Tuesday, February 19, 2013

And so it began...

Lydia had her 3 month birthday on the 9th while Naomi was on her feeding strike vacation at Grandma and Papa's house.  Her third month was a pretty tough month for us.  It was going really well, I mean, it was almost impossibly hard, but going really well none the less, until Naomi started her feeding strike and we all except for Rob got RSV.  There were a lot of snow days and two hour delays that left us nannyless, but we did well.  Not that we did it alone.  My parents help ALOT.  I mean, alot alot.  There were weeks where Grandma was here all day for 3 days or more, and then other days when Naomi, Lydia and I went to their house for the afternoon...and in to the evening.  They give baths, they walk a fussy baby, they entertain Naomi, Grandma helps keep our house functioning.  They do alot and they don't get much of a break from us.  I feel bad about that, but what can I do?  My sister tells me not to feel bad because it's not like we're off drinking and partying and just dumped the kids on them because we're too lazy or disinterested or selfish to care for our own children.  We're worn thin.  It is what it is and they say they are happy to help and I am only too happy to believe them and take them up on the offer...frequently.  So we've survived Lydia's first three months, which (should?  please?) be the hardest and she is delightful.  So happy, less fussy, more content.  Smiles all the time.  Squeals and laughs with delight.  Plays games.  She uses her hands!  She's brought so much light into our darkness.

