Mirabel Ruby blessed our lives on January 15th, 2010. She is a sweet, beautiful, bright-eyed little girl, who joined her older sisters Eryn and Luciya to make our family complete. Mirabel has Down syndrome, and her diagnosis is why we have dedicated this blog to her. It is a lovely and challenging learning process, and we are excited to celebrate her and see her life unfold.
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.
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.
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.
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."
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.
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.