A Weighty Issue

It was impossible not to notice her-she wasn’t tall or remarkably good looking, but her knees jutted out at an odd angle and her thighs were thinner than her calves.  She walked across the room to pick up a magazine and balanced on one leg, more a flamingo than a teenage girl, and I wondered if she didn’t weigh enough to even topple over.  What was she, 12, 13, maybe 14 and she couldn’t weigh more than 65 pounds, a concentration camp survivor instead of a blossoming young woman.  She sat back down and crossed her legs, where they melded together and still didn’t look like one leg.  Her mother sat motionless, expressionless, unaware that I was staring while Lily slept on my shoulder, waiting for the nurse to call us in so her doctor could examine her, prescribe a higher dosage of Prevacid.  I’d seen teenagers in our pediatrician’s office before, mostly sulking, low shouldered boys and girls reminiscent of my students, rolling their eyes at their parents and laughing embarrassingly when asked to give urine samples.  But this girl, this poor girl who was being counseled to drink extra milk at dinner, she was a shell of a sullen teenager, barely subsisting on air and disinterest. 

This isn’t my first encounter with eating disorders-I work with teenagers after all, and I’ve had quite a few students taken out to rehab or special facilities.  We know them easily by their lightness, by their walk, by their uniquely controlled fascinations and concentration.  You’d be surprised by how many students I’ve had who were dealing with anorexia while also maintaining a near perfect GPA.  But I’m a mother now.  I see everything in a different light.

I can remember having a weight “issue” since high school-I think every girl does.  We’re so busy comparing and measuring up, wishing we could be someone else, look like someone else.  I look back on pictures of myself at 15 and 16 and I feel like shooting myself-why was I so blind?  There was absolutely nothing wrong with me.  Now I’m the heaviest I’ve ever been; well, the heaviest I’ve ever been while  not also pregnant, and even though I’m not thrilled about the way I look and I’m actively trying to change my weight and my shape, I’m also the most confident I’ve ever been.  I think it comes from a general contentment with my existence-a beautiful, healthy child, a loving husband, a wonderful life.  I don’t have the time or the desire to reprimand myself for not going to the gym because I’d rather spend the time with Lily.

Lily stays asleep on my shoulder the entire time I focus on this poor girl and her mother.  How do I prevent this future for my own child?  Instill a confidence in her that enables her to tell the world to fuck off, to allow her body to be her own? Maybe she’ll just get my husband’s metabolism and I won’t have to worry about any of this.

Creating a Jewish Identity

My husband and I are both Jewish, but neither of us is terribly religious.  I was raised Reform, went to Hebrew school until I was bat mitzvah’d, went to Jewish sleep away camp (long live Eisner) and lived in a home with separate dairy/meat plates and flatware (although it wasn’t really a strict rule).  We didn’t have separate dishes for Passover and my parents never blinked an eye at my cheeseburgers.  Until she became allergic later in life, my mother loved shellfish, and Chinese food just tastes better with roast pork friend rice and boneless spare ribs.  My mom only bought kosher meat, but not because of religious doctrine-she thought it tasted better (and it kills me to admit it, but she was right about kosher poultry-hi mom-see, the fact that you're right about something is now in print).  We went to synagogue on the high holidays, fasted on Yom Kippur, avoided leavened products on Passover and devoured latkes on Hanukkah.  And this all seemed normal-it was the same Jewish life that most of my friends were living with only small variations here and there.  But as an adult, and now a mom, I’m realizing just how important it is to create and strengthen my own Jewish identity so that I can help my daughter form one of her own.

The truth is, I’m an atheist.  I don’t think it’s that shocking if you know me, or even that shocking in this day and age.  But how do I consider myself a Jew if I don’t believe in God?  I see Judaism as my culture-if my ancestors had been from Ireland I’d consider myself Irish-but as we come from everywhere (Germany, Poland, Austria, etc...), the only unifying factor is religion.  While my version of Jewish culture doesn’t rely on faith, it does rely on tradition.  I love making a Passover Seder and spending hours on the perfect matzo ball soup (although, my matzo balls need some work).  I make a killer brisket and I can perfectly replicate my mother’s latkes.  I love going to the kosher butcher to buy turkey necks and chopped liver and Tam Tams and those egg rolls that they have at Wesley Kosher which I haven’t bought in years but are really, really good if you’re in the area.  The first Friday in our home I lit Shabbos candles.  I didn’t pray, because for me it has no meaning, but the act of doing it meant a lot.  The only thing that broke in our move was my menorah, and I’m still upset about it.  I plan on doing Tashlikh this year with Lily because I think it’s beautiful and I think she’ll get a real kick out of throwing bread (although she’ll probably just eat it).

I think that, at least in part, I’m working so hard at maintaining my Jewish identify because my daughter won’t see and experience the more traditional aspects of Judaism that I grew up with.  Both sets of grandparents were Conservadox (that’s a combination of Conservative and Orthodox)-they existed on a sliding spectrum at different points in their life.  Most of my memory lives with my mom’s parents-Lou and Lily (my Lily’s namesake).  My grandfather walked to synagogue and when we came to visit we used to wait for him to get home before we started our dairy lunch.  Their house was completely kosher, they observed Shabbos and they had separate plates for Passover-beautiful, green, Depression glass plates that I’ve inherited (there aren’t many left, I’m afraid). I hated dairy lunch and I hated how their services were all in Hebrew and I hated that I could never figure out the timers on the lights at their house.  And my daughter will never experience this.  She will never have the frustration of wanting a turkey sandwich and being turned down or having to wait for her grandfather to walk home when a car would just zip zip him home in 2 seconds.  I want my daughter to know all of these things, to know what a more traditional sense of her religion is like-I wish she could sit at my grandmother’s dining room table and feel that same frustration.    When I was older (and when she was older) I was having breakfast at my grandmother’s kitchen table.  I asked her which were the dairy bowls so that I didn’t accidentally take the wrong thing.  She smiled and told me I could use whatever I wanted-any bowl, any spoon-so long as my grandfather didn’t see.  At that moment my love for her increased tenfold.  When my grandmother let me break the rule, it somehow made the rule even more powerful, like we were co-conspirators in a fancy Jewish version of espionage against my grandfather.  I wish I could say that my grandmother winked at me and slid out the swinging kitchen door all Charlie’s Angels, but that wasn’t her style.  She sat down and sorted through her pills.

I remember lighting Shabbos candles with my father’s mother in front of this enormous mirror in their entryway.  The table was lacquered to a high gloss shine and the candles reflected from the table to the mirror and back again, bathing her in a sumptuous light as she bowed her covered head.  This is perhaps both the best and most beautiful memory that I have of my father’s mother, and it is a memory completely entwined with Jewish identity. 

My secular Judaism is filled with Woody Allen and Mel Brooks, fun with Yiddish, tremendous amounts of Eastern European delights, East Coast intellectualism, Gershwin (George and Ira), bagels and knishes and pickles (oh my), Arthur Miller, Joan Rivers, Hester Street, Fairway-the list goes on and on.  Perhaps this makes me a New Yorker more than it makes me a Jew.  But to me, the two are inextricably linked.

So here’s my plan. I’m already temple shopping-not actively, but I’ve already ruled out 2 places and am leaning towards option 3.  I only want to join a Reform synagogue because the Conservative ones that I’ve been to are way too restrictive.  We will go to services as a family, at least on Rosh Hashanah and Yom Kippur.  Maybe when she’s older we can have a sukkah in our backyard, too.  Lily will go to Hebrew School (maybe even Hebrew Pre-K) and be bat-mitzvah’d.  We purposely moved to a Jewish heavy town so that Lily won’t be the only one (my husband was one of two Jewish kids growing up).  I want to institute family dinners on Fridays-there will be candles but not a full out traditional Shabbos meal.  I’ll never have separate dishes and we’ve already cooked both lobster and bacon, but I do love my kosher chicken.  And I think I just need to be honest with her-when she asks what I believe, I’m not going to lie, but I am going to explain how important it is to me to be Jewish, to continue our ancestry and the values inherent in it; to see Judaism as not just a faith, but to see Judaism as a culture with its own identity.

Lily's first Shabbos-fast asleep in her carriage.

If Ever Two Were One, Then Surely We

I have an amazing husband.  (And no, he didn’t bribe me or put me up to this.)  I feel lucky every day, lucky that we found each other and we realized just how well we fit together.  Often, I find myself saying that my husband is one of the most enlightened men that I know-he gets up with Lily during the week if she wakes up before 6 a.m., he always lets me sleep in on the weekends so he can have private time with his little girl, he remembers anniversaries and birthdays and special relationship dates better than I do, he never gets mad about the money I spend or the things that I buy (granted, I’m not a big shopper so I think he gets off pretty easy on that account),  he admits that he has awful taste so he agrees to let me decorate the house and dress him however I want, he adopts my friends as his own friends and he gets mad when they get hurt, and he likes to catch me off guard with surprise gifts that show how well he listens. 

