 months actual her skills are at a 14 month level, and she would need to be at a 13.5 month level to qualify. I had accepted the reality of doing speech therapy, so it was hard to adjust to the idea of not doing it, but I think we are okay with the way things turned out.  Given that LB's adjusted age is 15.5 months, and her hearing loss (reminder: make appointment with ENT), and the fact that her language has really been increasing in the past few weeks, I think it's fine to wait and see for a few months.  And I am glad that we don't have to try to jam another appointment into our weekly schedule.

We have NICU follow up clinic at the end of May, so we'll see what they have to say.  Hopefully LB will get to be advanced in something besides tantrums and cuteness.  She excels at those like they are her job.

Preeclampsia: You Might Get It, You Can't Cure It

It's Preeclampsia Awareness Month! Yay!  Before I got preeclampsia, I had no idea that there was such a month, and therein lies a serious problem with issue months-the only people who care are those who have already "been touched" by the disease.  But, in any case, this is my combination PSA and rant.

The Preeclampsia Foundation (a group of smart women with good information) tells us that the risk factors for preeclampsia are as follows:

Previous history of preeclampsia

Multiple gestation (i.e., pregnant with more than one baby)

History of chronic high blood pressure, diabetes, kidney disease or organ transplant

First pregnancy

Obesity, particularly with Body Mass Index (BMI) of 30 or greater. Calculate your BMI here.

Over 40 or under 18 years of age

Family history of preeclampsia (i.e., a mother, sister, grandmother or aunt had the disorder)

Polycystic ovarian syndrome

Lupus or other autoimmune disorders, including rheumatoid arthritis, sarcoidosis and multiple sclerosis

In-vitro fertilization

Sickle cell disease

Of these risk factors, I had exactly one: it was my first pregnancy.  I developed preeclampsia sometime between week 23 and 27, went into the hospital on bedrest at week 27, and then delivered at week 29 with a diagnosis of severe preeclampsia.

When I got the call to head to the hospital immediately, I was feeling fine-a little tired, but normal for the third trimester.  I had no headaches, no rib or shoulder pain, no swelling, and no visual disturbances.  My only symptoms were silent ones-blood pressure of 160/100 and elevated liver enzymes.

There are a variety of current theories about preeclampsia.  This article from the New Yorker "The Preeclampsia Puzzle" discusses some of the theories, as well as some of the problems involved in trying to conduct medical research about pregnant women.

What I took away from my experience with preeclampsia: 1) Generalized risk doesn't matter as much as  what actually happens to you.  In my case, knowing that I was statistically unlikely to develop preeclampsia made me less willing to acknowledge the seriousness of my rising blood pressure.  2) Keep a close eye on your blood pressure in pregnancy and don't be embarrassed to call your care provider if you feel off.  Many of the symptoms of preeclampsia are also normal pregnancy symptoms, but the good news is that the tests for preeclampsia (blood pressure checks, 24hr urine collection, and pre-e bloodwork) are relatively cheap, easy, and non-invasive.  When in doubt, get checked out!

And now the rant....

If you are a health food eating, healthy living, natural birthing type pregnant woman with signs of preeclampsia, you have probably come across online advice about nutritional therapy for preeclampsia. This advice comes in a few flavors, preeclampsia only happens to poor women who don't eat well (and we feel bad for them), you got preeclampsia because you ate white bread and fried chicken (and if you say you didn't you're a liar), and no one who follows the Brewer's diet will get preeclampsia.  Some natural birthers do disagree with these ideas, but dietary solutions to preeclampsia seem pretty widely accepted, particularly by those affiliated with the Bradley Method.

This advice is based on the research of Dr. Tom Brewer who experimented with nutritional therapy for malnourished pregnant women.  When his book came out in 1967 it was very poorly received.  But even the fact that the Brewer's diet is old hack research wouldn't necessarily lead me to dismiss it.  Sometimes you have the right solution at the wrong historical moment.  For example, the Ketogenic Diet was used to treat epilepsy in the 1920s, then it fell out of favor, and now it is back.  But those who promote the Ketogenic diet do not suggest that it can be used successfully for all people with epilepsy, and it is really the 100% cure absolutism of the Brewer's Diet folks that drives me crazy.  To me someone who says they have a 100% cure for preeclampsia is the same as someone who says they have a 100% cure for cancer-he or she is a person with some snake oil to sell you.

And really, if preeclampsia was all about nutrition, wouldn't having an eating disorder prior to or during pregnancy, or having hyperemesis be major risk factors for developing pre-e?

And below is a couple days of Mary's Diet to Promote Early and Severe Preeclampsia (from my pregnancy food diary).  Interestingly I ate a ton of calories, but gained very little weight.  I was also taking a prenatal, vitamin B, and fish oil with vitamin D.

Monday
B. hardboiled egg, 1 slice Ezekiel, 1 orange
S. hardboiled egg, almonds
L. hummus and cheese on Ezekiel, yogurt, carrots
S. steamed whole milk, almonds
D. meat and bean chili (homemade) on baked potato, sour cream, broccoli, melon, pint of whole milk, homemade ice cream
S. Cheerios with whole milk

Tuesday
B. oatmeal with whole milk
S. hardboiled egg, berries and melon
L. hummus and cheese on Ezekiel, orange, salad
S. hardboiled egg, cheese and wasabread
D. chicken, tomatoes, collard greens in homemade cream sauce on pasta, pint of whole milk, berries
S.Cheerios with whole milk

My other preeclampsia posts are here and here.

One inclusive form at a time

The Family Equality Council has a new program to encourage same sex parents to take photos of forms that refer to mother and father and send them in to FEC.  I wish FEC was thinking a little more broadly, since parent/parent doesn't seem that much more inclusive to me than mother/father.

In any case, this program encouraged me to send the email below, which I've been meaning to send for months.

Dear [Heath care provider name]

I would like to know if the [name] clinic would alter its paperwork to make it more inclusive of varied family structures.  Currently the paperwork ask for information about "mother" and "father."  As you know, these categories exclude our family.  The current forms do not reflect the legal realities of [our state] families, as two moms or two dads can now be listed on an [our state] birth certificate, as is the case for me and [Badger].  Perhaps more importantly, the forms do not reflect the social and cultural realities of many NICU follow up families.  Many, perhaps a majority, of [our city] families do not consist of mother/father/child, rather, children are being raised by stepparents, foster parents, guardians, and kin.  

Given these realities, it seems imprecise to limit a caregiver's relationship to a child to either mother or father.  I would suggest removing the mother and father designation, and instead asking for "name" and "relationship to child." Since the child's genetic history may be important to understanding some conditions, an additional box asking about the caregiver's biological relationship to the child could also be useful.

The Family Equality Council is currently involved in a campaign to address exclusionary forms.  I'm providing a link below that gives additional information.

http://www.familyequality.org/news__media/2012/03/12/1189/release_family_equality_council_announces_snap_it_send_it_campaign



Best,
Mary