Thursday, August 29, 2013

Decade



Dear Big Sis,

You're a decade old today.  I've spent a quarter of my life with you center stage, though it feels like a greater proportion and your influence on me is immeasurable.

Today is your birthday, and we all woke up weary from your baby sister's and my late arrival last night and all the reacquainting and excited sharing we did.  Earlier in the week when I called and asked how you wanted to spend your birthday you magnanimously deferred to Tootsie.  Whatever works for us to do with her, Mom, you said, and my heart swelled.

And so today has been mellow, with each of us taking turns expelling some emotions and feeling a little overwhelmed.

We ate breakfast at one of your favorite spots; you fed your baby sister; we talked with some old friends/visitors; you wrote in your new diary.

I'm respecting your privacy--your need to be you and keep parts of your self sacred.  But I love that you are so open and honest and expressive with us.

You are an avid reader, and are so excited about what you read, you want us to plunge into your favorites too.  Most recently it was Dahl's Mathilda and Palacios' Wonder.  I was hesitant to let you delve into The Hunger Games series, but as you explained yesterday, "I'm not worried about a reaping,  Mom; I'm more worried about Syria."

Like many tweens, you're negotiating friendships and who you are and want to be.  Some of your closest confidantes are moving on to middle school, so 5th grade will mean nurturing new friends and evolving old friendships.

We love your creative spirit:  in your bedroom is a drawer you've fashioned into a miniature house with rooms and furniture; you draw fairies and mermaids; you love to cook and try new foods (including frog's legs on Bastille Day this year!).

We adore you, our bird-boned, thoughtful, analytical, sporty, artistic, kind, and careful first-born daughter.  You've been trying especially hard to be an understanding and patient Big Sis.  There's not much you don't put effort into.

Love,

Mom and Dad and your adoring fans.


Tuesday, August 27, 2013

1 Month

Hello friends!

I'm one month old today!  And my "corrected" age is 36 weeks 4 days.


I'm hanging out at my aunt and uncle's in Cambridge with their five-month-old puppy.  Life is good.

It's going to be even better soon, when I'm home with my sisters and Daddy!




Sunday, August 25, 2013

Fond Farewell

Dear Friends,

Today was my first day in sunlight!  Because I woke up this morning, and check out my Goal for the Day:


Guess what, I met my goal (sorta--I'm going to hang out in Boston for a while until I head to my Main Crib). But first, I had to accomplish a few things.


Like meet my Mammom, who flew out here from San Diego to get acquainted with me and help bring me home.  I am her tenth grandchild!  She's a complete pro at being a grandmother, and pretty much a celebrity in my family.  


And I had to pass a Car Seat Test.  It turns out that the angle of car seats can make it hard for some small people like me to breathe, so we have to show that we are safe sitting in our seats for an extended period of time before we leave the NICU.  I took a nice long nap in my seat yesterday.  No big deal.  Oh, and check out my glow foot--is that awesome or what?  Definitely the coolest of my monitor probes.  

 

My nurse gave me a warm bath this morning.  After wondering initially what the heck was going on, and then thinking, hey, this kind of reminds me of a warm dark time inside...I relaxed and enjoyed the rubdown.  Of course, right after that I made a blowout diaper and my mom had to change my outfit, haha.  

Meanwhile Mom had to pack up all our stuff, watch a video on infant CPR, learn how to make my fortified bottles, and sign some paperwork.


The hardest part was I had so many loving people to say goodbye to.  I enjoyed some final snuggles with my nurses.  So many nurses came by yesterday and had long conversations with my mom.  She is going to miss all the friends she made here.  


After Mom fed me one more time, nurse Ellen came in to take off my leads to the monitor.  No more lines, no more beeping.  I was tucked into my carseat and snapped into the stroller, and we rolled out of room 1080.  We had a final goodbye at our neighbor's room--she's a preemie too, and her mom and mine made friends upstairs while they were waiting.  I'm sending all my strength and growth her way, because she's just begun her journey in the NICU, but she's going to do great.  My mom and hers cried and hugged and made the nurses cry too.  They gave each other a ton of support.  Who doesn't need that in this life?

And then we were leaving Blake 10 and the hospital and moving on.  My mom looked a little wide eyed, but I mostly just slept through the journey out and the car ride to my aunt and uncle's apartment at Harvard.  I'm ready for the next thing.  The Big Wide World and I have lots to do, and I've been working all month long to get started. 

Friends, thank you for sticking with us on this adventure, and cheering us on with your notes and gifts and kindnesses.  We'll need your love and understanding when we get home too.  I can't wait to meet all of you, but I have to hang out in Boston for a bit and then bond with my dad and sisters first.  Mom might be a little distracted from the blog because first, she's going to watch me breathe All The Time, and this week we have to check in with doctors to make sure I'm doing okay without my friends at Mass General Hospital, and then ride on the airplane, and get used to being home...  She's happy and relieved but a little tired, too.  She says six weeks feels a little like it was only a few days, but then, it's almost September and the last time you saw her it was July.  

Needless to say, we will see you SOON, buddies!  

XOXO, 

Tootsie




Saturday, August 24, 2013

Wonder



Today may be one of the most lovely of days.  The air is warm but not humid; there's a breeze and a slant of light that suggests the threshold of summer and fall.  The taste of the air and the energy of Bostonians out enjoying the amazing weather reminded me that East Coasters have fervor for beautiful days, seizing the opportunity to be outside and doing it up right, spreading blankets in the grass, crowding outdoor eateries, boating, swimming, running, playing.  Smiling.

I left the air-conditioned hospital after feeding Tootsie to run some errands (how normal!), and found my face greeted by warm sun and friendly people.  I had an irresistible urge to jog or skip, and instead, celebrated my serendipitously glorious day with a soy chocolate fudge ice cream cone from J.P. Licks (the most awesome texture and flavor!  I heard a passerby tell her friend as she watched me lick my cone, "Quiero uno!").

I headed down Charles Street to the Public Gardens, where a friend of my former student who attends Berklee College of Music does a poetry exchange on the bridge--he'll write you a poem and you write one back (amid the other "buskers," including balloon men, musicians, jugglers, etc.).  Alas, he wasn't there, though I was writing poetry in my head as I walked and swooned over my soy ice cream.  I admired the swan boats, the geese, the families, the flowers, the few trees adopting fall colors, and the joy of my current life--healthy children and husband at home, beautiful growing baby here, almost ready to reunite with her family.

I picked up some photos I ordered from the drugstore near the hospital, and traveled the familiar route back to the main entrance, pausing to admire some fluffy-plump birds splashing and frolicking in a filthy puddle in the street.  They seemed to feel as I did about the day and I caught the eye of a woman headed in the other direction and we grinned at each other.

Back in the lounge kitchen adjacent to the NICU I ran into the gentleman who restocks the drinks and delivers our meals--my friend the "Reader with a Capital R."  I told him how wonderful it was outside and asked him about his day.  Did he have any time to read?  Too busy, he replied.  I have a book recommendation for you, I shared.  It's a book I bought for Big Sis, among a stack of young adult titles recommended by someone, somewhere (need to figure that out again!), which she read while she was here and insisted that my sister and her husband read as well. They in turn told me I must read it, too.  And now I want the world to pick it up and discuss.  It was a perfect read for me with a baby in the NICU.

It's called Wonder, I told my hospital friend.  "I love the title already," he responded, "Wonder is something we have as children.  Something I grew up with in Haiti.  But we lose it as adults.  Machines get between us and nature."  (I'm thinking now of one of my favorite poems, Wordsworth's "The World is Too Much with Us":  Getting and spending, we lay waste our powers/Little in nature we see that is ours).

It's a beautiful book, I told him.  It will make you happy.

Thank you, Big Sis, for the strong endorsement.  Thank you, Boston, for this afternoon.  Thank you, my body, for healing so that I want to skip and run and jump today.

My mother will be here in only a few hours.  I CANNOT WAIT for her and Tootsie to gaze at each other.  With wonder.

Friday, August 23, 2013

List: Tootsie's Gifts

After my sister traveled from the Pacific Northwest to visit me and our baby, I wrote her to say how much I loved all our conversations while she was here.  She wrote back, "Me too.  Grateful for the one-on-one time.  It's rare...a sweet gift from Tootsie."

I had the epiphany then that my sister recognized something important about this six-week experience I've had with my new daughter:  it has strengthened relationships, given me time with people who are very very important to me, given my daughters time with people who are important to us, and facilitated some chance encounters with local friends with whom I wouldn't have otherwise caught up.