And the thing is…well…I’ve dated.  I was good at dating, too.  But even in retrospect, no one was ever this wonderful.  I’ll explain:

The hubby and I first met on J-Date, the online Jewish dating service.  Previous to meeting him, I went on many J-Dates, but they weren’t the most pleasant experiences.  I was meeting a lot of guys who I had nothing in common with, or who had terrible manners, or who were just plain weird.  I went on so many first dates I could write an entire book with each chapter being a different guy.   I was actually at a point where I wanted to give up on the whole online dating thing and go back to traditional dating: bars, begging friends to set me up, etc…  So, in a last ditch dating frenzy, I expanded what I was looking for and saw my husband’s picture.  He was pretty cute, and his profile said he was new to the city, so I figured a New York outsider might be a good idea (especially since I wasn’t hitting it off with any of New York’s current residents).  I sent him a message and we started chatting-we had a lot in common like football and music and The Simpsons.  He arranged for us to meet.

I am notoriously on time.  And by on time, I mean early.  I operate under the assumption that 10 minutes early means on time, and on time means late.  The hubby is the same way (another commonality).  However, on our first date, I was late.  Very late-almost 30 minutes due to a subway delay.  I left more than enough time for the unpredictability of New York mass transit, but apparently the 1 line did not want me to be on time.  By the time I got down to Christopher Street in the West Village, I was panicking.  I didn’t have his phone number, we hadn’t exchanged them yet, and I didn’t want him to think that I’d stood up him.  Luckily, he was waiting at our agreed upon location, Café Dante, and the lateness provided a good conversation starter.  That’s when I learned that he was also always on time and also, like me, did not drink coffee.  Meeting at a café seemed convenient but neither of us actually partook in the café’s goodies.  He had a Bailey’s and I played with a saucer of ice cream-I don’t really like ice cream.  We just talked.  We had a lot to talk about: I have the same name as his sister, he has the same birthday as my sister, he’s originally from the same town as my mother, we’re obsessed with the same TV shows…we were instant friends.

When I was careening down the street like a mad woman, attempting to make it to the date on time, I was trying to calm myself down.  “Don’t worry, you’re not even going to like this guy.”  I did this before every date so as not to get my hopes up when he turned out to be a tremendous loser.  But my first appraisal of my husband was, “not too bad.”  He was cute and he was dressed appropriately.  I was immediately relieved that I wouldn’t have to teach him to dress.  I was wrong-this was his one nice going out outfit, and I did eventually overhaul his entire wardrobe.  My husband loves this-he hates to shop so he’s very happy to have me do it for him, and once I started coordinating his outfits, he started to get compliments.  Now he can do it all on his own.

We walked around for hours.  My husband’s experiences in New York were sorta limited, so he relied on me as a guide.  We walked up through the village and through Union Square.  We watched the rats and the squirrels chase one another until a security guard kicked us out.  He was just a nice guy who kissed me on one of the benches, spat out a cheesy line, and then laughed at the sheer corniness of what he said.  Honestly, I didn’t know if I liked him, but I had so much fun on the date, I figured that I’d give him a second date to sort out my feelings-to see if I had any.  I was leaving on a school trip to London for a week and I said that I’d call him when I got back.  Actually, he called me, before I left, to tell me he had a great time, but I didn’t know that it was him.  See, my husband has awful handwriting.  I grew up with a left handed doctor for a father, so I know bad handwriting.  My husband’s is so awful that when I entered his number in my phone, I entered the wrong number. I literally could not read what he wrote down.

My mother has this theory.  Well, it’s not really my mother’s theory-it’s the theory of her next door neighbor’s mother (when she was growing up in East Meadow).  When the neighbor’s mom was young, she had a particular philosophy on dating-she had three dates every weekend: a Friday night date, a Saturday night date and a Sunday afternoon date.  She figured that she would continue to date all three gentlemen until one proposed.  Saturday night proposed first and so she married him.  This dating strategy begat a theory: have a Friday night guy for fun, a Sunday afternoon guy for brunch and a Saturday night guy for seriousness.  So, after I met my husband I wasn’t sure about him.  I thought maybe he could be a good Friday night guy.

The hubby is 100% not my type-we’ve talked about this a lot!  I’m not his type either, which is why we were sorta confused about each other at first.  I normally like short, nebbishy guys who are really literary and pretentious, somehow interested in the arts.  My husband is tall and sporty and doesn’t understand three quarters of the references I make.  But, the cool thing….early on in our dating life, when I asked him what he liked about me, he said that “I can learn from you.”  He was really open to new experiences and learning about what I loved.  I, of course, reciprocated: we joined a co-ed recreational soccer league.  I even went to a Jets game with him, and as a die-hard Giants fan, that’s really going the extra mile.  He occasionally takes me to theater and museums-I even negotiated a Woody Allen film.

I called him when I got back from London and we made plans.  He was shocked that I didn’t have jet-lag.  We met for a movie and when I saw him in front of the theater he had a present for me.  Most guys bring flowers or chocolates or something else totally generic and devoid of actual thought, but he brought a c.d.  Okay, I know that’s strange, but on our first date two and  half weeks prior, I mentioned that while I was in London, a band I really liked was putting out a new c.d.  Well, he bought it!  He actually listened to what I was saying, remembered and bought it for me.  I was completely flabbergasted.  I’m pretty sure that prior to my husband, no man actually made a mental note like that.  He still does it to this day-he’ll surprise me with theater tickets because I mentioned a show I wanted to see.  He’s unbelievably thoughtful.  Because he didn’t know New York he asked his New York friends about good restaurants and activities for us to do-he researched and made everything special, instead of just winging it.

While watching the Tonys earlier this year, I mentioned that I didn’t want to go to sleep until I’d seen the segment from Roger and Hammerstein’s Cinderella-that it had been one of my favorite musicals as a child.  I still remember going with my father to Erroll’s and being allowed to pick out one video rental.  I always wondered why the Beta section was so large with a much better selection, and I couldn’t understand why Beta wouldn’t work in our VHS player.  I’m sure my parents must have explained it to me, I do remember a friend who had a Beta player, but I think my 7-year-old brain had trouble wrapping itself around the difference.  Sometimes I rented the Beatles’ Yellow Submarine.  And sometimes, I rented Cinderella.  So at 31 it didn’t seem strange at all to be singing along to “In my own little corner, in my own little chair, I can be whatever I want to be,” while my hubby looked at me somewhat askance.  He’d heard me sing the song before, I sing it to Lily all the time, but this was different.  He made a mental note.

Less than a month later, after Lily went through a horrible bout of separation anxiety (from which I wanted to abandon my life), the hubby came home with a surprise: he had, behind my back, booked my mom as babysitter and purchased tickets to go see Cinderella.  He could see how tired I was, how worn out and down I had been getting, and he thought I deserved a treat.  What man does this?  No one I’d ever dated before my husband was this thoughtful or compassionate or loving. 

When my friends complain about their husbands or boyfriends or ex-husbands, I normally just sit there with my hands quietly folded in my lap.  Sure, things aren’t perfect, and my hubby and I have our issues (in general, men are idiots, and he certainly has his moments), but I don’t want to complain. 

I hope that Lily has the luxury of one day meeting a man like her dad, so that she knows what it’s like to be loved and respected like this.  I hope that, as the first man in her little life, Lily realizes what men can be like, that men like her dad do exist, and that they are totally worth waiting for!

If I’m a Chicken You’re a Turkey

This is something I’ve been dealing with a lot lately, so I figured I would just say it: no, I am not cool enough for you, and I really don’t give a crap.  Mostly because I’ve never been cool, never wanted to sit at the cool kid’s table, or belong to the cool kid’s club, never wanted the recognition or judgment that comes with being cool.  I’m very happy just being dorky ‘lil ole me, obsessed with British period pieces and literature and art and crossword puzzles and Simpsons references.  I actually have repeated dreams where I can read with my eyes closed! I wish it was true.  I’ve always been “artsy,” as my mother would say (although lately her descriptor has been: “bohemian”), and pretty unconcerned about what was trendy.  I don’t like trends-they’re flippant, and not in that good way when I brush off your dumb-ass remark with a twist of my wrist and a sarcastic comeback.  Classic, I prefer classic-give me Katherine Hepburn and you can keep your Kardashians.

I might teach in a high school, but I’m not in high school.  I don’t need people to like me-honestly, I don’t want too many people to like me.  I have enough friends as it is, and I don’t know how many more friends I want.  I prefer real, true friends to casual acquaintances-it’s hard enough to keep up with my besties with our busy schedules, work, children, husbands, families, etc...I barely see my best friend once a month and I miss her like mad, but I know if I needed her that she would move heaven and earth to be with me (and I know this because it’s happened before).

