Preemie Memories

November is Prematurity Awareness month, for what it's worth.  In my writing class, I did an exercise describing an object with sentimental meaning, and describe it for five days without looking back to see what I had written previously:

It fits in the palm of her hand.  A perfect impression, the plaster only crumbling along one edge.  How could feet that small belong to a person?  The tiny lines and creases preserved.  The plaster is grey, but the memory is pink feet.  Tiny human pink feet already scarred with needle holes.  Pink feet against a background of florescent lights, machines beeping, digital numbers rising and falling on monitors. the footprints sit in plaster, in a box, in tissue paper.

Wrapped in pink tissue paper in a closet on a shelf in a crate in another box, in another box.  “It must be in here.” Something so important must be here where it should be.  She digs past the vacuum cleaner with the canister that crashes off, past the wrapping paper, past the weights.  It’s not in the torn cardboard box, not in the shopping bag, but in the orange crate.  She digs, unpacks, and lifts.  Uncovered.  A tiny plaster cast of two feet. Perfect feet with lines and creases.  Like human feet, in tissue, in a box, in a box, in plaster

The footprints fit in her hand.  Gray plaster in the shape of a scallop shell, the impression of the feet creased and veined.  She imagines what she did not see.  The nurse, name forgotten, releases the side panel on the isolette.  She strokes the baby's head and moves the wires to the side.  Her gloved hands lift the baby's feet.  Deftly into the plaster and back out.  Did the nurse sing or coo? Did she rock a startled baby?  The footprints don’t remember.

Tiny footprints preserved in plaster—gray toes and lines and creases like real feet.  The real feet attached to the baby were pink and in motion, scarred by needles, taped down, glowing with a pulse ox, kicking and pushing.  The plaster feet stay still and silent.

Footprints in a scallop shell.  Tiny feet preserved in gray, toes and lines and creases, perfect and silent.  “Mama, mama, mama” four years later she doesn’t sleep at bedtime.  Dirty feet in purple butterfly flipflops as the leaves fall.  Chipped nail polish feet in motion kicking and crunching leaves.  Dirty feet thump and run overhead long past bedtime. Plaster feet stay wrapped in tissue paper in a box in a box in a closet.

Real Life With a W-Sitter

Advice on the internet: it's always worth the money.  Just because I need to periodically revisit issues I've decided not to worry about, I recently read the post about the evils of W-sitting here.

If you're not familiar with the W-sit (be thankful) here's a picture of LB in a half-W, with leg and foot pointed back and away from her body:

For LB, and many other kids, W-sitting is a symptom of low tone and low core strength.  Where kids with typical tone use their core muscles to stabilize themselves while sitting, kids like LB compensate for core weakness by making themselves as wide as possible while sitting.  In our journey through the world of PT, we've encountered a couple schools of thought related to W-sitting.

One, like the author of the linked article, says that as kids W-sit they further weaken their core, and that W-sitting is a bad habit that should be corrected until kids no longer do it-and strengthen their cores so by sitting properly.

An alternate view expressed by two of our PTs is that the benefits of reinforcing correct posture are outweighed by the developmental harm of constantly correcting a child who is trying to concentrate and learn through play.    Between ages 1 and 2, LB W-sat a lot and it was clearly her most comfortable sitting position.  Her PT encouraged us to allow her to continue her activity while quietly pulling one of her legs straight so she was in a half-W.  She also told us that she didn't consider it necessary to constantly correct a busy bee like LB, who was often in motion and shifting positions.  So a kid who W-sits for short periods interspersed with other positions may not need the same level of intervention as a kid who is sitting in a W for a half hour while working on a  project.

At LB's most recent PT evaluation, the therapist was even more emphatic that W-sitting is the symptom, not the problem.  He recommended as much walking, running, jumping, swimming, etc. as LB can manage in order to strengthen her core.  Encouraging LB to be active can be hard, sometimes she will absolutely refuse to walk, sometimes she wants to go to the park but only wants to go on the swings.  And modeling physical activity and engaging her in games really helps, but B and I are also human beings who don't always want to play chase with a young child, so sometimes challenging LB to get stronger means challenging ourselves.