Naomi at three months was nothing like Lydia.  She was still strangely content and sleepy...a lot like a newborn.  She had done some new things.  She smiled to my voice, she had cooed a few times at random.  She had learned to use her feet to jingle a bell hanging from the fancy European toy hanger she got for Christmas.  She had finally gotten the hang of nursing after a second nursing strike right after her first Christmas.  Her hips moved into their sockets appropriately so she was out of her pavlic harness, which was wonderful.  It was wondeful to be able to hold her and feel her little body under my hands and against my body instead of the harness.  She loved being able to stretch out and move, so sleek without the bulky harness keeping her frog-legged.  We thought, AH...finally we can move on to  a normal babyhood.  Except not so much.  We took her to her three month check up and the pediatricians were concerned with her development but said to give her a little more time since she was born a little early. That weekend Rob and I had a heart to heart talk where we unloaded our concerns and anxieties about her...her eyes...always roving, never stopping to fix and focus.  Her development...she was doing virtually none of the things the develomental checklist said she should be doing and was doing almost all of things thing on the red flags list.  That was a Sunday.  We had her 3 month pictures taken the day before and went and picked them up on that Sunday.  The day started so happy.  I got her all dressed up, we looked at the proofs, giggled and laughed over how cute she was, brought the pictures home, admired them, and then started to talk.  We called the pediatrician Monday morning for another appointment that afternoon.  We brought a list of our concerns.  It wasn't the first time we'd addressed them.  I had had her at the doctor every few weeks since she was born saying "Something is wrong with her.  She isn't like other babies."  And I was told to be patient.  Which frustrated me, but I understand now that it really does just take three months to see what a baby will or will not do.  The doctor agreed with our concerns and made an appointment at Children's Hospital Pittsburgh Genetics for the next morning.  Rob emergently cancelled a clinic full of patients for the next day.  We went home, packed for an overnight stay and drove in to Pittsburgh that night.  With each of the 90 miles that passed I got more upset.  Each mile closer to Pittsburgh was one figurative step closer to being told that everything that I feared was true.  By nighttime, I was a mess.  I remember dressing her for bed in a fleece sleeper Rob bought her for Christmas and starting to cry uncontrollably.   I was weeping and sobbing and I could not stop.  It went on all night, for hours.  I couldn't sleep, I couldn't settle, I couldn't cope.  At 3am Rob took me to the ER at UPMC Presbyterian Hospital.  I remember trying to explain to the triage nurse what the problem was.  "My baby...look...she's not right...see how she stares?  Do you see?  She doesn't look at me." I said while holding Naomi and weeping, begging the nurse to see what I saw.  She said, "I do see that."  I wanted to be told that I was crazy; that she was fine, but I was also relieved that someone was admitting that they saw what I saw too.  And then they gave me something to make me sleep.  So I slept in a curtained off bay in the ER for a few hours before the appointment while Rob sat in a chair next to me holding Naomi.  They discharged us from the ER and we walked across the street to the Genetics clinic.  Have you ever been to a genetics appointment?  It's awful.  There was Naomi, our beautiful three month old baby girl that we loved and cherished, that we had waited for and wanted, who melted us with her cuteness, whose every way and quirk we found endlessly charming and endearing.  And there were the doctors, doing their job, the job we brought Naomi to them to do.  And their job was to go over Naomi millimeter by millimeter and see how she matched up to typical and to syndromic babies.  Are her ears set too low?  Is her nasal bridge too flat?  Is her neck to thick?  Are her eye folds properly formed?  And so they picked her apart, piece by piece, making a list of everything that might be off.  And that was just her physical body.  They tested her development, or lack there of, too.  And so everything that I had loved and cherished, cuddled, kissed and carassed, was found to be wanting.  Was found to be wrong, abnormal, malformed, ill developed, symptomatic of some big problem.  My heart broke, crushed into a fine powder and blown away in a storm of harsh reality.  Naomi was admitted for further tests.  Rob cancelled the rest of the week.  Naomi got an IV.  It was in her scalp because she was too little to find a vein anywhere else. They took endless blood, x-rays, EEG, EKG, ultrasounds of all of her organs.  It was a nightmare.  The first night was awful.  That was at the old Children's Hospital and all of the rooms were doubles, so there was room for only one parent to stay, me, since Naomi was breastfed.  The rule is that the baby sleeps in the crib.  The cribs are high off the ground to facilitate medical care.   There was a narrow pull out recliner for me to sleep on, almost on the floor.   The crying started again.  Again, I couldn't stop.  I remember telling the nurse as I craddled Naomi in my arms on the pull out recliner "Naomi, we call her Little Bear, she won't sleep unless she is next to me.  Her bassinet is pushed up against my side of the bed and I have to sleep on the edge of the mattress with my arm over her."  The nurse let me sleep with Naomi in my recliner bed, and that was the beginning of our co-sleeping, which is what Naomi, Little Bear, had wanted all along.  I cried and cried and cried.  And cried.  The nurses were amazingly compassionate.  They would come in to check Naomi's vitals and stroke my hair and talk to me, soothe and comfort me.  I remember the man and his daughter who shared the room with us.  She was 3.  Profoundly disabled.  Severe seizures, undiagnosed.  Her name was Sophia. She had a little stuffed fish toy that she liked to have placed in her hand.   I could hear him sighing with sadness as I cried.  He knew.  He knew what I was going through.  I believe he was angel sent to give me comfort.  I remember him coming over to tell me he was going out and asking me if I needed anything.  I asked him, is it ever okay?  Can we ever be happy again?  He looked at me full of compassion and sadness and told me, "You'll be happy again.  It will never be okay, but you will find happiness."   I think of him and what he gave me that night often.  Needless to say, considering my emotional state and the reason for our admission, we were moved to a single room the next morning, an isolation room usually reserved for children with infectious diseases.  Which was good, because Rob was able to stay with us for the next three nights, sleeping first on a pile of  pillows on the floor and then on an air mattress.  We were there for four nights.  We'd brought enough clothes for an over night.  My sister brought me clean underwear, other people brought changes of clothes, the parent support group brought us a bag of toiletries.  The day before our discharge Rob had gone out to get me a Primanti's sandwich, a Pittsburgh specialty.  Bacon, my favorite.  I was just ready to eat when the doctor came in.  Naomi was laying on her crib, playing.  Rob's parents were there.  The doctor went over the list of possible diseases she thought Naomi might have.  One was more awful than the next.  Batten's was on the list.  We were told that whatever she had it was severe and we should expect the worst.  She said it forthrightly, but with care and tenderness.  I pulled Naomi off of her crib mattress and onto my pullout recliner bed, curled my body around hers, put the blanket over us, covered my face and began to shake and sob uncontrollably.  Rob asked his parents to leave.  He held the two of us together in his arms and we cried over our beautiful baby girl, all of our dreams shattered, our future filled with certain loss. The family that we had wanted was irretrievably gone.  The life we had worked and strived and planned and waited for was gone before it ever started.  We began grieving our bright eyed baby girl who we were no longer certain would grow into a bright eyed child.  It snowed heavily that night.  We were discharged the next day and drove home through a world muffled and newly white.   We came home to package of sewing patterns I had ordered the week before, patterns I spent weeks carefully choosing for Naomi.  Patterns that represented not just years of sewing I had planned for her, beautiful dresses for birthdays and Christmases and Easters, but also years of growth and development and potential and happiness.  I opened the package and wept anew looking through the carefully chosen patterns, not knowing how many I would get to make for her.  We began receiving emails from our geneticist telling us Naomi had been cleared of this or that horrible diesease.  We celebrated each one.  We went to dinner after being told she did not have a particularly horrible disease.  I burst in to tears at the table after the waitress carelessly commented about how Naomi would be crawling soon.  The Steelers played in the Superbowl shortly after that, Rob's brother and his girlfriend hurriedly coming in for the game and to meet Naomi for the first time, because we literally did not know how much time she would have.  The Steelers won.  We didn't care.  Things that seem important or exciting are strangely hollow and, frankly, stupid, on this side of life.  I finished her christening gown, which I had begun when she was a newborn, and we planned her baptism for Sunday, February 15th.  Naomi and I went shopping with my sister and nephew the Tuesday before her baptism.  In a moment of hope I bought her a teal sunhat with white polka dots to wear in the pool my parents were putting in that summer.  I tried it on her and showed it to Rob.  She looked cute and we laughted happily.  I took her in to his office the next day for lunch. I showed her off to his staff and coworkers.  While I was there we got an email telling us that Naomi had batten's disease.  We googled it, read the description, felt the bile rise in our throats, the hot tears in our eyes.  I grabbed Naomi, clutched her to my chest, and ran from the office, past all of the staff,  face contorted with grief, tears streaming, and out to the car and drove home.  Rob came home that night.  We held her and talked, searching for a new normal, for a way to find joy in her in the midst of losing her.  Her new sunhat, bought on a moment of hopefulness, hopefulness that maybe what she had was a static problem and not a progressive one, caught my eye and laid me low again.  I didn't know if she would ever wear it, and if she did, would she know it?  Would she still have the capacity for joy and experience?  And so began the months and months and months of weeping, day in and day out, holding her and weeping, crying so hard and so long I felt like my eyes were turning inside out, my face raw and chapped from the salt in my tears.  That was our life with Naomi at three months.