Your innuendoes aren’t so clever, and I’m a lot smarter and a lot more perceptive than you realize.  You’re really not fooling me-hell, you’re really not fooling anyone for that matter.

I don’t like drama.  Really.  Ask my husband, because he will attest to the fact that I’m pretty drama free, mostly because I’m a mature adult, but also because when I have an issue with someone, I confront that person.  I don’t pussyfoot around in passive aggressive bullshit mode (although, this post is beginning to feel that way).  When I complain about something it’s because I’m upset, not because I like to complain.  And like any woman all I want is for you to listen…not necessarily fix the problem.  Trust me, I will fix it on my own.   I think I got all my complaining out in my adolescence.

Aside from my husband, my daughter is my favorite person in the whole world.  And I won’t want her to have to deal with “coolness.”  I see bullying pretty first hand so I know the toll that it takes on teenage girls (and anyone who thinks, “Well I was bullied and I was okay,” doesn’t know what bullying is really like nowadays-it’s become inescapable with no retreat to the fortress of solitude).  My friend “N” thinks that I have a very healthy sense of self (that I have great self-confidence), but I have no idea about how to instill this in my child.

Traveling with a One Year Old

The plane was the best part-no crying on take off or landing in either direction.  Containment was an issue as all Lily wants to do is roam, so we spent a lot of time walking up and down the aisle to the delighted oohs and ahhs of the passengers.  Who knew that a non-fussy baby would be beloved on an airplane flight?  As a childless single I cringed at the mere sight of a child on a plane.  The fact that Lily spit up all over herself just prior to the flight didn’t seem to deter anyone, either.

We did everything we could to make the trip successful.  Lily had her own seat on the plane and she traveled in her car seat.  She was buckled in for take off and landing and turbulence-the internet told me so.  I called the FAA multiple times to verify that we could bring Lily’s medication, over 3 ounces, on board, and that we could bring frozen freezer packs to keep the medication cold, a medical requirement.  I’m sure that my name is on a watchdog list now and the NSA is tapping my phone lines, but that’s okay. What are they going to hear? Me talking to my mother.

When I was young-I don’t know exactly how young but somewhere between 6 months and 2 years-my parents and I flew to California so I could meet my great grandfather.  I’ve seen the photos so I know my parents aren’t making this up.  On the flight my mother pre-loaded a bunch of Easter eggs with little surprises for me, so after I’d been good for a set amount of time, I was given an egg, and then another egg, etc...etc…and the bribery worked.  We tried the technique with Lily and it failed miserably; she didn’t care about the eggs, but she knew that the eggs contained yummy, snackable goodness, so she just whined until I gave her the container of snacks.  Sometimes she’s a little too smart for her own good.  The hubby was worried about the plane ride, about disturbing the other passengers.  I just rolled my eyes and repeated, “We are flying from Newark to Ft. Lauderdale; this is the ‘going to grandma’s house’ flight.  The plane will be filled with kids.”  It was!  And aside from a conference goer or a random vacationer, everyone was going to grandma’s.

Prior to traveling the hubby and I had a long conversation about the hotel-I explained and explained how it was necessary to have more than one room, to have a kitchen, to do whatever we could to make our lives a little bit easier.  He didn’t believe me at first.  Being the youngest and not traveling too much as a child, my hubby was a bit naïve when it came to the realities of traveling with a child.  He was very glad that I talked him into everything-so when she napped, which is still twice a day, we could shut the door, so when she cried herself to sleep at night, which she is still doing and it drives me insane, we could shut the door, so when she needed a play room and one of us needed a nap…so when she needed a quick meal I could just whip one up in the kitchen…the list is extensive.  The hotel staff and long stay guests fell in love with her as we walked up and down the halls or when we fed her Belgian waffles at the breakfast buffet.  Lily was having the time of her life.

On the way home we were delayed…so Lily spent all her good napping time in the airport, waiting to board the flight.  Once we finally boarded she woke up, but I didn’t blame her (she was already asleep for an hour at that point).  Lily loves turbulence and flight attendants and little bags of chocolate chip cookies Jet Blue gives you as a snack.  She also loves the video monitors in the headrests.  Her cuteness got me expedited through security and the TSA was crazy nice to us!  I may never travel without my daughter ever again.

The reason we went to Florida was so that Lily could meet her great-grandmother Doris, Warren's paternal grandmother.  And, so that Doris could meet Lily, too.  They enjoyed each other's company very much.

Congratulations, You’re Completely Healthy

The doctor called yesterday-my bloodwork came back normal. We are now completely answerless-no one knows what happened, and we will basically never have an answer. There is nothing to treat and there is no certainty that it won’t happen again.

My husband is a bit of a gambler.  Not like, going to A.C. and blowing his paycheck type of gambler (although, he did that once in Vegas about 5 years ago and it scared the crap out of him, so he hasn’t been back since).  He places bets and plays cards, pretty well too, and he likes chance and risk and odds-it’s his mathematical brain.  My literary brain likes comfort and stability and books from the 19^th century, words like ephemeral and wainscoting, PBS/BBC hybrids and the Bravo network.  I like my evening soap operas soapy and foreseeable, just like my romantic comedies.  I am rarely surprised by thrillers or guess who’s and I like it that way (I’m one of those people who thought Bruce Willis was dead at the beginning of the movie-I study words for a living-it’s very rare that I find any movie, tv show or novel anything but predictable, and I like it that way).  I don’t do well with uncertainty.

Without a diagnosis, without a reason and solution for what went wrong, having another child is a gamble.  What if something really is wrong with me, something undiagnosible, and it happens all over again?  Only, what if it’s worse and we lose the baby?

I cried so hard last night that all the fluids in my body rushed to my nose and I couldn’t clear it.  I woke up with puffy eyes and a nagging headache from crying dehydration-you know, when you’ve cried so much that there is no more water in your body and you’re both thirsty and swollen.  My heart literally hurt.  It’s strange-the difference between those who understand by misery and those who think it’s better that there’s nothing wrong.  My husband understands, but he still wants more children.  I don’t know.  I asked him if it was okay, if we could just have Lily and be done, and he said yes, but that he thinks he’d resent it.  I understand that.  I’d probably resent him too if, after all our discussions about how many kids we wanted to have-maybe 3, he suddenly decided to get a vasectomy.  A wonderful study in expectation versus reality in my bedroom.

I feel a little trapped-I really, really want to have another child, but I’m so scared that I’m having trouble holding it together.  I had nightmares last night about ants crawling over my body and itching the crap out of me-I kept waking up and scratching and swatting at my limbs, convinced that they were there.  Aside from the neurotic fear that I’m developing formication and should be checked into a mental health facility, there’s the fact that I am so completely freaked out by ants that of course they would enter my nightmares, torment me in my desperation; my subconscious, yet another place where I have no control.

As promised, a recent picture of Lily!

Why Did This Happen?

As I meet more and more people, I am constantly confronted with the same questions: How old is she? She’s so small-is she catching up?  Why did that happen? And I have the same responses that I’ve reiterated for almost a year now, but answering how it happened, why it happened, that’s a little harder.

There are two possibilities: 1. I had a virus that was undiagnosible and was a total fluke thing or 2. I have some kind of blood disorder that is normally dormant and only exhibits symptoms when pregnant.  In the case of #2, all they do is give me injections while I am pregnant which guarantees that it won’t happen again-it also explains the miscarriages.  So next week I have an appointment with a hematologist to draw a serious amount of blood and test the blood for every thrombosis under the sun.  I am hoping, praying that I have a blood disorder; a real, treatable, diagnosable disorder that answers all of the questions, the how and the why.  Because if I don’t have a disorder, if this was all just a fluke thing and the doctors can’t determine if it will happen again, I don’t know if I could do it all over again, sit in a NICU for 11 weeks, lose all sense of myself, not take my baby home with me…no, I take that back, I know that I can’t do it all again.  Please please please universe, please say that I have a blood disorder, because I really want to have another baby, I want to experience my water breaking and driving to the hospital in painful anticipation and giving birth and putting my baby to my breast and having visitors come to visit and hold the baby and say “how beautiful,” instead of the tears of fear and bated questions that followed initial trips to the NICU.  I want hand-me-downs and sibling rivalry and family vacations, like the time when my sister and I spit partially chewed potato chips at each other across a minivan to the utter chagrin of our mother.

I won’t know the results for a little while, but the answers will determine a large chunk of our future as a family.  And my husband didn’t understand my reticence in making the appointment.

What is She, 4 Months Old?

At a recent physical therapy appointment, another mom in the waiting room remarked, “Aww, she’s so cute.  What is she, 4 months old?”  Lily was busy playing on my lap, planting her legs, standing up, smiling, laughing, trying to crawl over the armrest of the chair and kissing me.  “No, she’s 10 months old, but she was early so she’s a little thing.”  She’s not so little anymore, either.  She’s in either 6/9 or 6/12 clothes, depending on the brand. 