According to that PT, the goal is overall strength, and if you build strength W-sitting will decrease without a lot of intervention.  I like that a lot more than viewing W-sitting as a "bad habit."  Doing what feels comfortable for your body because your body is atypical is not a bad habit nor is it lazy (I also don't like the "droopy snowman" thing).

If we we're to get to a place where we felt LB needed more intervention with her sitting, I would much rather present it as a positive, "sitting this way helps your body get stronger," and get her some low blocks to sit on than present W-sitting as a character flaw.

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!

You've Come a Long Way Baby: Part 2

A year and some ago, LB was not quite walking, and then she was not quite talking.  I was hanging out in the space between mom of typical kid and mom of atypical kid.  A year later, LB is a walking talking machine.  Tonight she balanced on an upside down chair while saying (at our prompting of course) "Honey Badger don't care." We've come a long way, but LB is still on the edge of typical.  After a few weeks, LB's speech therapist ruled out receptive or expressive language disorders, and decided that LB is capable of speaking at a normal volume when she wants to.  After observing LB at daycare, she raised the idea of sensory issues.  Apparently at school, LB is sometimes happy to ignore the activity and do her own thing and she speaks very little compared to what we hear at home (no Honey Badger monologues for school).  Wait and see, wait and see.  Then there was the physical therapist evaluation.  LB can run, and she can walk up and down stairs, which is all good.  But we've noticed that she has a crazy little egg beater motion when she runs.  And it makes her so happy to swing her little legs as far away from her hips as she possibly can as she runs.  According to the PT, we are correct, and this issue has a name, genu valgum or knock knees.  Othro consult to follow (for freaking knock knees!).  At this point, it's not good or bad, it just is.

Even, Even More Reviews of Books About Preemies

And now for something more substantive.

I think I've hit the wall with my reading of books about preemies and their parents.  Probably that's a good stage in my emotional health.  For this installment I read This Lovely Life: A Memoir of Premature Motherhood by Vicki Forman, and Jenny Minton's The Early Birds: A Mother's Story for Our Times.  Forman is a professional writer and Minton worked in publishing and both books are nicely written and seem to reflect a good deal of care and editorial attention.

In This Lovely Life Forman has the more unusual and compelling story to tell, which is also to say the more tragic and complicated story.  She went into labor with her twins at 23weeks, and despite the wish of Forman and her husband that no extraordinary measure be taken to revive and support the babies, the hospital insisted on aggressive medical intervention.  Twin Ellie lived a few days, and twin Evan survived with significant disabilities.  He died at age four of complications related to one of his early surgeries.

Forman presents her story of mothering children who she wanted to let go in all its pain and confusion. I felt so much empathy and sadness for the Forman as they sought to do what they thought best for their children, and were blocked by an obfuscating institutional entity.  But, I also felt anger-both at Forman's father who comes off as a complete asshole, telling his daughter, among other things that "these children should never have been born."  It was also hard to take Forma sometimes, with her expectation that things like this don't happen to people like us (successful, wealthy, educated people) and at her surprise at her love for her disabled son.  This book was a good one to read so soon after I had finished Andrew Solomon's Far From the Tree, because Solomon gave me greater context for the feelings Forman expresses.

[I find that as the mother of an early, small baby who believes strongly in reproductive choice, I am often in a confusing ethical and emotional place.  I believe that the Formans should have had more say in the medical decisions for their babies.  I don't think it is wrong to withhold heroic medical measures for a very early, very sick baby, but neither do I think it wrong for a parent to ask for all measures, and it isn't wrong to want your baby to live, even if the child is likely to have serious lifelong disabilities.  Those choices, it seems to me, must be made from the heart.  The parents need to do what love tells them to do.  I'm much less sympathetic to the sort of casual eugenicism that assumes lives live with disability aren't worth living.]

Nevertheless, I really appreciated the work that Forman put into honestly representing her thoughts and feelings.  Evan died only a year before this book was published, and I'd be really interested to read what Forman would write in another ten or twenty years.  In this book, Forman's experience is raw and honest, but also jumbled and chaotic, I think a longer look back would allow her to shape her experience into a stronger narrative, although maybe it would be less honest.