A dear friend and colleague wrote me an email suggesting that our journey (as chronicled here) may have influenced others as well.  "Pound for pound," he wrote, "Tootsie is having quite an impact."

We haven't endured a tragedy; I would not characterize our baby as a "miracle" unless we all are miracles in some form; the magic is in the reaching out and creating community, which she has encouraged me to do.

Tootsie has offered other gifts as well:

1.  Boston:  I thought, before we arrived in July, that I was more familiar with Boston.  It turns out that attending the Harvard-Yale game in 1990 (I mostly remember a discotheque called "Spaghetti," the tailgate area at the stadium, and the rocket MIT pranksters launched from a field goal post during the third quarter) and running the marathon in 1996 did not afford me many memories of the city itself.  My recent time here has, though, and I've joked that the little girl who brought us to Boston is still the only family member who hasn't gotten out and about in the city yet.  Massachusetts General Hospital is conveniently located within walking distance of just about everything.  While visitors were here, we used time between every-three-hour feedings to make field trips to the Inner Harbor, North End, Faneuil Hall and Quincy Market, the Esplanade, downtown, Long Wharf, Beacon Hill, and Back Bay.  The other day I even gave directions to a tourist on the street.  I loved the city from the start, with its parks, family-friendliness, safety, incredible infrastructure, history, and warm people.  We will return here someday as a family to visit Tootsie's birthplace and all it has to offer.

2.  Empathy:  When Big Sis had surgery for kidney reflux six years ago, I wrote on this blog that one generally comes away from hospital visits feeling grateful and fortunate. This experience is no different.  Though we endured a scary time early on when Tootsie's meningitis was raging, she began showing remarkable signs of recovery and strength very soon, and continued her upward trajectory fairly consistently.  We are surrounded in the NICU by more sober stories--babies born earlier and with more complications.  I met two mothers during dinner in the lounge last night, both of whom gave birth to babies under one-and-a-half pounds at birth.  Both babies have serious lung complications and tracheotomies.  Both parents have already endured months in the NICU.  Both expressed empathy for me when I explained that we were from California.  There's no competition among difficult experiences, only empathy and understanding.  There's struggle, hardship, endurance, and hope.  We all feel it, and living with Tootsie here on the NICU has deepened my sense of empathy for all of us on our journeys, wherever we are.

3.  Patience:  While I've felt anxiety and stress and the desire to get home, I've practiced patience in new ways during the past six weeks.  My initial hospital bedrest foisted patience upon me:  there was nothing to do but wait and accept my circumstances.  And because I was no longer in control, I was able to do so.  No amount of yearning to be home with my children and husband made me want to accelerate our baby's exit from the NICU against better judgment.  She's been the captain of our ship, and I've been the patient first mate.  I feel a remarkable inner calm and lack of urgency now.  We will get home.  The next chapters of our life will unfold.  I am not pushing.

4.  My Littlest Sister:  After living on the east coast for seven years after college and teaching abroad in Kenya for a year, I made the decision to return to California and my family.  My youngest brother and sister were still in middle and high school--I'd left home when they were eight and five.  I have always been glad I made the choice to come home; I credit that decision for my close relationships with those two siblings (now my brother's wife is even my colleague!).  The plan for this trip was that the girls and I would spend time with my sister and her husband before and after a week in Maine.  Instead, my sister spent nights with me in the hospital and was by my side at Tootsie's birth, and I've shared weeks of meals and conversations with her and her husband.  I'm able to more closely admire the life they've built together, their marriage, and their generosity.  And this week I'm here for my sister as she copes with unexpected bad news.  I wouldn't have been otherwise.

5.  Letting Go of Control:  I'm a planner and organizer (though my home and desk don't suggest so) and like to have a firm sense of what's coming.  2013 has been a year of unexpected events:  pregnancy (though wished for, not counted upon), a new house, and a new job.  I must be honest and admit that I've wondered if I could manage it all.  I planned to open the school year with enthusiasm and a little trepidation.  I hoped I'd resume parenting an infant with relative ease.  But I wasn't sure.  To cope with some anxiety and insecurity, I began carefully planning, mapping out the six weeks I'd be back to work in August and September pre-baby with to-do lists and calendars.  And then Tootsie disrupted my scheme--and my worries about "the other stuff."  I wasn't at work in July and August to hire new staff, to set things up and train folks.  I'm not there now to set tone, model, and represent our high school as its leader.  Because I'm not in control, I can only worry so much.  Instead, I focus on the tasks I can actually accomplish from afar, the ways I can help, the reassurances I can give, the questions I can ask on behalf of others, and the decisions I can make.  I feel trust in the team.  I feel confidence in our community.  I know that if I were there--if this hadn't happened--I'd be running on a few more cylinders, spinning out a little, perhaps.  And maybe that spinning is why our top landed here, idle for the moment.  I suspect returning to my job later this fall will be easier with my new perspective and acceptance of the unexpected.  We will see.  But I am grateful to Tootsie for helping me let go and be right where I am.

6.  Time:  Between the waiting upstairs and the pockets of time between infant care and long snuggles now, I've had time to read books, write, and think.  No house to clean, meals to prepare, others to care for except sweet baby girl.  Time, even alone with one's thoughts, but particularly with an infant, is a luxury indeed.

7.  Bonding:  I fell in love with our baby the moment she raised her arm high in birth and made the reassuring squawks announcing her debut.  I felt I could pick her out of a lineup after a few hours.  I believe I know her and her little personality--as tenderly developed as it is thus far--intimately well.  She takes long to awaken, grunting, stretching, wagging her head back and forth, sometimes for half an hour.  She rarely cries, but when she does, it's a sweet "ewww WAH" followed by a longer "WAAAAAH."  When she starts to breastfeed, she often stops to take in the view and contemplate her surroundings and task.  She stops everything when I sing to her, save for furious chomping on her pacifier.  She is "stingy with her burps," according to the nurses, but noisy when one is on its way.  She's alert and watchful and remarkably calm.  She can raise her torso by planting her feet on her bed and pushing upward.  She's learning to put her fingers to her mouth.  She makes the "ooh" face for which her older sister was known.  We've had precious bonding time--almost as if we were relegated to a cave together.  And because I don't live in the Boston area, I've had nowhere else to be and a laser focus on nurturing Tootsie's growth here in our NICU "home."  I suspect we'll long reap the benefits of this unique time together.

8.  Gratitude:  I've always preferred giving to getting, more comfortable offering others assistance than receiving it.  But circumstances sometimes dictate being open to the love and warmth of others without guilt, obligation, or anything but deep gratitude.  The doctors, nurses, therapists, and support staff have offered us such personalized, tender care.  I have been overwhelmed by the unwavering love and generosity of my family members, willing to fly far to be with me and our daughters.  Anything I've needed has appeared, or been offered or procured without question.  Friends and colleagues have sent messages of love and encouragement and thoughtful gifts, and cared for our daughters.  I've been particularly moved by those who've shared their stories of childbearing and parenting with me, memories and anecdotes unearthed through our own storytelling.  We feel so incredibly blessed, nestled in a nurturing cradle of community.

9.  Tootsie, Herself:  She's a caboose of a kiddo, with siblings seven and ten years older than she, but I can feel already the joy she's bringing into our lives.  I look forward to discovering all the other ways she will influence and enrich us.

Thank you for the gift of your presence, sweet baby girl.



Thursday, August 22, 2013

(almost) Untethered!

Today:

NG tube, out!

PICC line, out!

Peripheral IV, out!

MRI, normal!

Tootsie has one foot out the door.

Now to wean ourselves off the monitor!

This afternoon our baby had some snuggle time with the auntie who was there when she took her first breath, and who has supported me through broken waters and on.  We love you.


Look, Ma! No Tube!


Last night we overfed Tootsie and sent her off to her MRI in a proper food coma, and she lay completely still like a champ.  We should get results tonight, and removal of the PICC line should follow.

She came back to our room and continued her breast-and-bottle-only regimen, not sleeping through any feeds, such that her nurse last night pulled the NG tube.  No more passive feeds; we are working for meals from now on (both of us!).  She's gaining weight so steadily that the docs have recommended stepping back the calories we are supplementing in her bottle.  This is good news for plans to ultimately rely on breastmilk only.  