I’m pretty used to these kinds of questions from non-NICU adults, but this was a little unexpected in the physical therapist’s waiting room.  If you’re in this room, then your child is getting help for something.  It could be a small something; it could be a large something; it could be a devastating something-but that’s not the point.  There’s something, some reason that you’re here, so I would think (hope?) that you would be more sensitive with the other moms. I would certainly never turn to a stranger and comment on her child’s age and/or ability level.  We often run into other NICU moms at PT, and of course we catch up and ask questions, but we are kindred.  We’ve been in the trenches together, dug down deep into the thick mud and made it through the Somme to dry land and shelter.  We survived.  Most of us had terrible shell shock, but we made it and only we can understand each other.

Waiting room lady followed up with, “I was wondering, because she can do a lot of things.”  I guess she thought I had a very advanced 4 month old?  And then her daughter came out of the office.  Her daughter has a devastating something.  My heart dropped and I wanted to hug waiting room woman so hard-I could forgive her presumption and her, well, I guess it’s not callousness, but something akin to callousness…I could forgive it.  I am lucky. We are lucky.  Lily is crawling, actually crawling, and she can go from a crawl back into a sitting position all on her own, every time, and we are lucky, so, so lucky.

Around The World

According to the “Audience” option on this website, I have readership in Poland, Brazil, Russia, Pakistan, Indonesia, Romania, Turkey and Israel.  I have never been to any of these places.  My travels have been limited-various locations in the U.S., Canada, England, France and Italy.  When I was pregnant I went on a cruise to Mexico, where I got off the boat but only walked around the port, and there was a second location but I never got off the boat so I don’t think that it counts (Belize, the hubby says it was Belize...like in the Carmen Sandiego song).  I am completely humbled that people actually read what I write-and people in cultures and countries so vast and different from my own…I don’t even know what to say. Thank you.  I hope that what I write means something to you-you could even hate it (that’s fine with me).  But, I’d love to hear what you think.  Please feel free to comment, especially if I don’t know you.

In Defense of Friendship

Part of being a good mom is having a life outside of your child.  I am completely convinced that the other women in my life, my best girlfriends, other mommy friends, my own mother, are who keep me sane and happy-they make me a better mom and they keep my brain active, and on most days I’m convinced that my brain is melting into some kind of oatmeal like consistency-without the cinnamon sugar goodness.  So when something bad happens to one of my besties, I get angry. More and more I also find myself going into mom mode and getting very protective, and I assume that it will only get worse over time.

I have this friend.  Let’s call her Emily (I don’t know why I chose Emily-I think I’m just upset that Revenge is on hiatus). Emily and I have been friends for a long time, through break ups and make ups and immaturity and now, as adults, through very grown up-type problems.  She was one of the first people to visit me in the hospital when I had Lily, and even though Emily is a girlie girl through and through, she understood my no tutu and no hair fluff proclamation and she brought presents that she knew that I would love.  Emily is kind and thoughtful and dedicated to her job-which, without giving details, is a pretty damn selfless career-Emily is friends with everyone, regardless of race, religion, socio-economic status, fashion sense, etc, etc…(honestly, I don’t know if she even sees those things).  She’s just not a judgmental person and she always sees the best in everyone; even after people repeatedly let her down, she still gives chances and encouragement (sometimes I want to kick people out of her life for her because people can be mean, but Emily cannot).

Here’s the hitch-Emily is gorgeous.  Very very very gorgeous.  So gorgeous that my father who could never remember any of my friends growing up (we used to play this game where he had to name 5 friends-he always failed), he always remembered Emily.  She’s also crazy talented and outgoing and friendly and chatty and loud and consummately energetic.  She’s the kind of girl that other girls like to hate on-and right now another girl is hating on her, pretty bad. And that girl is her boyfriend’s sister.

I’ve had my fair share of problems with boyfriends’ families.  For some reason their parents never like me, even though the parents of my best guy friends would beg their sons to date me and marry me and make little babies with me (and trust me, my kid is capital ‘c’ cute, so they would’ve been pretty happy).  I’m sure I’m to blame for a lot of it-I’m pretty bad at making new friends and I get very awkward in social situations-sitting back and playing observant mute is my go-to move.  There was one holiday dinner with an ex where I spent the entire time talking to his mother’s best friend about a little-known novel about Jewish immigration in turn of the century New York.  I even faked not knowing how to do my hair in order to have a bonding moment with a different ex’s sister.  I’m pretty sure that one ex’s entire family hated me because of the guy I dated in high school-by that logic I would’ve hated me too-my high school boyfriend was a nutjob and I must’ve seemed very dramatic as a result.  But Emily’s situation is worse.

My exes had the common decency (or just common sense) to NOT tell me about their familial issues-I mean, I could tell, and they could tell, but the issue was more of a no fly zone-just leave it alone and don’t talk about it, and if anyone interrupts the peaceful continuum, there will be hell to pay.  Emily’s ‘mean girl’ is nasty-she grumbles about Emily every chance that she gets…to the boyfriend, to the family…and her complaints: “Emily only talks about herself, Emily is conceited, Emily is self-involved.”  To be fair, yes, Emily does talk about herself, but it’s not braggy or showy at all-Emily does a lot of things and she’s involved in many organizations and clubs-the best stories are when Emily tells you about her day, about what happened at work and then what she did afterwards.  She’s not doing this to pat herself on the back or make sure that you know just how great she is…honestly, Emily doesn’t think that she is great.  She’s ridiculously modest.  And when she’s done telling you her story, Emily wants to hear every detail of your day, even the most basic minutiae are interesting to her.  But this mean girl doesn’t care-she seems to be hell bent on driving a wedge between Emily and her boyfriend, and I think it comes from a variety of reasons. 

Firstly, I don’t think that the mean girl understands that Emily is completely without guile-Emily doesn’t have a single malicious bone in her skinny, toned body.  She isn’t conceited at all, and chances are that you only think that she is because you haven’t gotten to know her.  Which is sad…for you…not for her-trust me when I tell you, your life will be darker without Emily in it.  Secondly, and it’s even more pathetic because it’s true about women in general which makes me want to vomit, but I think the sister is jealous.  Emily is gorgeous and fit and did I mention GORGEOUS.  In high school we used to have the “Emily Test,” when we’d introduce our new boyfriends to Emily and if all they did was stare and start hitting on her, we’d dump them.  She never knew that we did this.  But women get like this-they get super jealous of the pretty girl and then they treat her like crap.  Girl on girl crime…it’s pretty serious.  Thirdly, and I know I’ve been there before (I’m Jewish, and Jewish moms aren’t always too happy to get rid of their precious, princely sons-I swear, being Italian and being Jewish are the same freaking thing), but the mean girl doesn’t seem to want her brother to grow up, get serious with a woman, detach slightly from his family and have his own life.  It’s one thing to not like the person your brother or sister is seeing, but it’s quite another to outwardly and repeatedly bad-mouth that person to your siblings, parents, anyone who will listen, etc...etc...Mean girl has an agenda, and that makes me angry.  Granted, if my sibling was marrying a kid toucher or a sociopath I’d have a lot to say about it, but that’s neither here nor there (my brother-in-law is awesome, by the way).

I’m supposed to stay out of it, but it’s hard.  All I want to do is to defend my friend, who has done nothing wrong-it hurts me that she’s hurt.  I want to have a serious sit down with the mean girl and explain just how judgmental and idiotic she’s being (because, in the long run, she’s only going to damage her relationship with her brother), but I’m supposed to stay out of it.  I sense a similar situation with Lily when she’s a teenager and she gripes to me about a mean girl at school, and of course I’ll know the mother because I’ve already met a lot of the mothers in our town, and Lily will be hurt and crying and then part of me deep down inside will break and my mother rage will kick in.  I’ll be midway through dialing the mother’s number when Lily will tell me to “stay out of it” because I’ll “only make it worse.”  She’ll be right of course-whoever heard of parent involvement actually fixing these kinds of things-but that broken part inside of me won’t heal until Lily heals.  I don’t think I actually healed from adolescence until my mid-20s, so I guess I have a long time to wait until I feel whole again.

Doctor, Doctor, Doctor, Doctor…

Lily had many doctors and many other specialists in the medical field-it actually feels narrow to use the word many-maybe multitudes or plethora or tremendous amount- something really big would be more accurate.  Growing up around hospitals, with my dad, our multitude of medical professionals was normal to me…not normal to the hubby or anyone outside of the medical field, though, so I was always explaining.  There was the head of the neonatology department, the entire neonatology staff, at one point an ENT, an army corps full of nurses, the feeding specialist, once we left, we had our follow-up neonatologist, the physical therapist, eventually a pediatrician, the sleep specialist, and many others who I’m sure I’m forgetting but who crossed our path at some point.  Once we were finally discharged, we had neonatology appointments, pediatric appointments, physical therapy appointments, and sleep specialist appointments.

