New Family

Nice to Meet You!

Thank You.

Mirabel is Coming Home Tomorrow!

Tonight, John and I are spending the night in the NICU with Mirabel. Tomorrow, we are bringing her home.

She will be coming home with oxygen, a nasal feeding tube, and heart and respiratory monitors. But she will be coming home.

Over It

Mirabel's IV is in her scalp today. I'm over it. I want my baby home so I can do some natural mothering and hold her when I want to and when she needs it and I want to nurse on demand and smell her. I'm sick of the medicinal surroundings and driving back and forth and only seeing her twice a day and the same view of the brown and gray world outside and the beeps and pings and warnings and bells and the fact that my 8 day old baby girl has three wires on her chest, a feeding tube down her nose, oxygen pumping through a nasal canula, a saturation monitor on her foot and a FUCKING IV IN HER INSERTED INTO HER HEAD. I don't want Mirabel's threads to the angel world to be cut off by the plastic walls of her isolet. I want my sweet and confused little 2 1/2 year old to meet her sister and hold her and rock her and sing to her like we've been excitedly planning with her for the past several months. She can't even visit her in the isolation of the NICU, can't even see her. I'm sick of missing Luciya when she wakes up in the morning because I'm already en route to the hospital. I don't get to help her get dressed or put on her clothes or drive her to preschool. I want Mirabel to thrive and I want her home NOW.

That's What Friends are For

I hit a wall. Processing all of this, and driving back and forth to the NICU, and trying to hold Luciya and maintain a marriage and run two businesses has been so insanely difficult. I was running on adrenaline and I crashed horribly.

So, I reached out to my friends here - Christina, Ashley, Erin, and Kara, who have all offered assistance - and I said, hey, so, yeah, I need you. And they came.

Christina and Ashley brought their daughters Maryn and Eliza over for dinner tonight while John went out to meet Ashley's husband for a beer. And I love them. And I got the renewal I needed.

The girls' personalities, in a nutshell.

Nothing like laughter and TCBY to make you feel sane again, if only for a short while.

Do I Wish We Would've Known?

In a word, No. In another word, Nope.

There are several ways to find out prenatally if a fetus has Down syndrome. There are procedures like amniocentisis and CVS, and oftentimes the neuchal fold is visible in a 20 week ultrasound. I didn't even think to have any of these tests performed.

Mirabel's 20 week ultrasound picture. Cutie!

I am a thinker and a planner. I know that if I had received the diagnosis during my pregnancy that I would have begun the research process. I would have read that children with Down syndrome often have myriad other diagnoses like heart problems, kidney problems, and thyroid issues, many very serious. I would have learned that most babies with Down syndrome have a difficult time sucking, because they lack the muscle tone in their cheeks, tongue, and lips, and so cannot breastfeed well.

I may have had a hard time listening to other mothers talk about the difficulties involved in raising their "typical" babies. I may have worried.

Instead, I enjoyed a healthy, active, happy pregnancy, and relished in hearing her heartbeat on the Doppler at every prenatal checkup. Instead, I didn't let Mirabel's NICU diagnosis as a "poor feeder" keep me from being determined to nurse her. Instead, I received the diagnosis with a sense of calm, and peace, and determination.

Mirabel has surprised us so much so far. I have a feeling the surprises are going to continue.

Guidelines

Some great bits of information from the Treasure Valley Down Syndrome Association's publication:

The correct name of the diagnosis is Down syndrome. There is no apostrophe (Down). The "s" in syndrome is not capitalized (syndrome).

An individual with Down syndrome is an individual first and foremost. The emphasis should be on the person, not the disability. A person with Down syndrome ha many other qualities and attributes that can be used to describe them. So, encourage people to use people-first language: "The person with Down syndrome," not "the Down syndrome person." A person with Down syndrome is not "a Downs."

Words can create barriers. Recognize that a child is "a child with Down syndrome," or that an adult is "an adult with Down syndrome." Children with Down syndrome grow into adults with Down syndrome; they do not remain eternal children. Adults enjoy companionship with other adults.

It is important to use the correct terminology. A person "has" Down syndrome, rather than "suffers from," "is a victim of," "is diseased with," or "afflicted by."

Each person has his/her own unique strengths, capabilities, and talents. Try not to use the cliches that are so common when describing an individual with Down syndrome. To assume all people have the same characteristics or abilities is demeaning. Also, it reinforces the stereotype that "all people with Down syndrome are the same."

Adopt preferred language. Because of the negative uses of the word "retard" that have become common in our society, "cognitive disability" or "intellectual disability" is preferred over "mentally retarded." Also, "typically developing" or "typical" is preferred over "normal."

Diagnosis

Right off the bat, there were some physical indicators that Mirabel had Down syndrome. She was thrusting her tongue out of her mouth and her eyes were characteristically shaped. She was taken away from the birthing room immediately, and we didn't get to see her for more than two hours. When we did get to go up to the NICU to visit her, Dr. Lawrence explained some of the physical characteristics that suggested his diagnosis of Trisomy 21, though a blood test would later confirm it medically:



- Her ears are very small and are low on her head. Your and my ears are about level with our eyes at the top. Hers are much lower and are tiny!