Yesterday I heard from the friend I made upstairs in antepartum, who was nearing 30 weeks after checking in at 26 with ruptured membranes.  I had visited her the night before and all was well, but as can happen (as we know), the picture changed in less than 12 hours as she experienced bleeding and they suspected placental abruption.  She had her c-section in the afternoon and gave birth to a promisingly strong 3lb.-and-change baby girl who squeaked at birth and is now a neighbor in the NICU.  I'm hoping to hug and congratulate my friend today.  

I was able to join our high school staff meeting yesterday via Skype, and the energy, humor, and excitement in the room full of my friends/colleagues gave me a huge boost.  I am so fortunate to work with incredible people and professionals.

This morning students have their first day at our high school, one of my favorite days of the year--the shy excitement, the new outfits, students clutching schedules, wide eyes trying to identify buildings, new seniors claiming territories, awkward silences in classrooms.  As is customary, seniors will file into the opening pep rally to AC/DC's "Back in Black," appropriately attired.  Just as my friends and I did, 25 years ago.  

I will miss my first day as principal and the opportunity to address the school; I've called in sick.  But my heart can be in more than one place at a time, I've learned.  Happy First Day, wonderful school!

Wednesday, August 21, 2013

Day 21

Yesterday we took the isolette out of the room and moved Tootsie to the same kind of crib babies stay in on the regular post-partum ward:


Our room seems suddenly bigger, and so does she.

The MRI didn't happen yesterday; more emergent cases were the priority.  But we will look forward to crossing that threshold today, and also administering her last round of antibiotics tonight.  When her PICC line is removed, hopefully in the next day or two, she's eligible for a real bath.  And then we start practicing to bring her home.

Over the next week or so I will need to grapple with bringing home my still-wee baby without the comfort of monitors and support of nurses around the clock.  I will have to trust our instincts in caring for her, and rely on our local pediatrician for reassurance that she is on the right track.

It's another form of training wheels coming off, and us, running along beside.

Tuesday, August 20, 2013

Three Weeks

Thank you for my gifts, sweet friends--I'm still a Cali Girl!
Today is a big day for our girl.  She is three weeks old--and believe it or not, time has sort of flown in that respect here in our little manse in the NICU!  Funny to think she is still not "due" yet, though, for another month.

Nurses will insert another peripheral IV for her today in preparation for her MRI.  She needs it for the contrast aspect of the procedure.  

Last night our proactive nurse began implementing a bottle/breastfeed plan which went well.  Tootsie took three bottles, breastfed once (soon I will be limited to only a few times a day so she gets all her calories), and slept through only one feed.  She sucks her bottles down in no time whatsoever, despite the slow-flow nipple; there's no doubt she has a healthy appetite.  We will keep moving her forward and hopefully away from her NG tube.  Things look promising.  

Tomorrow is Day 21 of her antibiotics, which means her PICC line will come out as soon as we're confident she won't need it (pending lab results).  And then she will have fewer lines--fewer ties binding her, shall we say, to the NICU.  

I've had some sweet visits in the past few days.  A couple whose children were my students, and who share time between Boston and the west coast, came to say hello, and it was wonderful to see familiar faces and catch up.  Yesterday a former student who attends Berklee School of Music came to the hospital to meet our baby and then we went for a long walk through the Public Gardens and down Newbury and Commonwealth Streets (what a gorgeous city this is).  I was buoyed by the excitement of my college-age friend, her exuberance for the life she's living and generosity of time with me.  

And also, we had ice cream at J.P. Licks.  White coffee chocolate chunk...yum.  

Monday, August 19, 2013

Strength

Here I am in Boston, a city with which we all felt some affinity after the marathon bombings, as its citizens bonded together under the declaration "Boston Strong" and we all felt buoyed by their optimism, fortitude, and generosity to one another.  Boston Strong tee shirts are ubiquitous here among residents--I see several on my daily meanderings.

And in the situation and setting I am in, there are many references to and I think a lot about strength.

I mentioned to my sister yesterday that I feel this dichotomy inside.  On the one hand, I am someone others consider strong enough to lead a high school.  On the other hand, this experience with a sick baby and living far away from family has exposed my greatest vulnerability.  I've been weepy, unsure, insecure, worried, anxious, and fearful, even when all signs point in positive directions.  Am I these two  personae--both capable and fragile?

My sister lives with a son who is in a consistently delicate medical state with his central line.  She and her husband count on semi-monthly emergency room visits when my nephew is ill or there are problems with the line or tube sites.  We are all in awe of her pragmatism and positivity.  On our walk to the harbor yesterday, though, she described having some of the very same irrational thoughts (overwhelming fear of mortality and worries about her children swimming, riding in cars, getting hurt in general) I have found invade my mind and threaten to affect my general outlook.

I go through the mental exercise of counting my blessings and imagining and appreciating those who are experiencing different, more life-threatening hardships.  I wonder what it means to be "strong."  I wonder about that oft-heard saying that God gives you what you can handle--a suggestion that some of us are built for--and then somehow deserving--of tougher times?  I don't subscribe to that philosophy.  Instead, I search for the learning in the journey (and as my sister eloquently articulated it as she described a particularly difficult time in their family, "we looked for the message").  What do I know about myself now?  What do I better understand about the people around me, about what others are experiencing and what others give and say and use to cope?  What do I know about life that I didn't see or imagine before?

Tootsie is tough, I've felt, since her birth when she emerged squawking and alert, to her relatively quick recovery from her serious infection.  But the babies here who succumb, are they less strong, less determined?  Big Sis is still struggling to understand why our cat couldn't recover from her injuries to live, and in turn I struggle to explain why she would leave us.  Why it might appear our kitty couldn't fight anymore.  I want my daughter to see the strength in knowing that it's time.  There's no rubric for strength applicable to all scenarios which doesn't suggest a kind of comparison, a hierarchy of fortitude.

At home our niece, my daughters' cousin, is caring for her mother, Husband's sister, as she suffers from brain cancer.  Our niece has lost her father already, and in her tender twenties and as an only child, she prepares to say goodbye to her mother, too.  This beloved and admirable niece is the same one who managed Husband's mother's hospice care two Christmases ago.  She is a hero in our family.  And not only for what she's endured--for who she is.

I think of her as having indomitable strength, but with that characterization comes the subtle pressure that suggests she shouldn't waver from her resolute and realistic care and decision-making on behalf of her mother.  That she can't break down and feel helpless and wonder why why why.  I'm thinking differently about strength, now.  I'm thinking it's the staying of the course, the resigned travel down the path which includes breakdowns and meltdowns and steps backward and forward.  The genuine acknowledgement that there are surges of hope and depths of despair.  We are all strong for facing our challenges, then.

I want to share part of our niece's story with you, in her own words.

What do you know about strength, from yourself and others?  When have you faced your most vulnerable self?


Sunday, August 18, 2013

Sugar and Spice

My sister from Oregon is here, and brought bows and flowers and outfits to dress up our little girl:

There's no denying she's cute.
She was also present to see Tootsie top the scales at 5lbs. 1oz. last night!

My sister has experienced a range of medical issues and challenges with her three sons, including a NICU stay with her eldest, and motility issues with both her first and second sons (which I've written about here).  Right now there's a kinship between our cousin on a feeding tube and our own baby with her NG tube, too.  We've bonded as I listen to my sister recall her own NICU saga and provide updates on the status of my nephews' health.  My sisters--one a nurse, the other with so much experience in the hospital--have been ideal companions through this journey.  

We're trying to figure out how much breastmilk Tootsie is getting during a feeding, so at some point during the day we weigh her before and after a feed.  It's an inexact measurement because she has lines dangling, but last night it looked like she took 26 milliliters.  The nurse subtracted that much milk (the most we've ever measured) from her fortified tube feed.  Well, about an hour later, she started squawking.  She was still hungry.  She is interacting more and more with regard to her feeding, which is a great sign.  We'll expect her to be more in charge of when she feeds when she goes home.  The current plan, to help support her growth and weight gain, is for us to feed her by (supplemented) bottle of breastmilk most times, and feed by breast alone three times a day or so.  As she shows continual weight gain, we'll add more breastfeeding.  

My sister and I wandered to Boston's North End for dinner last night, the Italian section of town.  It was hopping on a Saturday night, with a feast celebration running down several blocks and lines for every restaurant.  We were fortunate to secure a table quickly in a great trattoria and had a lovely dinner. We returned to find our night nurse is a North End resident.  