Minton's story in The Early Birds is more ordinary: twins born at 31weeks, one of whom had a scary bout with NEC.  The book jacket states that "for 64 days [the boys] hovered, critically ill, in the neonatal intensive care unit,"  a description that seems overwrought and inaccurate.  In contrast, Minton captures the minutia of the NICU with a close eye.  The book is a straightforward narrative that takes the reader through pregnancy, birth, NICU and post-NICU babyhood.

Minton's larger point is a cautionary tale about fertility clinics and multiple births.  As she went through the process of getting pregnant and carrying twins, Minton was not warned of her risks of delivering early, and of the problems that early babies can face.  Potential parents should be more aware of the problems presented by a largely unregulated fertility industry and by preterm birth.  These are all good points, but to make a compelling case, Minton would really need to expand these parts of the book and provide more background information and analysis.

I'm not sorry I read these books, but overall I would recommend Alexa Stevenson's Half Baked as a more engaging preemie memoir, and Geoffrey Miller's Extreme Prematurity for a discussion of ethical issues related to premature infants.

Bonnets I Have Known

If you read my previous post, you might think that LB only wears overalls and Mao suits, but I do have a weakness for baby hats and bonnets.  Now LB is reluctant to wear even weather appropriate headgear, but I still have my pictures.  For your enjoyment

Language Explosion

How I hated that phrase, and then, at some point in the last few months it happened.  At LB's developmental appointment in late September (22m), she had fewer than twenty words that she spoke without prompting.  Now she must know hundreds.  She asks for her books by name, and her toys, and her DVDs.  She knows the names of all the foods she eats regularly and all the people in her life.  Last night, I was reading to LB and I had to pull apart some sticky pages.  LB grabbed the page and said "Rip! Book rip.  Harry rip." She managed to tattle on two of her school friends using words. She told us that our dog is cute. Amazing!

Back when it seemed like LB would never walk, I worried.  I worried that she wouldn't walk, or talk, or put stupid pegs in a pegboard, and I also worried that her childhood would enfold like a scene from Dicken's Hard Times or Walden Two, as every moment of our living became an opportunity for training.  I do want LB to learn, but I also want her to relax, to be silly, to do her own thing, to eat candies and watch Elmo, to have a life of little joys.  The worst of our developmental doctors pushed something very different, a life of pegboard practice and gross motor exercises divided into half-hour and hour increments.  At our last developmental appointment, the evaluator may have actually clucked her tongue at me, as she explained that LB's stair climbing performance was "weird" and would require close monitoring in the future.  At the time, LB was able to walk up and down stairs with some effort and a spotter.  The stairs at the clinic were a moveable unit that looked like a piece of playground equipment, and LB responded accordingly.  She climbed, but she also crawled and slid, and generally acted like a playful Bug.  For the evaluator, there was no place on the sheet for a child's organic understanding of an unfamiliar structure.

I'm sure my frustrations with boxes to be checked on sheets will come back in full force once LB is in school, but for now I feel like we are in a good place.  As LB learns more and can do more, it's easier for me to feel confident that she can and does learn organically.  It's also easier to casually play little games that will build skills, but are still fun for her.  It's easier now that we can read books and LB understands them and interacts with them.

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.

NICU PTSD

Our Sandy experience was uneventful in the extreme.  I'm thinking of those who are still in the middle of it.  Life without power gets old after the first 24, and I can't even speak to the stress of worrying over loved ones or losing a home.  I think the story of the NYU Medical Center evacuation (and here), which included an evacuation of their NICU, caught the attention of every preemie parent out there.

Many NICU parents (mothers?) feel intense guilt and lingering emotional distress from the experience.  I was the opposite of a calm and reasonable NICU parent in that I was high strung, angry, freaked out, terrified and generally difficult to deal with.  B was, as always, the good cop in that situation, and for every time that she talked me down she deserves an extra gold star.  But since LB came home, my NICU memories have faded.  Intellectually I know that was an incredibly hard time for me, but my memories are good.  When I think of the NICU now I remember cuddling a little LB, and our gentle routine of nights in the NICU, but all the fear and anger has faded.

