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.




Monday, February 11, 2013

This is my Vietnam

Papa to the rescue.  Decorated Vietnam veteran, coal miner, postal worker, father of four, husband of 40 years, survivor of many terrible difficulties, Naomi whisperer.  Naomi stayed with him, and Grandma, for three days.  He got her bubbas in to her when she wouldn't drink for me or Daddy.  He has always had a way with her.  He has a way with headstrong people in general.  I think it is his ability to be calm in the midst of a storm.  When we were growing up and were in the middle of a crisis or facing some obstacle we thought we could not overcome he would say  "This is your Vietnam!  This is your Vietnam!  Do you think I wanted to go to war?  I didn't get a choice.  I just had to do it.  Don't complain and don't explain.  You just put your head down and keep...moving...forward."  I hated it when he would tell me that.  I would think, Okay, okay.  I get it.  You went to Vietnam, blah blah blah, what does that have to do with me?  But I did it, too.  I followed the advice.  I got the message.  But I really didn't get the real meaning of what he was telling me until Naomi.  Those incidents, those struggles from my youth, were not my Vietnam.  THIS is my Vietnam.  Batten's disease.  Naomi.  Her illness.  Her difficulties.  The struggle to care for her.   I don't want to do it either.  And neither do I have a choice.  It is a long, ugly struggle that is leaving us forever changed, in good ways and in bad.   I don't even recognize us anymore.  We will always be different.  As my dad is different.  He is not like other men who never went to war.  Not bad, but definitely different.

When Papa came home from Vietnam in 1971 he did not receive a hero's welcome.  He was not treated with honor, or even respect.  The war had become unpopular.  He was asked questions like  "So, how many babies did you kill?"  He had been made different by the horrors he experienced in that jungle half way around the world, but the here he came home to had not been made different.  Life here had continued to go on as it always had.  And so he found here was no longer a comfortable place he could move through with ease.  Here had become strange to him, and he to it.  He no longer fit, as we no longer fit.  We have been made different and we have a hard time moving through our world now too.  So many things are so hard.  For example, I have a very hard time when someone has a baby, in particular a first baby, especially if it is a girl. Why is it hard?  Because I remember when we were where they are...all excited and joyful, anticipating with relish every moment we would have with Naomi...the first eye lock, the first smile, the first step, the first words.  Except none of that stuff happened.  Parenting Naomi has been and will continue to be a battle marked by suffering, sorrow and misery that only ends with death, hers or ours. Not that there aren't joys and triumphs, but it is...Just...So...Hard  it fills me with an irrational rage that those other new parents won't have to experience the loss, the sorrow, the grief, the madness that we have.   Innocence lost is gone forever.

Papa didn't get a chance to rest and be safe while he was soldier in Vietnam.  Infantrymen like him were on duty all the time.  There was no base they retreated to between engagements.  They marched from one place to another, on patrol, engaging with the enemy as the enemy presented itself, until it was time to stop for the night.  They slept outside, setting a perimeter where ever they were.  They took turns being on watch and when they slept, it was on the ground in the open air, their M-16s cradled in their arms ready to be used in an instant.  And during the monsoon season, when it rained for three months straight, they did it all in the rain, never dry until the rains stopped.   No camps, no tents, no nothing.   That's a lot what it is like for us too.   There is no rest.  We're never safe.  We never relax.  We're always at the ready, waiting for the next crisis.  We sleep unsoundly, anxiously.   It's so hard.  It's so crazy.  None of it makes any sense.  We don't know what it means.  We wonder, what is it all for?    The draft board sent Papa to Vietnam and cruel chance sent us here.  And so I think of what he told us about being out on patrol.  Vietnam isn't flat.  It's wooded.  Mountainous.  Big, tall mountains that they had to hike over, carrying 80lb packs on their backs.   He told us, when you are climbing a mountain, whether literally or figuratively, "Don't look up.  If you look up and see how far you have to go you'll just lay down and quit.  Don't look up."  I'm trying not to look up.  Because I don't want to see how far I have to go.  I don't want to know if it is a long or short way to the top.  Both are bad in their own way.  And I really don't want to see in advance what obstacles I have to find my way around and over to get there.  I want to lay down and give up most of the time as it is. So I just keep moving forward.  Because this is my Vietnam and I don't have a choice.

Papa as a soldier in Vietnam.

Papa as a grandfather.

Friday, February 8, 2013

Breaking Point

The last week has been really hard.  Naomi had a high fever last friday and had to go to the emergency room at 3 am.  She has been having fevers for week that have been low grade.  After needle sticks and xrays, they came up with nothing, but the next day she developed a cough and runny nose and has had more off and on low grade fevers all week.  Non stop tylenol.  She then continued to stop eating, and now is very difficult to get to drink.  It has been extremely frustrating and both of us have reached a breaking point.  In addition, Lydia has RSV.  One more thing, there always seems like there is one more thing.  We had looked forward to going to the Penguins game thursday night, but that was scrapped.  Living with Naomi means never being able to look forward to anything.  Last night it reached the low point.  Naomi would not drink for anyone yesterday but Anne's Dad.  We believe that it is behavioral because he is the only one that does not hold Lydia very much.  We are hoping it is just sibling rivalry, but it is hard to take.  Naomi is so challenging normally that this puts your emotions over the edge.  You think things and say things you regret later.  You forget about the good times, it all seems bad forevermore.  Mercifully, Anne's mom and dad are going to take Naomi for the weekend.  It makes us sad and relieved at the same time.  WE hope we can get through this episode without a feeding tube, but how much can you struggle and try to feed someone?  Winter doesn't make it any better either since Naomi loves to go outside.  We will keep you posted.