I think that before I launch into what will, most likely, be termed a tirade, I should state that I really loved all of the neonatologists.  Follow up appointments with Dr. Pane, running into Dr. Manginello and the rest of the staff…it was a joy.  They were always positive and progressive and, honestly, familiar.  They praised Lily and they praised my care of her.  They saw Lily as a resilient little miracle, and seeing my child through their eyes was a delight.  I also love Lily’s pediatrician, Dr. Muntaneu, who is very close to my age and currently pregnant with her first child.  She is always impressed by Lily’s progress-she’s positive and delightful and human.  She treats me like I’m the expert and she never talks down to me, even when my question is a bit on the stupid side.  I am in love with Lily’s physical therapist, Lisa.  To this day, I look forward to Lily’s physical therapy appointments because I know that the half-hour will be filled with encouragement and glee.  But this post isn’t about all the people I love…this post is about my extreme dislike for one of Lily’s doctors, one who will remain nameless because I don’t think it’s right to eviscerate someone on the internet without her having the ability to defend herself.  She was Lily’s sleep specialist-she was also the first person who I ever wanted to have a big dick contest with because I would have slapped her into oblivion.

Dr. Pane, Lily’s neonatologist, gave us "permission" to have Lily sleep on her belly because of her awful acid reflux...her exact wording went something like "there is a higher risk of her dying from aspirating while on her back than the risk of dying from SIDS," which wasn't reassuring either, but at least Lily could sleep comfortably. Plus, she was on a monitor that freaked out if she stopped breathing! The pediatrician agreed with Dr. Pane (with warnings to be extra cautious and to still encourage “back to sleep”), the physical therapist wasn’t happy about it either, but the sleep study doctor who controlled the apnea monitor nearly had a heart attack when I explained this to her and she went on a half-hour-diatribe about why what I was doing was wrong. AND she tried to teach me about child rearing and SIDS.  This was the first time I met the sleep study doctor-she hadn’t been with us at the hospital the past 3 months. She had a written record, Lily’s chart, to refer to, but she knew nothing about me or my child or our circumstances. I wanted to be like, “Fuck you lady, I've been through hell,” but I held my tongue and nodded.  Maybe she should’ve come to my house and listen to my tiny baby scream and vomit while lying on her back.

Visits with the sleep doctor were sporadic…she would waltz in at the end of the appointment to tell me what a bad job I was doing, or how many “episodes” Lily had according to the equipment.  And it didn’t seem to matter how often I told her that the machines were going off falsely, or that we weren’t using them as frequently…no, the machines were right and I was wrong. The sleep doctor’s nurse was really nice, though.  I liked her a lot.

After weeks of weaning without incident, Lily was officially off of oxygen on November 12-I remember the specific date because it was the day after my birthday and we said it was the best present ever.  Plus, who the hell forgets when their 11-week NICU bound child goes off of oxygen! Our last neonatologist appointment was November 26-it was our goodbye visit and it was bittersweet.  We loved Dr. Pane and all the doctors in the NICU, but we were so happy to see how far Lily had progressed-we had made it over a huge hurdle. We had an appointment with the sleep doctor on December 7 to do a download and to schedule the sleep study...according to the sleep doctor, Lily would need to be hooked up a ph probe and about a million wires to be monitored for a 5-6 hour period in order to get rid of all her equipment.  The doctor didn’t schedule the study-instead, she scheduled a follow up appointment and said that her office would call our insurance company to get permission for the sleep study.  I was confused, but I didn’t question it.

We finally received permission from our insurance company 2 weeks later, and they said a copy of the approval was sent to the sleep doctor’s office-I should wait to hear from them shortly about scheduling a date. A week went by and I didn't hear from them, so I called their office and left a message with the nurse (who I love) that we got permission. When I spoke with her, I asked if the sleep study was mandatory, and she said “No, you don't HAVE to do it,” and that we could return the equipment AMA (against medical advice), but she'd have the sleep doctor get back to me. What followed was three days of back and forth because the FUCKING IDIOTS at the doctor’s office-although I think it was just the doctor because the nurse was unbelievably sympathetic and even sorry whenever she called-wanted Lily to do the study, which was now 8-10 hours-not the previously mentioned 5-6 hours, or to be monitored for 14 days without oxygen at home...When I explained we hadn't used the monitor since our December 7 visit and that Lily hadn't been on oxygen since November 12 (so the download at the December 7 visit would've covered the 14 days) I was told that I was incorrect. That according to their records, the oxygen didn't stop until November 26. We had a little back and forth, I used some strong words and strong language, and a few phone calls later, they apologized for the confusion.  In all this back and forth, I never once spoke with the doctor.  She never got on the phone, never called me, never asked how my baby was doing…she just sat in her office making her nurse do all the dirty work, letting her nurse deal with my rage.

At the time, I was infuriated-how dare you toy with me and my child, making me feel incompetent and idiotic when it was your poor record keeping and inability to get to know your patients which really caused the confusion.  How is it possible that your office never contacted me when they got the approval?  The machines were in my house for nearly a month longer than they needed to be, creating more bills that we didn’t want to deal with.  Where did you go to medical school?  Why didn’t the alien overlords implant a sensitivity chip when they placed you on Earth?  Could you even pick me out of a line-up?  I know you couldn’t place my child, because you’ve never looked at her-not when she was rolling around your exam table, or sitting on my lap having a bottle.  This was the first time in my life I ever considered doing anything AMA (against medical advice), and it’s because my gut kept telling me that something was not right.  This doctor was not right.

A Constant State of Fear

There are many things that new parents worry about-the list is really too long to type out fully-but there’s another list, a list that only applies to the parents of preemies.  On top of the machinery and the medicines and the feeding issues and the apnea and the growth charts and the milestones, there’s another fear: a pervasive and unyielding fear that your child is going to catch a cold, or contract the flu, or, worst of all, get RSV.  And because of this fear, and the doctors’ most strident warnings, you never leave your home, never expose your child to the germs, because these seemingly innocent bugs can actually be fatal.  You see, the constant state of fear is made even more real because, well, it isn’t unfounded-you should be afraid, very afraid, because fatal means fatal.

Colds are usually pretty low on the list for new parents-all kids get colds, generally when they stop breast feeding (immunities and what not), but for a preemie, especially a preemie in her first few months outside of the NICU, a serious enough cold could be difficult and could require an additional hospital stay.  We were given strident doomsday warnings about Lily getting sick, because getting a common cold could turn into RSV, and RSV in her preemie lungs could be fatal.  Everything could be fatal.  The man in the grocery store picking up the soup can next to my soup can could have a mild cough, which could be the beginning of pneumonia, which could kill my child.  So you don’t go outside-you limit your contact with the rest of the world in order to stave off any life-threatening carrier germs.  No one is allowed in your home, either (except for the occasional relative, mostly childless couples because children are the real carriers).  You sit alone in your house, day after day, watching daytime television and eating everything in sight while you watch your baby sleep away the day in germ-free oblivion and part of you starts to disappear-you look forward to your husband coming home at night because it’s probably the only other human contact that you’re likely to have-friends promise to come over but their kids are sick, or they have a sore throat, or the timing is bad-and, honestly, you’re not upset with them because you understand.  That’s life-things happen and you can’t be angry about them.  It’s like post-partum depression, except you’re not sad and you’re not confused.  You’re just lonely and bored and so consumed with fear for your infant that you manage the fear anyway that you can-for me, self medication through food, reading tons of books, watching television, and psychotically obsessing about your child’s wellbeing.  But the boredom and isolation are pretty bad.  Why shower, if you’re not going anywhere or seeing anyone?  Why not eat an entire bag of Hershey’s Kisses?

Infants cannot receive the flu shot until 6 months, and ours was scheduled for early February-there was a serum shortage so we had to wait almost 7 months.  Fear of contracting the flu was the reason that I didn’t go back to work in February.  All of Lily’s doctors agreed, “This child cannot be in daycare during cold and flu season.”  You know who dies from the flu?  Old people and babies, so October through February I sat on the couch, most of the time alone, neither happy nor sad about it-I guess numb and disengaged, but still really present for my child, creating a rhythm for the both of us, learning what she liked and when. 