One of my worst freak-outs was one night when I called to check on LB, and the phone in the Step-Down Unit rang and rang and no one picked up.  That had never happened before.  At the time, LB was generally very stable, but sometimes had bad blue episodes where she required significant help to get her heart rate back up.  The episodes were terrifying for us, made worse because they seem to freak out the nurses, who, no matter how often we warned them, always seemed shocked that LB could go from totally fine to really not good in an instant with no warning.  As the phone rang and rang, I could only imagine that LB had coded in the tiny Step-Down Unit with its one nurse.  I imagined a team working on LB, ignoring the ringing phone.  B said she would drive me back to the NICU, but then I was able to get through to the main unit.  But by then I was done, just hysterical and sick with worry.

Years before, I'd seen news the Katrina NICU evacuation and wondered at the horror of having your tiny baby shipped off to God-knows where, with limited communications lines.  While LB was in the NICU, I lived in fear of a winter storm like the one that had come the year before and shut down the city for at least a week.  Reading those stories about the NYU NICU brought back all those bad memories.  As a not super emotional person, that distress has been mostly generalized queasy feelings and snapishness.  I hope all those NICU parents are finding some relief and those babies are sleeping easy tonight.

This post brought to you by Prematurity Awareness Month!

Even more books about preemies

I've previously reviewed books about preemies here and here.

If you have been looking for books about preemies, you have probably come across the following books: The Preemie Primer: A Complete Guide for Parents of Premature Babies-From Birth through the Toddler Years and Beyond by Jennifer Gunter, MD and Preemies: The Essential Guide for Parents of Premature Babies by Linden, Paroli and Doron.  B. bought both of these books after LB was born.  According to B., both were disappointing because they lacked medical detail, and she would have preferred having a medical textbook about premature infants (this is, after all, the woman who was mistaken for a NICU worker for an embarrassingly long period of time by a group of med students).

I only wanted medical information on a need to know basis, but since I was so forgetful, it was nice to have a reference at home.  I think if I had to choose one of these books, I would choose The Preemie Primer because I found it better organized for my needs.  The Preemie Primer is divided by bodily systems (heart, lungs, eyes, etc.), while Preemies!  is divided by time period (first day, first week, hospital, home).  Since I was usually looking for information specific to LB's particular medical conditions, it was easier to find the specific information I was looking for in The Preemie Primer.  While these books can be useful as you try and formulate questions you want to ask the doctors and nurses in the NICU, I found it better to get my information directly from the NICU.  I suspect that the information in these book quickly becomes out of date, and the explanations lack the nuance you get from a conversation from someone working in the field.  LB's NICU was a teaching hospital, and our conversations with her doctors often when something like "Some studies have show A and some studies have shown B.  At this point we really don't have definitive evidence.  My preference is to do X for the following reasons, but some of my colleagues choseY for the following reasons, it's really a matter of preference."  Good doctors who you trust are worth a million books.  Seeing doctors and nurses at work in the NICU made me realize the mix of science and art that goes into caring for babies. Preemies can be so complicated and their symptoms often don't have clearcut causes, and no book can really explain that complexity, so the purpose of the books are to provide some basic information and some sense of control.

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

Another Book about Preemies

A month ago, I reviewed the books Extreme Prematurity and Fragile Beginnings here.  I recently read Half Baked: The Story of My Nerves, My Newborn, and How We Both Learned to Breathe by Alexa Stevenson, which is, among other things, a memoir about parenting a preemie.  I enjoyed this book, and if you like well-written medical memoirs, or you have smart, cynical friend who just had a preemie (and would not want you to buy her a novelty teddy bear hugging a heart at the hospital gift shop), you should check out this book.  If you just had a preemie, you might want to put this one aside and come back to it in a few months or a year.

I'm still not sure how I feel about the style of blogs to books.  I read blogs and enjoy the way bloggers write, but I often find that when I read a book I expect something different.  The breezy blog style doesn't always hold up and I often wish for more substantive chapters.  While I felt this way about parts of Half Baked, overall I felt that she managed the blog to book transition very gracefully. Alexa is still blogging here.

There were some experiences that she describes in the book the book that I recognized from my own experience with LB, particularly the brief period of post-baby euphoria, and an overall more relaxed approach to parenting post-preemie.