- Her eyes are almond-shaped.

- She has a deep crease across the palm of her hand.

- She has a "pocket" on the roof of her mouth. If I stick my small finger in there, I can feel this upward indentation.

- Her nipples are very small and are spread wider on her chest than is typical.

- There is a defined "nuchal fold" on the back of her neck, which one of John's Facebook friends lovingly referred to as "hot dog neck." This is one indicator of Down syndrome that can be present in ultrasounds. ** Update: this has all but disappeared in her first couple weeks of life.

- She has weak muscle tone. (Though I am often amazed at how strong she seems!) ** Update: Mirabel's neck is still quite floppy, but during tummy time we are all very impressed with how high she lifts her head! She can also turn it side to side at three weeks!

In my research, I'm noticing other physical characteristics that are commonplace in the diagnosis, like a large space between her first and second toes. She will also likely have a smaller than normal head and stature. Isn't this all so interesting? The things that one teensy extra chromosome can do.

Both the physical and intellectual implications of Down syndrome are all across the board with every single individual, and there is no way to really know how intellectually affected Mirabel will be. I do know that she is full of surprises, though, and I do know that she will continue to amaze us all.

Mirabel has jaundice and is under the bilirubin lights.
** Update: Mirabel was in her "tanning bed" for 3 days. She hated it.
It was one of the hardest things for me to see.

Holland

A friend sent me this story the day after Mirabel was born. I've seen it several times since, and I do find it so beautiful and appropriate. And I can't wait to explore Holland.

Welcome to Holland:
c 1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

...it's a girl!

Introducing...

Mirabel Ruby

January 15, 2010

4:53 a.m.

8 lbs 6 oz

19" long

*

Mirabel: 1) Lovely; 2) Wonderous; 3) Of uncommon beauty; 4) Worthy of admiration

*

Ruby: John's late maternal grandmother

*

Mirabel is here! A thing of beauty, a joy forever, and a very unexpected blessing. Mirabel has Down syndrome, and will be in the NICU for a short while to address some oxygen and digestion issues. She is a sweet, miraculous baby. We are overwhelmed and overjoyed. More to come.

girl talk

So in the space of a couple weeks, I received a very clear message that John and I are to expect another girl. I had a couple people say something along the lines of, "You're having another girl, right?"; I had a very vivid dream about a little girl; my best friend Kelly, who is one of the most intuitive peoploe I know, had a dream about a girl (and in this dream John and I were wearing panda costumes, so we'll have to see what that means); and perhaps most convincingly (for them): my sister- and brother-in-law did the "ring test," in which they held John's ring above my belly on a piece of my hair, and the ring immediately started turning in circles. According to Teresa, this scientific test is, like, 90% correct, and she and Matthew immediately were convinced that I am indeed carrying another female offspring. Matthew even bet me $100 that we would soon be welcoming a girl.

I took the bet. I mean, 50/50 odds, right? And, I want to see if my instincts this time are correct at all. I know I thought Luciya was a boy, too, but.... well. Two weeks from today is the due date, so.... we shall see!!

Anyway, we've also begun a poll, and I want everyone to chime in on their thoughts and feelings! There are prizes involved, people.

In comments, please list:

Your Name
Baby's DOB
Sex
Weight
Length
Time of Birth

** Reference: Due date is 1/24. Luciya was 12 days late and weighed 8 lbs 6 oz and was 21 inches long.

Let the guessing begin!!

xo

well, all of it is pretty cute

Dada: Luciya, what's the cutest part of your body?

Luciya: (pointing) My 'gina.

a year in the life

This was my first attempt at movie-making on the computer. It's amazing to look back on the past year, and to reflect on how quickly it flew by. A miscarriage, travels, new businesses, starting school, family time, another pregnancy... and that's just scratching the surface!

new year, new hope

Three weeks to go...!

the luster of midday

Okay, so I realize there is a lot of posting to catch up on, but I just put my snuggly little girl to bed ("seet deems I love you nigh-night"), the house is quiet (John's working), and outside the fresh snow is reflecting the New Year's Eve full moon. I hope everyone has experienced moonlight on snowfall - there is a crisp fullness to the dark air that is like inhaling a little slice of peace pie. I'm inspired to copy a poem I wrote from our first winter here, two years ago, and then cozy up by the fire and breathe for a bit.

Happy, happy New Year. May the hope that this evening brings inspire you and guide you to a year full of all the sweet goodness you deserve. Bless.