My sister leaves today, and my Cambridge sister returns tomorrow.  I'm hoping my next family visitor is my mother, who will come help us transition out of the NICU, onto an airplane, and home to our family.  Wednesday is Day 21 of the antibiotics regimen, so we're hopeful we will know more then...



Saturday, August 17, 2013

TGIF: 35 Weeks and 4lbs. 14oz

Tootsie news yesterday by statistics:  It's Friday, so she's 35 weeks.  And she is on the ounce-a-day gain train, now only two ounces shy of a nice round five pounds!  She passed her hearing test (which I anticipated, because she reacts so strongly when I sing to her.  Ahem.  No comments, please) and I got to wash her hair.

Her biggest obstacle to surmount before she is sprung from the NICU is taking all her feedings by mouth.  She needs to be alert at each three-hour feeding first, and she still sleeps through several a day (which means they hook up her milk by tube).

I've found myself having to avoid reading too much news, as there is too much depressing coverage, with crashing planes, kidnappings, protesters dead, babies abandoned.  As a friend wrote on Facebook, "I wish I could unread that Hannah Anderson article..."

We are also at a place in the NICU where Tootsie is stable and basically what they call a "Feeder/Grower."  Yet we are surrounded by very sick babies, and I pass by their rooms with hope and reverence, mindful of where their parents are on their journeys with their newborns.

My family--determined to have someone here to support me at all times--provides uplift and distractions and opportunities for fresh air.  And the internet comes through with some sources of inspiration.

Here's a video about a teacher, dad, and human being determined to enrich others' lives:


And here's a mother panda reunited with her baby (I can so relate to this one!)


Note, however:  syrup or honey or whatever they used to distract Mom while they sneaked her baby away wouldn't work on me...but the promise of sleep, maybe, would...

Friday, August 16, 2013

Before and After

The day before yesterday my sister-in-law and I took the T to Cambridge so I could show her Harvard and the area where my sister and her husband live.  The only Curious George store in the world (apparently) is there, so we had to hit that up, too.

While I was there I felt impressed with how much the girls and I and aunt and uncle saw and did in that weekend before my water broke early Monday morning.  We took the ferry to Spectacle Island to fly kites and eat blackberries, we had a sunset swim at Walden Pond, we made posters at the printing press, we grilled in the Adams House courtyard, we walked my sister's puppy, we jogged along the Charles, we visited a Bastille Day celebration, and we ate and shopped a little.

I had an unexpected emotional reaction to being back in Cambridge, though.  I realized that I associated it with the Before, the time when I was pregnant, when my girls were here, when the only worry on my mind was the drive to Maine on Monday morning (would I get lost, etc.). That was when my world was going according to plan:  I was having the vacation I'd promised my girls, and giving them the undivided attention they'd asked me for and I'd spent many months determined to offer.

I was looking at Cambridge now through a different lens, without the girls, with a still sore tummy and an eye on my watch for when it was time to return to my baby.  My heart felt a little heavy, and Cambridge felt less lively and invigorating.

Meanwhile, I associate the areas around the hospital with my new reality.  This is the Tootsie side of Boston.

I'm wondering now what it will be like to go home, to the house that wasn't expecting a baby yet, a house that's been empty a lot this summer, and which is missing the cat who was there when we left.

I imagine that our baby girl, our third daughter, our fifth family member, and tenth grandchild in the family, will fill up space with her little probing eyes, sweet cries, and baby smell.

I'm missing Husband and daughters today, but so relieved they'll be together tomorrow.


Thursday, August 15, 2013

Lack of Organizational Skills

Premature babies are often referred to as "disorganized" by nurses, doctors, occupational and physical therapists, lactation consultants, and their own parents when they're eight years old and up (I can just see the excuse from Tootsie now:  "But Mom, I've been disorganized since birth!  I was born this way!").

What the professionals are referring to is the babies' tendency to flail arms and legs around, crane neck from side to side, and generally exhibit entropy from their core.  Unlike full-term babies, they don't have the motor skills and neuro pathways developed enough to keep things centered and calm.  If you watch Tootsie, she's still trying to figure out her hands as they're related to her mouth (and her arms!).

It all makes sense if you consider that at almost 35 weeks gestation, our baby girl should still be in the womb for a month more, curled in a ball, organized.  Almost everything they do here in the NICU is meant to replicate that experience (lots of sleep, quiet, swaddling) so that her brain and body can continue to develop, as was her only job inside of me.  Now, though, she is charged with learning to eat from the breast and bottle, too, and fatten herself up so she can regulate her own temperature outside the consistently warm environment in utero.  It's quite a transition, and she has a lot of work to do that would normally be accomplished by amniotic fluid and the umbilical cord.

Since she can't only focus on the skills that will bring her home--feeding and fattening--and since brain development is so crucial too, her Care Team restricts the number of time she breastfeeds (and bottle feeds) for now, ensuring that she not only gets enough extra calories through her tube feeds, but that she also has plenty of opportunities to sleep.  The process of getting her home is slow and steady, and the discharge date on her board still reads "TBD" as I suspect it will for some time.

Yesterday's leap was, after recording weight gain to 4lbs. 12 oz., lifting the pop top of her isolette and having her sleep in room-temperature air.  Last night's nurse bundled her up and watched her temp closely, and so far so good.  She may even graduate to a big-girl crib soon!

In the meantime, we're keeping her organized:  Legs tucked, arms and elbows oriented to her midline.

It will be interesting to see what her backpack looks like in middle school...

Organized baby:  swaddled, tucked in, binky deployed, and doll from the USVI providing support

Wednesday, August 14, 2013

2 Weeks

Our baby girl is two weeks old yesterday.  It's amazing how time has both passed quickly and crept along.   While she is two weeks old, she has not yet reached full-term status, or her due date, which is interesting to remember at times, especially as she grows bigger and reassuringly sturdier.  She is also officially two-thirds through her 21-day course of antibiotics today, after which she is free to show us when she's ready to come home.



Our big girls are back in San Diego, reunited with grandparents, our dog, aunties and uncles, and new baby cousin.  They're doing well back in the complex of nests that constitutes home.  Meanwhile, Husband is in his element coaching an Olympic development clinic (so gratifying to hear the excitement in his voice) in Texas; he will join the girls on Saturday and some semblance of normalcy should return for them.

My sister-in-law who delivered the girls back to Boston has remained to keep me company, thankfully.  She is enjoying her first solo trip/vacation and had some time to explore Boston on her own yesterday.  It has been great to have time to catch up and talk.  When she leaves on Friday my sister arrives.  I am just so very grateful for all the family members and friends who've rallied to support us.

Tootsie was sleepy yesterday after four feedings off her tube in a row, and breastfeeding wasn't as successful as it had been previously either.  None of this was completely unexpected, as there are often several steps forward and then a few in place. She is up to 4lbs. 11oz., though, inching ever closer to the important 5lb. mark.  She and I were able to spend quite a bit of time napping yesterday with her snuggled on my chest.

In the afternoon I had a surprise visitor from home, the mother of several students from school and a dear friend who happened to be here on business.  She reassured me that all was well back home and at school (which has been very evident), and we had a sweet chat while Tootsie slumbered.

Sister-in-law and I capped yesterday evening with dinner and beer at the Cheers bar near the Boston Public gardens.  It was a perfect upbeat setting.  I was able to catch up on some sleep last night and this morning, and am looking forward to doing some laundry today (I've been rotating the same three or four tops and bottoms and sweaters--the nurses might not recognize me if I change my clothes!).

Have a wonderful day, world.


Tuesday, August 13, 2013

Genie in a Bottle

Yesterday we had some highs and lows.

Lows:

1.  Waking up weepy about saying goodbye to my girls at the end of the day.
2.  Planning to embark on the renowned/infamous Boston Duck Tour, and then walking my family the wrong way down the Esplanade--a long walk.
3.  Discovering that Tootsie's PICC line was not working or occluded.  Installing a new peripheral IV in Tootsie's tiny veins.  Hoping PICC line gets fixed.
4.  Feeling exhausted today.
5.  Tootsie sleeping through her sisters' two afternoon visits, and the Big Sis bottle-feeding plan having to be ditched.
6.  Saying goodbye to my girls.