I have sewn most of the patterns in that package, each one a love song to Naomi composed of fabric, thread and lace.  There are a few left.  I hope I get to sew them for her too.

Naomi, Lydia and Clementine this morning.

Lydia on Valentine's Day

Naomi on Valentine's Day

Lydia at her baptism

Naomi at three months

Naomi playing with her jingle toy

Naomi the day we picked up her three month pictures

Mommy and Naomi the first night in the hospital.  Notice her IV.  We thought it made her  look like a little bug.

Naomi having a test to determine if she was having seizures

Naomi in her Hospital Hound hospital gown.  

Daddy holding Naomi

Daddy and Naomi with her glow worm and her Iceburg doll, both of which she loved, and the Little Brown Bear stuffed animal Daddy bought in the hospital gift shop to watch over her.  It's stll in her bed, watching over her every night while she sleeps.

Naomi's cousins came over the first weekend we were home from the hospital.  We all went sled riding, determined that Naomi would experience as much of life as possible.

Naomi meeting Uncle Jon

Naomi and her cousins Grace and Margot watching the Superbowl.

Naomi having a bath.  She's always loved water.  We bathed her in front of the fire.

Naomi in her sunhat.

Naomi and Papa on her first Valentine's Day

Daddy holding Naomi during the Mass before her baptism.

Naomi being baptized.  The deacon asked Grace to be his special helper, which she loved.  She was five.  Uncle Brent and Auntie Sarah are Naomi's godparents.

Naomi in the baptismal gown I made for her.


  1. Here in the dark
    in an ice storm
    reading ~


    Words fall flat and mine will never
    cover how
    it feels to live
    this kind of grief
    and pain.

    I am so sorry. I am so sad for your beautiful Naomi. For you.

    To say that your love for her pours off the page
    does not begin to do

    Your true, resonant words
    speak more
    than you guess
    ~ ever

    Thank you for writing. I know it costs you.

    More than anyone, anywhere

    With love,

    Cathy in Missouri

  2. I sobbed through most of this. I'm so glad you wrote this out. Both of your girls are just incredibly beautiful--much like their mama. Thinking of you every day.