This book is the first I have read for pleasure as an e-book (on a computer, not on an e-reader) and the experience sucked.  I kept getting timed out, having to log back in, and waiting for the book to buffer. All that added to the fact that it is pretty much impossible to go back to a specific passage (in an e-book or a book on an e-reader), left me very annoyed.  I really hope the tech geniuses out there can fix some of the e-book design flaws before physical books disappear from the earth.  And don't even get me started on the Kindle, which clearly has its uses, but could only be considered a device of technical wizardry if we all went back in time and it was 1985.

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.

Gay Parenting in the NICU

The past few days have involved a lot of carrying a screaming, thrashing toddler through the streets of our neighborhood.  Thankfully, she can't fully verbalize her feelings, so the world only hears an angry "MAMAMAMAMA," rather than "This sucks! I want to do it my own self!  Why can't I stay at daycare! You are such an asshole!"  I'm sure that stage will be fun when we get there.  Thankfully, all the neighbors have seen and heard worse.  I saw a teenage girl on our street tell her mom and a cop, "I can do any fucking drugs I want to and you can't stop me!"  Is that what they call speaking truth to power?  There are at least ten kids under five on our block, so there's often a symphony of crying babies and they don't attract much attention.

During our first few months with LB, all of our parenting was conducted in the public space of the NICU.  This experience was not ideal, and only occasionally blissful.  It's hard to parent in public.  It's hard to parent in public under stress.  It's hard to parent in public under stress as a member of a marginalized group.  Lesbian moms in the NICU face specific legal and logistical issues.  In the urban teaching hospital where I had LB, Badger faced no problems related to NICU access.  Badger was able to go to the NICU and hold LB while I was still passed out from the birth.  I'm sure the NICU is used to dealing with diverse structures, and their default seemed to be to allow liberal access.  Despite our good experience, I was very glad that we had consulted with a lawyer with a lot of LGBT experience to get our 2nd parent adoption started.  If we had had a problem, we knew that she was someone to whom we could reach out.  [If meeting with an LGBT lawyer is logistically or financially impossible (and if money is a problem, call around to compare rates and ask about sliding scale fees), at least have the number of an LGBT advocacy group you can contact if you run into serious issues.]  We took all our paperwork to the hospital, but no one seemed very interested in seeing it, and I seem to remember that I had to force someone to take a copy of my advance directive.  If you are lesbian parents who know that your baby is likely to need NICU care, you can request a NICU consult before the birth-both to learn about specific policies, and to get a general sense of the NICU's attitude toward gay parents.  [While I try not to be paranoid and/or assume the worst about people, cases like this one, from NC where only one mom could adopt their child, and when the child was hospitalized the mom who was not allowed to adopt was not allowed to stay alone with the child overnight because she was a "visitor" and not a parent are incredibly distressing.  If we had had to deal with this crap while also dealing with a premature baby, I would have lost my mind.]

LB shortly before she came home

Most of our NICU time was spent doing the same things that straight parents did-crying, holding, staring vacantly, glaring, furtively texting, taking pictures, listening to the nurses gossip, etc.  The unknown is very stressful at the beginning of a NICU stay: will we get a nurse we like and trust, and additionally for us, will we get a nurse who isn't weird with us or freaked out by us?  We never got an anti-gay vibe from our nurses, and some of them went out of their way to make us feel comfortable.  So if no one challenged us, and no one disrespected us, why was it hard to be gay in the NICU?  In part, because it was just one more element of uncertainty in a scary and stressful situation.  Would someone say something offensive (and would I then flip the fuck out)?  Would people see us at our worst and use that image to judge all lesbian parents?  Would people watch our parenting and think we weren't good enough? In reality, as middle-class, educated, married, white lesbians, we were pretty low on the taxonomy of judgement.  It was usually the young, poor, African American and non-English speaking immigrants were occasionally treated with obvious frustration by some of the nurses.  The mildly insensitive comments we got (who is the mom?) came from the med students and younger residents-and I tried to remind myself that we were part of their learning experience.