Highs:

1.  Being reassured by helpful and understanding nurses throughout the day.
2.  Finding an awesome playground on the Esplanade where the girls played for an hour, and then treating them to their first frappuccinos.
3.  Finding that the PICC line began working again on its own.  Potential disaster averted.
4.  Spending some time in the hotel room in the afternoon resting and snuggling the girls.
5.  Tootsie being ready for her first bottle at the 6:00 feed, and all of us getting to watch her nurse feed her, as she gulped it down!
6.  Having a fun Italian dinner with both aunties and uncle, and with their help, saying goodbye in the most positive of ways.

I really enjoyed the characters of my daughters today--all of them.  Little Sis is wonderfully unpredictable, joyful, and funny.  She bursts out with hilarious and random remarks, and is loving and enthusiastic about all things baby.  One of the highlights of her day was being given a little kit of Tootsie's stuff from the NICU:  tiny diapers, thermometer, a little blood pressure cuff, a pacifier, a bottle, and the mask she wore under the bili lights.

Big Sis tells stories, chatting up me and her auntie, explains her feelings, and remains optimistic and resolute.  When she held Tootsie on her chest last night, she told me it was the best feeling in the world, and she couldn't wait to have her own babies.

Tootsie had two feeds last night that were combination breast and bottle, which means two feeds without using her NG tube.  It was so gratifying to have our little determined baby demonstrate she could do it in front of the girls so I could tell them that she is working hard to come home.  Today was a huge leap forward in her progress and my feelings of confidence about her and what the future looks like.  I left the hospital last night to catch up on more sleep at the hotel feeling much lighter and hopeful.  A great way to end an emotional day.

With the girls on a plane en route to home, our family will soon be in only two places, with two teams working hard to support each other on the opposite coast.  I'm feeling like it won't be too long before we are all together again.


Monday, August 12, 2013

Three Sisters

Dear Friends and Family,

Yesterday I met my big sisters for the first time; they came into my room in the morning right after I breastfed at 9 AM.  Normally, I fall deep asleep after a feed, but I stayed awake to stare at them, wiggle around, make noises and show them all my tricks.  Excuse the bragging, but they were in awe of me, calling me "perfect," "the most beautiful baby in the world" with the "softest skin ever."  They didn't want to let me go.  I think I look like Little Sis, but have a similar profile as Big Sis.  They're so big compared to me.  It was amazing to be all together (we miss you, Dad!), and everyone was excited.  I spent a long time in my auntie's arms, too.




They went off to have breakfast and after all the excitement of the morning, I slept through my noon feed, so they headed to Faneuil Hall and Quincy market for lunch.  I was still a little dopey at 3:00, too, which meant they could go get ice cream with my other auntie at J.P. Lick's (my mom's favorite place here in Boston) and then for a swim in the pool at the hotel, where my sisters used up some of their energy and generally acted silly.

While they were at the pool they received the amazing news that my cousin was born back in San Diego, a healthy baby boy!  He was supposed to be born before me, but I beat him to it.  I can't wait to meet him, but I need to keep gaining weight (I'm up to 4lbs. 8oz!).  He's already 6lbs. 7oz. so I have some catching up to do.  We're going to be best friends.

Mom came back to feed me at 6 while my sisters took showers and got ready for dinner.  They came over to see me, but I stayed in my isolette and listened to them talk to me while I nodded off.

Mom and auntie and my sisters had dinner in the hotel, which took a really long time!  Everyone was very tired since my sisters' and auntie's plane flight was delayed--they got in at 2 in the morning.  But Little Sis was determined to come with Mom back to the hospital for my 9:00 feed and weigh-in.  She got to help change my diaper, watch my nurse weigh me, see me breastfeed, and then hold me again.  I stayed awake so she could talk to me and kiss me goodnight a million times.  I heard her tell Mom she will help her with whatever I need.

My mom and my sisters are so happy to be together and here with me, but I can tell they don't think it's enough time.  My sisters are very sad that Mom and I are not coming home with them.  They need her, too, I know, so I am going to do my best to get big and strong so I can join them and Dad and meet my dog sister.  Mom feels sad that she can't be every place she wants to be and with all of us together.

Big Sis is still sad about our cat, Koshka, who died before I was born.  She talks about her a lot and cries, too.  I know they had a special relationship.  Koshka used to snuggle against Mom's belly, pregnant with me, at night in bed.  She probably did that with both my sisters, too, since she was around before we were.

I can't wait to spend time with my sisters today.  They don't know it, but we're going to try and feed me with a bottle today, and Big Sis gets to give me my first one (I will try hard to cooperate)!  It will be an exciting day for sure.

They leave very early tomorrow morning for home, so we will say goodbye this evening and they will spend the night with my auntie and uncle at Harvard.  My other auntie will stay here with Mom and me for a little while longer.  I know Mom has enjoyed sleeping in a hotel for a few nights, but she comes back early in the morning to see me and to hear the doctors and nurses talk about me at rounds.

I hope my family has a wonderful day here in Boston and loves this city as much as I think I will (I'm the only one who hasn't been outside yet!!).

Love,

Tootsie

Saturday, August 10, 2013

Our Digs

I've been living in the hospital for a month now.  That's a pretty long time.  Of course, many people endure long hospitalizations for illness, but the funky part about my stay is that besides the four days when I was recovering from my c-section, I've felt pretty fine.  Bedrest wasn't about being sick, and now I'm really here to serve our baby.  But because I don't leave the hospital very often, even now, the whole thing feels surreal.  It's like time is suspended while at the same time we are carefully marking days and weeks passed and milestones.

Here's our "apartment":


Tootsie's isolette is on the left, the breastfeeding chair is in the center.  My couch is in the back.


The view from my area to the door. Hi Tootsie!


My breastfeeding station.


My couch made into a bed (with a slight slope, but not so uncomfortable).



Our view!  

I spend a lot of time here.  As I tell the nurses, if I had given birth to her early at home, I would have had many distractions and responsibilities which would create conflict in my mind about where I belong.  Here, where I belong is very clear:  with my baby.


34 Weeks



Yesterday the nurses reminded me that Tootsie is 34 weeks, gestationally, the day we hoped to deliver.  I reminded the doctor who was planning to do my c-section that I stood him up; sorry!  We both congratulated the staff on recognizing, with so few cues, that our baby needed to come out when she did.

Time is passing and things are progressing.  Breastfeeding is getting easier and easier for her and she is drinking more milk.  Today she wore real clothes for the first time, which fit her better than the hospital-issue shirt made for a six-week-old full-term baby.

She has plenty of spunk.  Tootsie manages to find and pull out her NG tube.  She kicks out of her swaddle.  She is regularly alert and watchful.  One nurse called her Queen of the NICU.

After lunch I took my buddy from upstairs (at 28 weeks and hoping to make it much longer) on a wheelchair field trip down here to the NICU, where I introduced her to staff and showed her the ropes.  She met Tootsie, too.  We had some long chats about waiting and remaining hopeful and battling fear.  In the NICU we do basically the same thing, but with our babies here and in the company of reassuring nurses who know preemies so well.  Upstairs on the antenatal ward, the unknowns are daunting.  I admire my new friend's patience and sense of humor.  She's going to be fine, I feel, and I hope to celebrate 30 weeks with her before we leave.

Today's surprise was the delivery of a sandwich for me from a local deli, and ordered by my old work husband/principal/colleague/friend back in San Diego.  There are so many layers of awesome and thoughtfulness to this gift.  He had to make some pretty complicated logistical plans to get me the sandwich, including befriending the woman at reception over the phone, who got a kick out of the whole thing.  He and I had a hankering for sandwiches (I did in particular during this pregnancy) and a tendency to try and get each other to make one appear when we hadn't brought lunch or weren't excited about cafeteria fare.  There were many discussions about who owed whom a sandwich or salad.  I may owe him a sub after this feat (though I think I have some reasons he might still owe me...).  Even the drinks he ordered reflected his knowledge of my habits and an inside joke.  I'm going to miss him so much this year.

I'm beyond excited to have all three daughters in the same room today.  The elder girls will have a chance to hold their little sister during the course of the visit.  It's going to be great.