Ten pm and the atmosphere's brighter than dawn
From my window I see the whole length of the lawn

The clouds reflect Christmas lights, giving a glow
To the soft-fallen, still, crisp, and lightly packed snow

It quilts frozen ground in a powdery blanket
If I could I'd embrace the cold earth, and I'd thank it

For showing me grace and my breath on the air
Which carries whispers of appreciative prayer

As a child I'd look through the pane past my reflection
To the stillness and wonder of snow's clean perfection

And here we are now in our home safe and warm
As the earth holds its winter breath after a storm

And the peace that has settled gives my heart quiet thrill
Now the snow has stopped falling and the white land is still
Still.

bump watch - 34 weeks

More attempts at self-portraiture. John and I are headed to the cabin for a little r&r this weekend; hopefully we can find time to take some proper belly shots. Documentation, I say!






There's a baby in there!!!!!

seeing is believing

Dada: "What does Santa say?"

Luciya: "Oh - oh - ooooooooohhh!"

Dada: "Where does Santa live?"

Luciya: "At Mall."

school daze

Well. Somebody went to her first day of preschool yesterday.

We've been researching and debating for a few months now, since both businesses have been keeping us so busy (a great thing), and August-December will be here before we know it, and Luciya could stand to benefit from some social interaction and structure.

A couple months ago we visited two preschools near our home, first a small Montessori-based one and then a popular daycare center. John later said it was like dining at Gary Denko in San Francisco and then going to Denny's. At the Montessori, we were shocked to see Luciya sit with the other children and use a "manipulative" in which she transferred grains of rice from one bowl to another with a pair of tweezers. Say what?! Yeah, she totally did. Quietly. Then, when we visited the daycare, it was dark and dank and smelly and the children were running buck wild. The 3-year-old group teacher was just coming in from a smoke break (!) and didn't even offer us a tour of the classroom. That, along with the fact that we know the owners of the Montessori, kind of sealed the deal for us, and we've been budgeting and sitting on the idea for two months now.

And then, we decided to just try it out. Here she is before heading to school for her FIRST DAY:


Someone has her own cubby!


We hung out for a little while (I wanted to stay all day), and she immediately got swept up in the activities that were going on, and I immediately started blubbering like an idiot. John led me out. She waved goodbye to us from the window:

John took me to get a latte, and then he had to go work a double at the restaurant. I came home, had explosive diarrhea, and then sat on the couch staring out the window, sipping my latte, for a good 15 minutes.

I finally sprang into action and scrubbed the kitchen sink, cleaned the fish bowl, did a few loads of laundry, finished up some paperwork, and forced myself not to watch the clock. A meeting I had scheduled for that morning canceled at the last minute, so I was able to pick her up from school at 11:40 on the button.

And here she is. She greeted me with "Take a picture of me!"

She received a glowing review - it will take some time to get her used to the routine, and she is the youngest in the school, but the lead teacher seems confident it's a good fit.

She did it! I did it. WE did it. And that evening we were serenaded by the most stunning full moon.

We'll be trying this four mornings a week, for 2 1/2 hours each day. Exciting stuff.

eLLe: 31 months

Dear Luciya,

What' s up angel?

You little talkie-talkerson, smirky floozy, helper girl with a heart of gold and a smile for days?

What a fantastic monkey you've been lately. After a spell of not napping for a few weeks, you're right back at it (yay!). Your ability to carry on conversations means less tantrums and "no, no, noooo"s (hoorah!). There has been peace in the house, and your little sponge of a person really carries that into life (ahhhh).

You're silly and funny and tickly and smart. You're still brazen and demanding and independent and wily, but the deliberate tomfoolery has subsided a lot.

It's been really chilly outside, so we've been finding indoor activities to occupy our time. Which means, for the most part: cooking. We've used many of the leftover pumpkins from Halloween and have thus far made pumpkin seeds, pumpkin soup, pumpkin pie, and gingersnap pumpkin dessert. I got a crock pot on sale and it's been one of the best things to happen to our little family of three.

You are getting excited about August-December's (your name for the new baby) arrival, and we spend time talking about how you're going to be such a good big sister. ("I hold baby like dis, his toes on my elbow." "Baby will cry and cry and I hold baby." "He's so little!" "Baby's in my piko!" ) Occasionally, out of the blue, you'll announce "I a big sissah!"

Your memory is phenomenal, and impresses your daddy and me on a daily basis. A couple of weeks ago, you had to accompany me to the midwife's office for an hour-long glucose test. You were so good, for having to be there for an hour, and a few days later we were driving down the connector, in a totally different direction from where we'd gone to the doctor's office near the hospital. We were passing the hospital when you said, "Dat's where mama's doctor is!" Seriously? You've been there once, days ealier, from the opposite direction on the other side of the building! (Thankfully, the glucose test was fine, and I won't have to return for the 3-hour test, like I did when I was pregnant with you.)

Your daddy calls this the "Grandma Ruby" face.

Our days have been filled with snuggles and creativity and exploration and stuffed animals and long talks and little walks and Stroller Strides and baby prep and helping and high fives and knuckles and piko kisses and Elmo (gulp!) and dress up and bear hugs and enjoying every step of this fun little life. It just keeps getting better.

I love you, Luciya!

Love,

Mama