I’m not sure what RSV stands for, but I like to call it Really Scary Virus.  When adults get RSV it’s like a normal cold, but for babies, and really for preemies, it can be deadly-everything can be deadly. Everything should scare the shit out of you until you beg for mercy for another adult to handle your life for just a little while.  You were a person once: you got your nails done and your hair done and you went to work and you saw adults every day and you talked about more than bowel movements and feeding schedules and you went out for meals and you had girls’ nights and you showered daily and put on makeup and did your hair and you walked around the best city in the whole world on a daily basis…and now you have to wait for your mother to come over and watch the baby so you can have 10 minutes to yourself! Never mind your nails or your hair or any of the rest of it…the monotonous routine and life you’ve created for yourself have turned you into someone else, someone barely recognizable because the fear has taken over.  You are the fear, the all-consuming and Where the Wild Things Are style fear the covers you like a cloud and rains thunderbolts over who you once were. 

And the thing is…you don’t entirely mind.  Becoming this other person isn’t the worst thing in the world.  You like being mom.  You like not being a carrier.  You don’t like your roots, but you don’t mind missing the hours in the hairdresser’s chair.  And you LOVE having an excuse to not see people.  Then you look in the mirror and you have a weird meta-moment when the fear starts to peel away and you see yourself for who you really are.  You tell the fear, “Time to take a backseat.”  Bit by bit you reclaim, you take the baby places because, really, she’s had her flu shot and she is allowed to be out in the world. The baby LOVES it and is fascinated by all the sounds and sights and car rides…meeting new people turns out to be delightful and she’s incredibly social.  She gets a cold-and it’s not bad.  Three days of uncomfortable and then, she’s fine.  Like it didn’t happen.  And guess what?  The fear is gone…as are your roots.

Hurricane Sandy

We had just moved into our house-barely 3 weeks and expecting a hurricane with a preemie who required electricity-refrigeration for her medications, power for her monitors and oxygen, heat because she couldn’t yet regulate her body temperature.  We expected to lose power-our neighbors had warned us that if happens, a lot, in our neighborhood.  We had flashlights and coolers and I even spoke with PSE&G because we had priority power restoration due to Lily’s medical needs.  I spoke with her doctors who told us that if we lost power for more than 48 hours that we needed to come to the hospital-a medical bill that we would be completely responsible for and with a new house and me not working, we weren’t okay with that.  My parents always lose power but get it back quickly, so we figured we would just go to their house in the worst case scenario.

We lost power before the storm actually hit-a couple of massive trees at the beginning of our street fell across the street, blocking entrance and exit to our house, and knocking down a bunch of power lines.  One of the trees literally shredded-they haven’t cleaned it up, so you can still drive by and see it-it’s like someone came by and sheared the side of the tree (sheared, like a sheep's wool, only they left the stubble).  The hubby went out to survey the damage.  The street was impassable and we live on a dead end.  My calls to PSE&G went unanswered-busy signals and hours upon hours of waiting.  We figured we would get power once the storm was over and we bunkered down for the night.

It is important to note that since we didn’t have power, we were completely unaware about what was happening in NYC and the Shore.  We were still in such an emotionally heightened state with Lily, everything seemed worse and more dire for us than it really was.  But at that moment, we were freaked out.

The storm passed overnight and we relied on the emergency oxygen tank and coolers filled with ice packs.  As the temperature dropped throughout the next day, and my calls to PSE&G were answered with regret, we went to our neighbor’s house and sat in front of their fireplace, warming Lily and playing Guess Who.  My parents didn’t have power, and they didn’t know when they were getting it back.  We were hearing rumors that it could take a week for us to get the power restored.  Hotels were booked.  Believe it or not, the most logical next step was to go into Manhattan and stay with my sister and brother-in-law.  Lily’s suitcase was the largest, filled with diapers and formula and, essentially, all of her clothes and anything she could need (bottle warmer, bottle sanitizer, extra wires and bands, etc…).  The hubby drove as I hovered over Lily in her car seat, convinced by shear will power that my physical body could solve any problem she might have-this was her longest car ride, and not in the best circumstances.

At this point you might be asking yourself, "Wait a minute, you said the street was impassible.  How did you get out?"  What a smart reader you are.  It turns out that there is an emergency evacuation route on our dead end street.  A few houses down from us is this white house that doesn't quite fit with the rest of the neighborhood.  If you go down the driveway, it veers behind the house and becomes a bona fide 45 degree-angled escape driveway which connects to the main road. Also, the house is owned by Mary Higgins Clark's daughter...go figure.

Back to the narrative...So 4 adults, 1 preemie, and a loud and heat producing oxygen convertor in a 700 square foot one bedroom NYC apartment, one bathroom, a galley kitchen overflowing with all of Lily’s medical and nutritional needs…it paints an interesting picture.  Warren and my brother-in-law walked to work while my sister and I hung out all day with the baby.  Even my parents and cousin came over for dinner and Halloween.  I ate a lot of candy.  All 700 square feet were strewn with wrappers and baby vomit and Lily wasn’t that happy in her football costume, but she was so cute that we didn’t care about the close quarters-we had a place to live, granted, we used to live in that apartment so we were also a little bit elated-it was so nice to be back in our old neighborhood, to bundle Lily up in layers upon layers, and then cover the carriage so no one could breathe on her as we strolled the aisles in Trader Joe’s and Fairway.  To just go for a walk with my child-something I had yet to do-a major blessing.  And when I got my period and a migraine on the same day, my sister looked after Lily so I could sleep/moan on the couch.

After a few days of imposing on my sister-and really, it didn’t feel like imposing because my sister was so happy to have us and to help take care of Lily and laugh and eat chocolate and make fun of the boys who had to go to work while her school was majorly cancelled and Lily was adorable and happy and eating well and had no issues-my parents got their power back and we opted to move to bigger digs.  The hubby worked from home since we couldn’t get any gas for his car to take him to the bus.

Eventually we got our power back (our most amazing neighbors kept us in the loop the entire time) and we waited a full 24 hours so the house could warm up.  Lily got to spend her first Halloween in New York City, which I’m hoping to use as a pacifier in the future when teenage Lily asks to go to the village Halloween costume parade: “Sorry honey, you’re too young, but you did spend your first Halloween in the city.”

Lily's first Halloween!

That's my sister, dressed as a Giant's fan, holding football-costumed Lily!  I should note, my sister is a real Giant's fan, it's not just a costume for her.  Lily will also be a Giant's fan because, despite her father's love for the Jets, the Giants are actually good.  Go Big Blue!

At Home Medical

This requires some explanation because, unless you also took a preemie home with you, it’s hard to understand that you don’t just take the baby home.  You also take an apnea monitor to make sure that she’s breathing, and an oximeter, to make sure that she’s well oxygenated, and an oxygen converter which takes room air and delivers it through a cannula, and travel oxygen tanks for when you travel to doctor’s appointments (you’re really not allowed to go anywhere else for quite a while), and a large emergency oxygen tank in case the power goes out.

The hospital doesn’t provide the equipment or the training on how to use the equipment-for that, there are companies like At Home Medical.  As I mentioned before, we had a couple of ‘coming home dates’ that never happened.  During one of these almost coming home moments, we scheduled our appointment with At Home Medical (AHM).  About an hour before AHM got there, our doctor informed us that Lily wouldn’t be coming home, so I was an emotional mess.  Then the AHM trainer came, completely oblivious to our situation, and every time we went over the different wires, or how to attach them, or what to do when the alarms went off, I had to swallow down tears.  I could barely stay in the room as my hubby explained that no, we were not taking the baby home.

I went back to the NICU and tried to calm Lily-she wasn’t coming home because her sleep study showed that her acid reflux was so bad that the acid coming up her throat overnight had a ph balance between 2 and 3-that’s somewhere between lemon juice and vinegar on a ph scale.  No wonder she threw up all over her doctor that morning and she wouldn’t stop screaming and she was beating her tiny fists against my chest, her neck wrenching back in agony.  And then the AHM trainer wanted me to practice attaching the equipment to my tiny child.  No thank you.

The company delivered the oxygen converter and other equipment to my parents’ house to await the day we could finally come home.  The AHM trainer told us that the converter was the size of a small box…it was the size of a large, carry-on rolling suitcase and it was loud-we couldn’t sleep in the same room as the heat producing, vibrating, constant sound machine.

Thank goodness we don’t have a dog, because he would’ve been cowering under the bed every time the apnea monitor went off.  And there was no volume button, so we couldn’t lower the evil sound.  Plus, all the alarms were false alarms-when we had an actual emergency, it never went off.  The oximeter went off all the time because it was attached to Lily’s foot, and Lily likes to move her feet.  So anytime the connection wasn’t 100% secured, it went off.  It was a constant world of beeping and screeching and us going crazy because we weren’t sure if it was real or fake.  The monitors had about a 7 or 8 hour battery life for when you needed to go to the doctor, so you had 2 monitors strapped to your shoulder, and a travel oxygen tank, and a small baby in a car seat, and inevitably, the monitor went off while you were driving so, panicked, you had to pull over on the side of the road to find out that your baby was totally fine but you could’ve caused an accident by pulling to the side as quickly and haphazardly as you did.