Thursday, August 8, 2013

I'm a Reader with a Capital R

I spent much of today Skyped into a work meeting.  I haven't talked a lot about how it feels to take a new job and not be there to do it; the feelings I have about that--guilt, acknowledgement of the release of control, some sadness, a little fear, and a dash of insecurity--are all eclipsed by the single-minded determination I have to take care of my baby, first and foremost.  Nonetheless, I'm trying to keep up with emails and answer questions--lessen any of the responsibility I can off the shoulders of our two assistant principals, office staff, counselors, and teachers.  Being a part of today's meeting was reassuring, then, as I felt more a part of my team back at work, more of a contributor, part of the loop.  It will be challenging for me to honor my own medical leave when I return, and also satisfy the part of me that will want to--and which believes it will be easier for me in the long run if I--keep abreast of what's happening at school.  The first day of school with students and staff!  One of my favorite days of the year--the excitement, anticipation of relationships, shared experiences!  I will miss it.  But it will all be okay.  Those relationships will wait for me.

Our baby did her job of eating and sleeping and enjoying some awake time, too.  I held her on my chest, skin-to-skin today, one of the more moving experiences I think there is to have (for anyone).  It made me think of my husband, who loves "kangaroo care" and practiced it with both our other daughters.  I can't wait to bring him and his baby back together...

Tootsie's big triumph of the day was gaining weight so that she now surpasses her birthweight, the goal for any newborn.  Hoorah!

Today I had a meaningful conversation with the man who delivers our (parents') meals here at the NICU.  I was late to breakfast and while he waited for me to finish and fill out menu selections for lunch and dinner, he grabbed a book off his cart and began reading.

I asked him what he was reading and he launched into an ode to reading with an admission:  "I'm an addict;" he confessed, "I'm a Reader with a capital R."  He elaborated that he took vacations not to travel but to read.  And that sometimes he preferred reading to just about anything else.  "Addictions take many forms; I am not sure this one is altogether healthy," he owned.

He asked what subjects I enjoyed reading about and I shared that I preferred novels.  We talked for a while about fiction, and then he revealed he liked to read about Eastern philosophy.  He shared that he meditates at a local temple--it's secular, he said, but nevertheless a transformative place.  "It's good to be alone with your mind.  To listen to it, see what it's doing. Understand it, quiet it."

And then it was time for him to go.  He reminded me what time dinner was, and not to let it get cold.

He never did tell me what he was reading.

My conversation with him was such evidence of the serendipity in unforeseen circumstances.  I'm here; I have some time; I'm meeting people and sharing stories.  It's one of the greatest joys in life to me, chance encounters and fleeting moments that are nonetheless meaningful because they're about human connection.

Whom have you met recently that you may never see again, but you shared a meaningful conversation or experience?  I'd love to hear your story.

Also, I just started reading the novel The Middlesteins, but I'd already recommend it.

Wednesday, August 7, 2013

Support

I woke up this morning feeling a little off.  I just started my second week of c-section recovery, and boy do I wish I could remember how I felt from day to day with the last two.  Some days it's exhaustion, some days it's pain from my insides doing good work to heal, and some days, like today, I think it's more the emotional and hormonal outpouring that's part of having a baby.  At any rate, it's like I woke up this morning with one eye trained on myself, suspecting I might feel weepy for no reason.  I took a refreshing shower, and I didn't actually cry until my old friend arrived, having driven far to visit me. He's the kind of old friend who is such a good listener and kindred spirit that I felt a huge rush of relief when I saw him.  He was just what I needed today, and I think the nurses would agree, so was some fresh air.  We walked and talked and marveled at what a lovely, busy city Boston is.  And talked some more.

Today's challenge was that a little blood clot formed in Tootsie's PICC line.  The clot was mentioned at rounds, and the solution offered was to attempt to flush the line.  Which didn't work.  The next attempt would be insertion of a solution to dissolve the clot--two tries.  I wasn't particularly anxious about this plot twist, trusting the nurses and feeling confident it would work out.  But the first attempt didn't dissolve the clot.  "Think positive thoughts!" our nurse said before the last effort.  The celebration afterward, and the fact that other nurses on the floor joined the high fives, gave away that they were more worried than I was.  We don't have the clot to be concerned about, anyway.  Some kind of crisis averted, I don't need to know which kind.

A physical therapist came to visit Tootsie and watched her kick herself out of her swaddle and into a new corner of the isolette.  She prescribed a starfish, a beanbag shaped like the marine animal, which is draped over her legs and prevents her from coming loose and therefore overstimulated.  I'm learning that preemie babies need a lot of quiet downtime for growing and brain development, which makes sense when you consider that where she should really be is firmly ensconced in the womb, warm and quiet and safe.



The occupational therapist taught me today that many forms of touch we, and children, find soothing--gentle patting, soft circular caresses on the head or back--can actually be noxious to a preterm baby. I watched as she demonstrated "intentional touch" as Tootsie's arms and legs flailed about in her isolette.  She placed one still, firm hand on our baby's head, and one on her legs.  Suddenly, Tootsie became  quiet and watchful.  And she remained calm after the OT released her hands.

A social worker who visited (and entertained) me while I was waiting upstairs came by in the evening to invite me to a parent support group meeting happening at the end of the hall.  I left my friend to watch over Tootsie and went to check out the meeting.  There was one other mother there, a woman I'd seen often in the Family Waiting Area and who I knew was also spending every night.

 I think I'm a big fan of support groups.  I've had similar experiences in my school's Parents' Book Club:  I walk away with more wisdom, more compassion and empathy, and most importantly,feeling more normal.  Tonight was no exception.  My new friend's story was heart-wrenching, and we both found opportunities to reassure each other.  She invited me in to see her baby, apparently ready to go home in two days.  What a gorgeous little girl.

I've had a few teary calls from our girls, having a wonderful time with cousins but missing their mom and dad.  It's going to be a wonderful reunion (and introduction) this weekend, and I'm looking forward to spending the night with them, snuggling.  I'm so appreciative of my brother and sister-in-law, who've escorted them to and from Boston, and enriched their summer.

Speaking of support, thank you for your well wishes, gifts, encouragement, and offers to help.  We come from quite a village, with satellites all over, including Africa!   Love abounds; we feel it.
I'm going to try and sleep now, at least half as deeply as my little roommate.

Tuesday, August 6, 2013

Beep Beep Goes the NICU

I went upstairs to the thirteenth floor yesterday morning to visit my friend I met on our antepartum blind date.  She's working her way to milestones:  28 weeks--so close, 30 (she's planning a deep breath for this one and I'm planning to celebrate with her), 32...34.  Hearing about Tootsie's progress at 32 weeks is heartening for her.  Hearing that she has no contractions nor leaking fluid is heartening to me.

Seeing her reminded me of the simpler times, pre-baby and awaiting her arrival in the hospital.  I had contractions, sure, and my vital signs were checked more often, but I also read four novels, drew pictures, stayed almost ahead of the email curve, and returned phone calls.

Now I am like any new mother, determining the feasibility of a shower tomorrow morning between feedings, pumping, diapers, my own meals, and communicating with the outside world. And I even have nurses helping me (and baby) out.  And three meals delivered if I want them.  Little babies require big changes.  Also despite being a little baby, what a huge presence.

Yesterday's accomplishments were successful insertion of the PICC line (which will stay in for the duration to deliver antibiotics), an ounce of weight gain, and temp droppings in the isolette (she's regulating her own body temp better and better).  Encouraging signs!  My own private goal for Tootsie and myself: be home before Big Sis's birthday on the 29th, with time to take the girls back-to-school shopping as I promised.

I really started missing the elder sisters in a visceral way this week; finding their clothes they left behind at my sister's house made me pine for them.  They're having a wonderful time with their cousins, who are like siblings to them, but Big Sis is putting all her anxieties and fears and sadnesses into missing our cat.  We've had some teary conversations about Koshka, our new house, and mutual missing of each other.  Little Sis, on the other hand, seems to be weathering it all pretty well.  I cannot wait to hug them. On Saturday they fly here with my sister-in-law, and I am looking forward to them all meeting Tootsie and her big eyes and pretty funny and admirable spirit.

I went out to dinner with my sister and her husband and his mother, for whom the NICU brought back many memories; 32 years ago she delivered my brother-in-law's brother at 28 weeks.  He thrived and is a smart, successful, and happy man.

We had a lovely Italian meal on Beacon Hill (yo!  Seriously quaint part of the city!) and then I returned "home" to feed my little bug into her full-tummy reverie.

Thanks for the milk, Mama!


In the Family Waiting Room earlier I overheard a dad (whom I'd spotted intermittently) as he talked on the phone.  I heard him refer to the "unexpected helicopter ride" after his wife went into "early labor" and that he "almost lost [his] wife, too."  I heard mention of suitcases and friends' couches, so I suspect they're not close to home, either.  The conversation made me gulp.  So many people going through so much.