My advice for parents: figure out who your allies are and ask them for help.  A sympathetic charge nurse or NICU social worker can help you find your way through the NICU.  And if you are too tired to address every problem you encounter, that is okay also.  You can always write a letter after the NICU is over.  Try not to stress and worry, which is pretty much the most useless advice ever.  My advice for health care providers: our primary goal was to have calm and competent care for LB, but the people we really liked made an extra effort to ask us little things like "So how did you guys meet?" or "How long have you been together?"  Normal questions that made us feel comfortable.

If you are looking for resources about the rights of gay families and what you can do to protect your families, these are some groups with more info:
Family Equality Council
National Center for Lesbian Rights
Lamda Legal
It's Conceivable

[Edited due to a serious lack of previous editing.]

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.

Two Books about Preemies

When Ladybug was in the NICU, I did no reading about preemies.  In terms of preemie parents, I was probably on the extreme side of not wanting to know any medical details.  I wanted to hear that LB was good, and if that wasn't true, I wanted to know that she wasn't going to die, and I didn't really want to hear the details.  With the rise in the number of M.D.s from Google University, I think most people want to hear what a doctor has to say and then they want to go check it out themselves.  In the NICU, we were given a lot of information, which for me involved listening to excruciating lectures with my eyes glazed over.  The NICUs focus on statistical risk always seemed useless to me as a parent.  Of course for a neonatologist, statistical risk is a useful tool, but as a parent I really don't care how 10,000 babies respond to a particular treatment, I care about my Ladybug.  From the neo's point of view, I guess statistics give them something to say.  Without the numbers they are just left with the truth of "I don't know," or "I have a hunch."

I've always like medical non-fiction, and now that I'm further away from LBs preemie days, I've started reading about preemies.

I recently read Adam Wolfberg's Fragile Beginnings: Discoveries and Triumphs in the Newborn ICU (2012) and I found it to be, not a bad book, but an odd book.  Wolfberg is a doctor and a medical researcher, but in the book he uses the experience of his own daughter, who was born premature, as a framing device.  Reading the book, I got the sense that either Wolfberg and his editor has very different ideas about the book, and/or that Wolfberg was uncomfortable sharing his families' experience.  I suspect that the author wanted to write a more scholarly book, and the editor wanted a book that would appeal to the broad audience of people who might be interested in the personal story of a preemie's survival.  The result of this tension is a series of interesting juxtapositions, a somewhat cold vignette about the author's daughter, following the story of a woman choosing to get an abortion at 23w 4ds, or a graphic descriptions of medical experiments on animals.  This back and forth gives the book a jumpy feeling.  Overall, this book was interesting and I don't regret reading it; however, if you know a family who has recently had a preemie and are wondering if this book is an appropriate gift, it is not!  Do not buy this book for anyone who has had a preemie!

I prefer Geoffrey Miller's Extreme Prematurity: Practice, Bioethics, and the Law (2007) and this preference is partly due to the fact that I find Miller's emphasis on ethics more interesting than Wolfberg's emphasis on brain plasticity.  Extreme Prematurity is a short book with a large amount of information.  The book contains sections on medical issues, bioethics, practices in different countries, and laws in different countries.  The author manages to be evenhanded, even when discussing controversial theories like utilitarianism.  I found the comparisons between the United States and other countries particularly interesting.  I definitely recommend this book for anyone interested in prematurity and bioethics, and I wish Miller would right an expanded version with additional detail.  Once again, this book is not one that I would recommend for families with babies in the NICU, but Miller has given the book a boring enough title that I can't imagine anyone mistakenly giving it as a gift.

Pass/Fail

It appears that Ladybug may be walking, slowly, and with the warning from our PT that she could still need braces, but definitely walking. With that good news, Badger took LB in for a hearing screen and the result was "mild hearing loss." The audiologist says that the most obvious culprit is fluid, and LB has had a continual head cold since October.  We've noticed in the past few months that LB has stopped using some of her words, and her new words are just vowel sounds.  For example, the cat at daycare is eeeeeeee.  Even as she uses fewer words, LB has become much more communicative with gestures, and her receptive language has gotten much better.  So here we are once again in the land of uncertainty.

Thankfully, Honey Badger don't care!