Some of the stupider comments from AHM:

-When I asked how we were supposed to keep the cannula on Lily’s face (did they provide the same sticky tabs as the hospital did?), they answered: Oh, there’s a slide tab on the back so just tighten it across her face and use her ears.

-Um, won’t she just pull it off? No, they do that. (My child was capable of pulling it off even with the sticky tabs.)

-When asked to hook up the long, 50 foot oxygen tube: Why would she need that, she can’t go anywhere.

-When I explained it was so that I wouldn’t be trapped in one room: So, just leave the baby in the room with the machines and go wherever you need to go.

There were many, many more…but I can’t remember them all.  The company also seemed very confused as to why our cell phone exchanges were different from where we actually lived (mine is NYC, the hubby’s is South Jersey). So when the hubby called to request more supplies, they automatically routed his call to a South Jersey supply station-and then were angry at US, like we had put them out when we explained that the delivery was to New York.

And then the power went out…

Pleading Abject Apologies

With the ability to take Lily outside, reclaiming some semblance of my life and attempting to keep on top of “wifey” duties, I have neglected the blog.  I promise, new entries are on the way and I will continue to strive for better balance.

11 Weeks, Part 3 (B)

So less than a week later and we were back in the hospital, this time in the E.R., while the doctor took Lily’s blood and my mother and hubby tried to calm Lily down-I paced and fidgeted and cried, listening to her screams from an adjoining children’s lounge.  I also realized that I forgot all of the parts for Lily’s bottle, so I ran up to the NICU, explained the situation, and got a bucket full of disposable nipples.  Eventually my husband forced me to lie down in a neighboring room until they figured everything out. I don’t know if it was the stress or the sleep exhaustion or the anxiety or the fact that it was three in the morning, but I actually took a 20 minute nap, and it was amazing-when my hubby woke me up to tell me that Lily was being transferred to the NICU, I felt clear and calm.  Of course we were being readmitted-those were the doctors who knew her the best!  They would figure out what was wrong and then she would come home.  After a good night’s rest, I camped out in the NICU.

Every stop along the way, the triage nurse, the ER pediatrician, the NICU nurses, the NICU neonatologists…even the nursery front desk woman (we got pretty tight after 11 weeks)..everyone asked, “what happened?” and every time I dutifully recounted the normalcy, the smiling, the cough, and then the dark blue color and the pounding on Lily’s back.  But, most importantly, the fact that the monitors didn’t go off.  The NICU understood completely, and I think that it’s something that only a NICU parent could understand.  I wasn’t upset about the “episode”-honestly, I expected multiple episodes, having to do infant CPR, frantic calls to doctors, choking on feeds, etc., etc…I was ready for all of that, because I had the monitors to tell me when I was needed.  I’d spent 11 weeks in the NICU training to be able to do this-the nurses often joked that they’d have to put me on staff.  I wasn’t prepared for my failsafe to fail.

This NICU stay was different-we were given an upfront release date (“we’re only keeping her 2-3 days for observation”), we had a specific cause and reason for the stay, and people were even more accommodating than they had been.  They gave us a semi-private room and let me ignore the NICU schedule hours-I was one of the gang.  It also didn’t hurt that a lot of the nurses thought that Lily was released too soon anyway, so they felt partially responsible for our return.  We also heard from our pediatrician-profuse apologies-apparently, their service failed to deliver ANY messages that night and we were not the only emergency.  They’ve since changed services (if I was them, I would’ve sued).

The bottom line, direct from the chief’s mouth, was that the machines were working-there was no malfunction.  “You just reacted too quickly.  If it went out for 5-10 more seconds, the machines would’ve gone off.  You did the right thing.”  Apparently, I was supermom, reacting before the machines even told me to react.

We left the hospital, again, in a different take-me home outfit, feeling a bit more stable, but with a growing hatred for the monitors attached to our daughter.

Not as happy on this ride home-it was very sunny, so Lily kept her eyes tightly shut until the motion put her to sleep.  I took this picture in the backseat as my husband drove us home.

Medicines and Oxygen and Feedings, Oh My!

Lily came home on a lot of medications-well, I guess not a lot, but there was prevacid, reglan, lasix, aldactone and caffeine, all were given at different times, different amounts, multiple times a day, etc…  Type-A mommy to the rescue.  I can make a mean chart, pre-fill oral syringes, and check off boxes like no one’s business! All medications lined up with feedings, so every three hours Lily ate a bottle and took her drugs.

Because Lily had to stay longer in the NICU due to feeding problems, we were forced to devise an interesting feeding position for her.  Before having a bottle, Lily had to be tightly swaddled and then placed upright in this foam infant chair that they ordinarily use in radiology to prop up and hold babies so they can force-consume barium.  The hospital lent us the chair.  So every three hours we swaddled Lily, checked the chart and administered medication, fed Lily a bottle, and watched her oxygen stats lower, listened to her choke, and then covered our ears as her monitors shrieked with disappointment.

What monitors?  Lily came home on oxygen, but only ¼ liter, which is pretty much the lowest oxygen level you can get.  We were all pretty sure that she didn’t actually need the oxygen, but we followed doctors’ orders. She also came home on 2 monitors-one monitor measured her oxygen saturation and the other measured that she was actually breathing (an apnea monitor).  So every day we reattached her leads and listened to the false alarms.  Normally the lead slipped or came lose or her legs and feet were moving too much for the system to register…but while Lily was eating, there were no false alarms.  When she choked, it registered.  When her lips started to turn purple, it registered.  And it was loud, like those scary emergency alert sirens that go off on our cell phones and scare the bejesus out of us when we’re driving (it’s nice to know about the flash flood warning, but I don’t want to get into a car accident because of it).  So you’re holding your tiny baby, she has three wires dangling from her body, they are constantly falling off because she’s a very active little girl, plus the oxygen tube, you have to swaddle her, and then calmly watch her choke while you feed her.  Yeah, parenthood is a blast!  And don’t forget about the thickened feeds-so preparing a bottle wasn’t the easiest thing in the world. 

We adapted.  Quite frankly, we didn’t know any different, and the hubby and I made jokes about how easy the next one would be since Lily was so labor intensive.  But it was nice to have the monitors-it was like added security because you knew that she was breathing and that everything was alright.  And then the monitors didn’t work.

I was just sitting on the couch looking at Lily-she was sitting in her infant seat on top the coffee table, and smiling and looking at me and then, she coughed.  It was just a little cough, nothing out of the ordinary and certainly nothing to be alarmed by.  And then her lips turned blue, and I don’t mean the inside of a blueberry which is really purple…I mean blue, like a sunburnt smurf.  I picked her up and started whacking her back so hard-I tried to remember everything from infant CPR, so I kept whacking her and waiting for her to cry because if you can cry then you can breathe.  I screamed for my husband but he was upstairs taking a well deserved nap and he clearly couldn’t hear me because he didn’t come running down.  I kept screaming and whacking for what felt like an eternity but was probably really 30 seconds or so, before the hubby came bounding downstairs.  The alarms never went off.  He took Lily and I collapsed into hysterics.  She was fine, clearly she was fine, she was breathing and her color was completely normal, but why the fuck didn’t the alarms go off? This was the reason we had them.  What if this happens in her sleep? I can’t stay awake 24/7 to watch her.  She’s going to choke to death in the middle of the night and it’s going to be my fault because I can’t stay awake.

We called the pediatrician but it was late at night and we got the service-they assured us that someone would get back to us.  Thirty minutes later we called again, and again we were assured.  Another thirty minutes, same drill, same result.  We drove to the Emergency Room-I hunched over Lily in the backseat while my mother drove and my hubby tried to stay calm.

11 Weeks, Part 3 (A)

By the third month our routine was ingrained-we had our schedule down, our nurse was amazing, I had the hospital completely wired (free sandwiches…see me), we were busy saying goodbye to the other NICU mommies we’d grown very fond of…we were in a complete holding pattern, just waiting for the day that we could bring Lily home.  There were a lot of near misses, a lot of proposed release dates that never came to fruition, either because Lily was choking on her food or her reflux was completely out of control.  There were proposed surgeries and procedures and studies and experts…but everyone agreed, “It’s just going to take time for her to grow out of this.”  Have you ever told an extremely type-A person to just sit still and wait? How did that work out for you?  I guarantee whatever reaction you got, it was way worse for Mr. or Ms. Type-A than it was for you as the messenger.

And then the doctor set a date.

I washed everything! Multiple loads a day of clothes and bed sheets and bibs and anything that might touch my daughter.  I completely forgot what sleep was because I was finally allowed to nest and I had to get everything ready-my level of glee was frightening.

Before they release your child from the NICU, they ask you to spend an overnight-the nurses wake you for feeding times and you sleep there to get accustomed to the amount of work your baby will be.  So I packed a bag and go ready for a long night.  They warned me ahead of time, “your kid has no circadian rhythm so you will be up, a lot,” but I wasn’t worried.  How bad could it be?