In the NICU there's the baby's story, the parents' story, the siblings' story, the life-on-hold story, and the story of the life temporarily abandoned.

Tomorrow I plan on the elusive shower, a visit from an old friend from New York, and the possibility of attending a NICU family support group meeting.

It's also Day 7 in the 21-day antibiotics count.  After which, as my brother pointed out, there's the possibility of parole.

Have a great day, friends!

On the Seventh Day

Last night Husband and I slept over at my sister and brother-in-law's place in anticipation of his flight back home in the morning.  We had another great double date, this time over sushi (and one of the best-tasting beers ever).  We returned to our room at Harvard, the scene of the crime (my ruptured membranes). Last time I was here, I had rushed off to the hospital, wondering what was next. This time, after a delicious vanilla bean ice cream and long shower, I got to snuggle my husband, whom I won't see again for two weeks or more.

Husband woke early to swing by the hospital and say one more goodbye to Tootsie en route to the airport.  My sister dropped me off at the hospital just in time for rounds and another go at breastfeeding.  I got some great new tips from today's nurse (breastfeeding a preemie is different), and we even tried a nipple shield, which Tootsie  rejected.

I held her for a long time afterwards, and Skyped into a work meeting for a while until she set the alarms off by going too long between breaths.  I caught a quick lunch and then headed back into Tootsie's room, but they were attempting to replace her umbilical central line (which was starting to look red) with a PICC line.  Because it was a sterile procedure, I needed to be out of the room, so I returned to the family waiting area and left behind my computer and Skype, my meds which were overdue, and the breast pump.  After about an hour, a nurse came out to let me know both attempts at a PICC line failed, so they would put in a regular IV, and come to get me.  After another hour of achey, ready-to-burst breasts, I asked if I could go back to the room.  "In a couple of minutes," a nurse reassured me.

But when minutes became a half hour and then another hour, I'd worked my tired and painful post-op body (and questionably rational mind) into a bit of a lather:  Why hadn't they come get me?  Why had the procedure taken so long?  I imagined her crashing.  I imagined her umbilicus was already infected.  I imagined other dire circumstances.  I looked at the family waiting area.  I'd never seen someone else wait so long here.  This is what you get, I scolded myself, for thinking her story was turning good and boring lately.

I wanted to be unemotional, but I wasn't.  I was by myself, feeling awful and inconsolable.  I texted my mom.  She said go ask someone.  I tearily called the nurse station an explained I'd been waiting here for three hours.  Someone will come, they said.   And then my nurse burst into the room, apologizing.  She'd told someone to tell me I could come back in...that person had gotten busy...when I didn't come back she thought maybe I'd gone somewhere...a big misunderstanding.

I was so relieved to return and find a super tired baby who'd been stuck with needles a few times and had to miss a feed.  I gulped down my Motrin and pumped my rock-hard breasts.  All was good, I reminded myself.  My nurse apologized again. She explained that they'd try and place the line again tomorrow.  That Tootsie was so tired and been stimulated all day that what she needed now was rest--no more holding or feeding.

Fine by me.  At least she was ok.  She hardly moved or fussed from dinner time to after midnight.

I put a ribbon on the Prayer Tree in the family waiting area.


She had a feeding at midnight, but at 1am my tired baby was wide awake, having kicked herself out of her swaddle.  We gave her a binky and watched as over the next hour she sucked in vain at her pacifier, rooted in her sheets, and cried, hungry again.  When I attempted to console her with sining or reassurances, the sound of my voice would send her rooting in the sheets again.  We've truly bonded, I recognized.

Tootsie was so wide awake and fussy and not due for another feeding until 3AM (which the nurse was considering giving her a little early), that she let me hold her.  At first she was calm.  But then she spent 30 frustrated minutes in my arms, angry at her non-milk-producing pacifier.  When the nurse said you know, you could put her at your breast, I leapt at the chance.  Finally!

And Tootsie went to town, filling her tummy till she had the mouth-agape-passed-out-look of a satisfied customer.  She slept calmly through to her 6 AM feed.

Lessons from today:
1.  It's never quite Smooth Sailing.  Pretty much ever in parenting.
2.  Before I assume, I should ask.
3.  I need my sleep and medicine to be in my best frame of mind and heal my body.
4.  It can always be worse; I feel that every day here in the hospital.
5.  Some time away from the hospital provides good perspective; I am going out tonight with my sister and her husband and mother-in-law and really looking forward to it.

Today is Tootsie's 7th Day of Life, as they say around here.  Happy little week-old wonder!

A note to friends contemplating a visit:  thank you for your support.  It's hard for me to predict days and times which are good for us, as things change daily.  More and more I will need to be present every three hours for feeds.  Because the NICU is not a place we can hang out for long with visitors, plan on a trip up here to meet Tootsie and a coffee break or meal with me.  We are so heartened by everyone's offers of help and support.  Tootsie's village is already in place and mobilized.  We love you!  

Sunday, August 4, 2013

Together at Last; Together Forever

For the last two days, Tootsie has been subject to standardized testing, regularly receiving scores on a Feeding Readiness Scale which involves nurses, doctors, lactation consultant, and occupational therapist looking for cues from baby which indicate preparedness for breast or bottle feeding (one of the requirements for discharge from the hospital, which can easily be viewed as a preemie's first milestone toward college acceptance).  We thought about hiring a tutor, but settled on cheating instead, openly cheering her on like sideline soccer parents when she sucked vigorously on her pacifier, and miming rooting behaviors.  We had limited opportunities to tip the scales in her favor as she spent most of the last two days with blindfold on, under the bili lights.

Nonetheless, we were told that her averages were good enough that she could try a "non-nutritive feed" today--basically a dry run in which I put her near the breast after pumping and during one of her scheduled tube feedings, so she could begin connecting the dots.  She was young, I was reminded, so we could expect her to maybe snuffle around, put her mouth on my breast, basically demonstrate interest.  There would be lots of opportunities to repeat this "pretend" breastfeeding until she began truly getting it.

I was super excited for this qualifying round of quasi-breastfeeding, as it represented hope that one day I'd be feeding Toots as easily as I did Big and Little Sis, with breastfeeding an act of bonding and downtime togetherness I view as a highlight of parenting.

But hey, you know, no pressure.  I know many mothers and children for whom breastfeeding was a struggle or not an option.  And it's only one of the myriad ways parents connect with newborns.
At 11AM, after I pumped and she had a diaper change, our nurse settled her onto my chest.  It was only my third time holding her, and the feeling of her in my arms was still overwhelming.

"You can go ahead and have her assume the position, if you'd like, and present her with your nipple," our nurse encouraged me.  Husband hovered nearby.  I clumsily shifted her to a cradling position as the nurse reminded me to position her so her body faced mine.  I moved her down slightly to align her mouth with my nipple.

And darned if that little girl didn't open her mouth wide, chomp down, and start sucking.  No big deal, she seemed to emphasize as she occasionally drew back and repositioned herself on my nipple.   We let her practice on both breasts till she passed out, milk-drunk, in my arms.

When Nap Time, AKA Break from the Bili Lights, was over, our nurse came back to collect Tootsie and return her to her tanning bed.   "We'll, that was a game changer," she shook her head, pleased.  "What we'll do next is have you pump a little beforehand so your flow doesn't overwhelm her, and a couple of times a day, we'll give her the breast first and see how much she eats.  Wel'll continue to supplement with tube feedings for now, and then discuss a combination of breast and bottle, as she will likely need additional nutrition."

Right, so tomorrow I could begin regular breastfeeding?  It was like Christmas in August.  "Thank you, girl," I whispered to the baby I'd only spent a few hours holding thus far.


Later it was Husband's turn for time with Tootsie on his chest.  He returns today to California, and likely won't see us until we return in a few weeks, headed home for good.  I watched my partner's body unwind from weeks of stress as he relaxed his muscles and allowed the perspective of be holding an infant overtake him (meanwhile, Tootsie got another A+ for rooting behavior as she scanned her dad's chest for a nipple in vain and settled for a binky, contentedly).

Her Big Sisters are Next. I can't wait to meet you! exclaims Tootsie
It was a banner bonding day.  No more desats, no growth on the spinal tap culture.  She might be about to join the ranks of the "grower/feeders," who hang out waiting to graduate with all their requirements met (weight, feeding, able to regulate own temperature, mastery of pre-Algebra standards).  We also need to mark 21 days of antibiotics (today was Day 4), and review the results of the MRI.  But we're on our way!  


Saturday, August 3, 2013

My Glow Worm Roommate

I awoke yesterday knowing it was my day to be discharged from the 13th floor, my home for the last three weeks.  I would miss the doctors and nurses and my next-door neighbor; after all, as I joked while saying my goodbyes in the afternoon, most of my friends in Boston are at Mass General Hospital.

I felt ready to go, though.  As with my prior c-sections, there's a little fear of being sent home without the support of staff bringing meds, checking incisions, taking temps, and generally clucking over me. No more meals in bed, too.  I prepared for my independence the past few days by getting up and helping myself whenever possible, remembering that this time I wasn't heading home to take care of a newborn and continue to convalesce.  She'd still have a team of caregivers and I'd be on my own.

So I did what anyone displaced in a foreign city and contemplating her options might do:  I moved in with my daughter.  I'm even sleeping on her couch.  This way, I can stare at her all day long (an arguably better view than in my last digs) and be available for developmental milestones which involve me (practicing feeding, for example).  They even bring parents of NICU babies three meals a day.

Husband is staying in the family dorm room--a room hardly bigger than its twin bed.  Hopefully he's getting great sleep.

After acclimating to our new home base, holding Tootsie, and snoozing for a bit, we got excited to head out for dinner for my first non-hospital meal and foray on city streets in three weeks.  Right as we exited the hospital Nephew Steve called to say he and his girlfriend had just arrived in Boston, up from Connecticut.  We made it a double date.

We walked (slowly) through Boston to the harbor for dinner.  It was a beautiful, balmy night, and I played tourist again (picking back up where I started three weeks ago) as we passed the Old State House and several other landmarks nestled among more modern city buildings.  I felt a little giddy, and like a normal person (though my outfit "choice" reflected pajama chic, so any restaurant remotely fancy was out of the question).  We wound up at The Sail Loft, where both Husband and Steve had memories of previous time spent in Boston.  I chose delicious halibut and Husband devoured the lobster roll he'd been craving.  I was great to catch up with family in a city across the country, and under these odd circumstances.

By the end of dinner, though, I was feeling beat and far away from my little baby.  We cabbed it back to MGH to introduce Steve and Tracy to Tootsie.

Like most preemies, she needs phototherapy to counter high bilirubin counts, as her liver isn't developed enough to process bilirubin efficiently.  She'll spend yesterday, today, and tomorrow under the lights to counteract jaundice.  We'll take her out once a day for extended snuggle time, though.


In other Tootsie news, she hasn't had any apneic episodes, and she's regaining weight as of her most recent time on the scale.  Her spinal tap culture hasn't grown any bacteria yet.  All are good signs.

Tonight Husband and I will spend with my sister and her husband in anticipation of Husband's flight back to San Diego on Monday morning.  I'm hoping the girls will be here to meet their sister by the weekend.  Until then, it's all me and my little glow worm, getting the attention it appears she was demanding three weeks ago when my water broke.  

At your service, Sweetie!

Friday, August 2, 2013

What We See Is What We Have: Near Perfection

Let's begin with a goofy picture of Punk Rock Baby Tootsie.


Her hair and the shadows of the blanket beneath her head conspire to make it appear she has quite the mohawk.  In fact, she has a surprising amount of corn-silky-soft black hair in a pixie 'do.

Baby had a great night last night.  She had only one apneic episode; she tolerated her feeds well and appears ready for an increase in volume; she began sucking on a binky.

When swaddled and snuggled in for the night, she was so calm and expressive with her eyes (so very cute, our nurse told us), that the nurse beckoned others to come admire her, too.  We're totally biased, of course, but Tootsie is clearly building a dedicated fan club.

Last night's nurse let us know that she was requesting to be part of Tootsie's Team.  I'd forgotten that my sister (and mother of a preemie cousin who is now a healthy five years old) shared that our baby would have a core care team of nurses.  Because we know that she will be in the hospital for at least 21 days to run her courses of antibiotics, they're beginning to assemble Tootsie's Team.  She's taking letters of interest and applications and clearly showing off to win over the pool of qualified potential draftees.  Tootsie's Team and her room will be our home away from home, and we will all become familiar with one another as we collaborate on her care and the nurses train us to take over delicate aspects of protecting a preemie baby.

We were present for a consult and examination by the Occupational Therapist.  She checked reflexes and observed her movements and alertness.  We all noted her rooting behavior, one of the signs she is preparing herself to suckle a bottle or breast.  Her rooting and sucking makes her eligible for daily scoring on a feeding readiness scale, and we will get to present her with an empty breast soon for her to practice licking and tasting.  I'm very excited about this step and motivated to breastfeed, not only for the health and convenience benefits, but because it's a most awesome bonding experience for mother and baby.  I've cherished it each time, and am more determined than ever to breastfeed our last little one.  I'm pumping every three hours around the clock to stimulate my production and generate milk for her feeds.

This afternoon was our Family Meeting.  When I told my brother in the USVI that we had a Family Meeting planned for later in the week, he responded, "Hmmm.  So you and Husband and Tootsie will get together and talk things out...?"  Haha.

The Family Meeting comprised Husband and I, two of her nurses, the social worker, a hospital administrator, a neonatology intern and the neonatology fellow, who ran the meeting.

We expected to discuss growth and development goals, thresholds for stepping down to the Special Care Nursery, and plans for family accommodations after my discharge from the hospital tomorrow.

But the meeting began on a very serious note, with a review of the events around her infection and its severity, and how The Team would continue to address potential ramifications.

Honestly, once we'd gotten through Wednesday and marked two clear blood cultures and Tootsie's promising recovery, The Infection moved to a more distant and less significant part of my hard drive.  But the doctor dragged it right back onto the desktop, reviewing mortality rates and statistics related to defects and brain damage.  Tootsie would have another spinal tap, soon, the doctor reminded us, to rule out lingering bacteria in the meninges and fluid.  And close to the end of her 21-day courses of antibiotics, Tootsie will have an MRI so we could see effects on the brain of the infection, if any.  Statistics are around 50% likeliness that she will have some neurological effects (developmental delays, cerebral palsy, seizure disorder, among other possibilities). While we're fortunate that infection was expected and antibiotics started right away, she still grew cultures from her first lumbar puncture, and we don't know how long she was suffering from infection in utero.

We moved on to discuss her recent notable developments, alertness, and activity levels, and goals for her feeding.  Much more fun topics!  We closed the meeting by talking about my discharge and options for sleeping on the couch in Tootsie's room, temporarily occupying a family dorm room in the hospital, and making use of hospital-provided taxi vouchers to shuttle me to and from my sister's apartment while I am still healing from the c-section.  We toured the dorm rooms (not unlike the closet-bedrooms I slept in in college), and they showed us the microwave and fridge and stash of saltines and peanut butter and jelly packets for parental snacking under duress.

And then we went back to see Toots, who was bright-eyed and adorable as usual, enduring a diaper change and looking, really, quite normal.

It turns out it's hard to look into those eyes and worry.  She's a pretty reassuring bug.

In the conference room, the specter of having a child with neurological challenges felt scary, disappointing, mysterious.  But with our baby in front of us, progressing as a child her gestational age would and should, the fear is unsteady on its feet.  If this little girl, with a tight grip on our fingers and eyes that respond to our voices, has developmental problems, we will certainly learn about them and grow up with them together.  Right now, she's exactly what we signed up for--a baby (and she has already far exceeded our expectations).  No diagnosis or knowledge revealed by testing will change how she presents to us at this moment, and what we see:  a nearly perfect baby human (and a darned cute one at that!).  Of course, not all is as it initially seems sometimes--a mohawk might just be a halo, or a crown, or an illusion.  But the magic of parenting is how your children are immediately yours, no matter what.  Oh how I feel that today.

We're bound to find out lots of things along her way--quite possibly that she's disorganized, impulsive, maybe weepy under duress like her mother, or a little grumpy like her dad.  She may have a thing for numbers and not for spelling.  She could have two left feet.  She might sing off key.  Nevertheless, hers is exactly the model we've fallen in love with and are taking home, and we accept all her features and those which will reveal themselves to us as she gradually reveals herself to the world.

It's such an exciting prospect, that we're only on day four of this unfolding saga, the discovery of our new family member.  It's worthy of a daily celebration.

Cheers!