The first problem was that my daughter’s hospital crib did not fit into the overnight room.  The nurses tried many times, but they couldn’t force metal through metal, so I couldn’t sleep in the NICU. I ended up in the NICU overnight room, and a NICU nurse had to come and wake me every three hours so that I could feed Lily.  I didn’t get to sleep next to my daughter, we were separated by two locked doors and a short hallway, but hey…it was next to the best thing I could get.  The second problem was that Lily had an amazing night that night-she wasn’t up at all. It was like she realized that I was there so she wanted to prove to the nurses that she was a good baby.  This wasn’t a problem for me, but the nurses were worried that I wouldn’t get a realistic understanding of Lily’s behavior.  I made it through the night just fine, and two days later, there we were…taking Lily home.

The hubby packed the car-at this point we had basically moved into the NICU, so we had a lot of stuff.  I prepped all of Lily’s equipment (more on this, later), dressed her in her adorable take me home outfit, and waited for the car.  The hubby drove and I rode in the back with my daughter, who was finally coming home.

It’s nearly impossible to describe just how happy I was to take Lily home.  I don’t know what it feels like to give birth and go home with the baby, so I have no frame of reference, no control group with which to compare.  I just know that everything inside me was singing the most beautiful song in the whole entire world, and my hubby knew all the words. 

I took this photo, 9/28/12-the day Lily came home from the NICU-11 weeks after she was born.

Normal

I have standard responses for most questions about my daughter.

Q: How old is she?

A: She’s 7 months, but she was born early so she’s small.

Q: Is she meeting her milestones?

A: Yes! We are very proud of her-she’s our little rock star.

Q: Where did you get that outfit? It’s adorable.

A: My mother bought it from Gymboree.

Q: Is she going to be normal, you know, like other kids?

A: (blank stare and pause)

…I’m not sure how to answer.  I think, “I don’t know, is your kid normal.  Because she’s/he’s pretty ugly to me, so if that’s normal, then no, my kid isn’t normal.  And what is normal? Is it being able to roll over? Yeah, ‘cause my daughter nailed that.  The smiling, laughing, pulling you in with her luminescent eyes..since day 6! And making consonant sounds…been doing that for months.  Standing up while holding onto something…yeah, I guess she’s just advanced for her age or something.  Affection? I get the sweetest kisses in the whole world.  Grabs my face between two hands and plants slobbered filled goodness all over my face.  Normal? Normal? Yeah, she’s not like normal kids, because she blows your kid out of the water with the courage she has in her left eyebrow and the strength she has in her right big toe.  You can see it in her eyes and her expressions-she is always thinking.  I’d love to see your child even try to think, ‘cause I have yet to witness it.  I hope to god that she is anything but normal, because normal is boring and uneventful and far beneath my daughter who is the bravest person I know.  So yeah, go fuck yourself with your ‘normal’ and enjoy your melba toast life with your normal kids and your normal family and your normal lifestyle.  Because I’ve never been normal and I don’t plan on raising my daughter as such.”

A: (fake smile)…she’s doing very well-we are so proud of her!

I Think My Daughter Hates Me (Or, Teething is a Bitch)

So I haven’t written much this week because my daughter is teething-hard-like a bitch!  Nothing has made an appearance as yet, but her constant screaming and spitting up is pretty indicative that teeth are on their way-you can feel their jaggedness and see their outlines.  I think they’re suffering from what The Simpsons calls 3 Stooges Syndrome-they’re all trying to cram their way through at the same time, so nothing is coming in.  And before you ask…yes, we have tried balms and lotions and children’s Tylenol (don’t give me lip about drugging my child-we use it sparingly and only when she is in true pain) and distraction and soothing baths and pretty much everything except liquor on a rag that she can suck on, but we’re getting close on that one (oldies are goodies).

The only thing keeping me from going over the edge, and trust me when I tell you that I am close, so close to going over the edge, that as soon as the hubby gets home I hand Lily to him and I walk away because at that point if I don’t walk away bad things are going to happen…breathe…the only thing keeping me from going over the edge is remembering that even when she is punching me and pinching me and screaming at me and spitting up all over me…she is not doing this on purpose. Lily is doing all of these things because she is in pain and she doesn’t know why.  She can’t make it go away.  And when it does go away it’s like all the hellish clouds part and she is, once again, my smiling happy baby who coos and laughs and stares at me in wild wonder.  We have full out conversations made of bubbles and animal sounds.  And I can’t help but forget the hours of drudgery and the smell of vomit on my shoulder because all my daughter does is laugh and love me. And really, what’s better than that?

But then the clouds reappear because the numbing lotion has worn off and suddenly her loving stare turns to a furrowed brow and then her mouth opens and she’s screaming-she’s screaming like someone is murdering her and big, huge, drink me Alice in Wonderland sized tears are falling down her face and she’s cramming her fingers into her drool-pocolypse mouth and there’s nothing I can do except pick her up and rock her until the shooting pain goes away.  She is helpless and I am double helpless because there is nothing I can do to help her and I can’t avoid her flying fists of fury.  This is when I am convinced that my daughter must hate me because she seems to be a sadist-like by hurting me she will feel better.

It’s been a dark week, and I’ve definitely had those thoughts that every mommy (at some point or another) has: “I can’t do this, I don’t want to do this, I want to give her back and return to my old life.” If you’ve never had those thoughts, you’re simply not human.  And at the end of the day I do have a wonderful husband who takes Lily out of my hands and lets me regain some semblance of rationality.  I miss my mother-she went back to L.A. this week and she’s the best daytime break that I get.  I really admire single moms because there is no way that I could do this alone-I do have a great support system of relatives and friends-but that doesn’t mean that, sometimes, I’m convinced that Lily hates me and the feeling is mutual and all I need to do is hop in my car and drive into the city and rewind a couple of years because my sister is living in the old apartment, so I know how to get in, and I can just pick up like it’s 2008 and I’m carefree and much thinner-plus I can go to work and have adult conversations.

And then Lily smiles…

Great Suck, Terrible Swallow

So, you might be asking yourself, “why was Lily still in the NICU if her breathing was taken care of and she was healthy”?  Well, Lily had two issues that needed time to be resolved. The first issue was the central apnea that I mentioned previously-basically, her body would just forget to take a breath.  Even full term babies do this, and then they take a few catch up breaths.  It’s actually pretty normal, but for preemies, you need to stimulate them to take the catch up breaths.  The apnea gets worse when the baby is too taxed.  And for Lily, drinking from a bottle was the most taxing part of being in the NICU.  You wouldn’t know it now, considering she just drank an entire bottle and ate an entire package of string beans in 30 minutes, but eating was Lily’s biggest hurdle.  She really couldn’t coordinate the breathe, suck, swallow motion-again, this is something that full term babies can also have a problem with, but Lily was never going to graduate from the NICU if she couldn’t drink a bottle without it throwing her into an apnea fit.  My daughter would hold her breath, suck in too much fluid, and then be too overwhelmed by how much formula was in her mouth, so she’d choke.  She had "a great suck, but a terrible swallow” (and no, the hilarity of that diagnosis was not lost on us, even in our misery-it reminded me of this one time that my dentist, who is older than my parents and who I’ve been seeing since middle school, tried to help me with my sensitive gums, and said “you know, just put something in there and move it around, suck on it a little”-he realized how awful it sounded, but I was too busy laughing hysterically to hear his multitude of apologies).

Lily had to stay on her feeding tube far longer than expected because of her bottle problems, and she had to stay on oxygen longer than expected because of the feeding problems-they couldn’t wean her off of anything until she stopped choking.

Coupled with the choking was another serious problem that also triggered the central apnea: acid reflux.  You might be thinking, “silly baby, I have acid reflux and I just take xantac.”  Acid reflux is different with babies.  And yes, yet another thing that happens with full term babies, but with preemies, they feel the acid come up, it burns, and they stop breathing! Woo hoo for more apnea.  The solution is medication, first xantac and then prevacid (which did work, eventually).  The solution is sleep position, notably, sleeping on your front because then the acid doesn’t creep up.  The sleeping on your front issue became an even bigger dilemma once we were released because the current trend in pediatrics is “back to sleep”-all babies MUST sleep on their backs because it seriously reduces the risk of SIDS. Well, I had a kid with terrible reflux who was sleep trained on her belly, so she stayed on her belly!  So once the reflux was under control, Lily could come home.

But, the eating wasn’t under control. The choking is what kept Lily from coming home.  Even with thickened feeds, being over 6 pounds (they let you out of the NICU at 4 and a half pounds for good behavior), the lowest possible setting for oxygen, and being super duper cute, Lily had to get the choking under control-great suck, terrible swallow.  I can't wait to joke with her future husband about this one!