I Had No Idea......

The month of October was Down Syndrome Awareness month.  And, like anything else in need of "awareness," people are often largely unaware until it somehow affects them.  Ignorance is bliss, after all.

And ignorant I was when it came to Down Syndrome.  Other than occasionally seeing children or adults in public here and there, I have never really had much exposure to it. In fact, I often deliberately avoided exposure.  Even while going to school to acquire my elementary teacher's license, I largely steered clear of any special education classes.  I was, admittedly, as ignorant as they come, and often by choice.

But then came our baby girl with her extra chromosome, and my fearful reaction was directly related to my ignorance.  I had no idea what we were being handed.  None.

We saw what the world largely sees: the child who would be completely dependent upon us for life; the child who others would shy away from; the child with the diagnosis that doctors discovered "too late to do something about;" the child who would have trouble learning; and we'd forever be labeled as the family with the "Down's kid."

Now here we are, at the end of Down Syndrome Awareness month and the end of Annie's first year of life (so hard to believe!!!), and although we've only just begun, I want to share some of the things we've learned along the way.  I want you to be aware of what you're missing when you don't know someone like Annie.

Down Syndrome is the most common chromosomal defect, affecting some 400,000 people.  Nearly 6,000 people are born with DS each year (nearly 1 in 700 births).  It is a condition in which a person has an extra chromosome.    While a typical person has 46 chromosomes, people with Down Syndrome have an extra copy of chromosome 21.   It is also referred to as Trisomy ("extra copy") 21. This extra chromosome changes how the baby’s body and brain develop, which causes both mental and physical challenges that range in degree.  (National Down Syndrome Society (NDSS))

People with Down Syndrome are at greater risk for certain health conditions than the general population, including heart defects (Annie's is an AVSD defect, successfully repaired 7 months ago!); blood diseases (especially leukemia); Alzheimers; Autism, ear, nose and throat issues; gastrointestinal tract disorders, and others.  Thanks be to God her heart looks good, and she has had no other health concerns thusfar. 

Some of the physical features common with Down Syndrome are:

* An overall smaller stature and shorter limbs.  Finding clothes that fit right is definitely going to be a challenge (join the club, Annie girl!  Short like your Mama!)  She's still in 3-6 month clothes (almost ready to move to 9 month though!  yay!), and sometimes the sleeves are still too long!

*A flattened face, especially the bridge of the nose.  Sometimes you can really notice this on Annie, and other times not so much.  It was her lack of nasal bone/bridge that was one of the red flags of her Down Syndrome during my ultrasounds.  I for one LOVE her little button nose!!

*Almond-shaped eyes that slant up, and tiny white spots on the iris (the colored part of the eye).  Her eyes are among my favorite features.  (well, to be honest, I love the whole package!)  They literally sparkle sometimes, and her penetrating looks communicate volumes!  See those dots??  They're like diamonds!  The girls got BLING! 

* A short neck

* Small ears.  I've never see ears like hers, and a photo doesn't do them justice.  You have to see them in person.  I'm not sure her little lobes could be pierced, even if we wanted to!  They are so teeny. (but soooooo darn cute!) 

* A tongue that tends to stick out of the mouth.  Every once in a while, I will catch Annie with her tongue out (their tongues tend to be larger), but I have to say, I'm not concerned about it yet. We've been told we are lucky with how well she eats.  She has always been good at "chewing" her food, doesn't gag, and doesn't have any texture aversions (other common issues associated with the larger tongue).  It's often the tongue that impacts poor speech development as well as the weak muscle tone around the face. Only time will tell....but for now, I think her tongue is a,wfully cute.  (Think I like this child??  This coming from the woman who was AFRAID of Down Syndrome??)

* Small feet and hands, a single line across the palm of the hand (palmar crease), and small pinky fingers that sometimes curve toward the thumb (can't see it in the pic, but it's there!)  The little feet part is rather ironic in this family, since a signature sign of our children are their large feet (their dad wears a 13!)  Our 11 year old son wears a men's 8 already, and showing no signs of slowing.  Annie?  Still wears infant size 2.  Teeny tiny feet.  Her second toe in her left foot has a little kink in it too.  If she ever keeps still long enough, I'll get a picture of it!  And I love her short little fingers.  Here is her little hand (blurry, again because it's always in motion), sporting her Down Syndrome Awareness bracelet!  All of her fingers are the same length.  Each of her perfect imperfections are simply adorable.

* Poor muscle tone or loose joints.  The girl is like Gumby!  This is her favorite sleeping position.  I tell you, she's like a potato bug--folds right in half when she's had enough.  But this is not necessarily a great feature, or one that means she'll be the next Mary Lou Retton (wait...Do people know who she is anymore, or am I getting old?) 

Hypotonia (the fancy term for low tone) causes delays in gross motor skills (Annie started sitting at nine months and has only started crawling in the last week or so), fine motor skills (grasping small objects), a decrease in strength (Annie has always had a weaker upper body, which is why crawling has been difficult.  She'd get up on her knees, her arms would give out, and she'd face plant.), lower endurance, and speech difficulties (again, tbd...but she already sees a speech therapist, and has a nifty vibrating contraption that we use daily to stimulate the muscles around her mouth. She says "ba-ba" "ma-ma" and makes a Chewbaka-like noise when she's really excited)!)  She also continues to sees her PT once a week.

 

Check out these awesome pants she gets to wear! They are tight fitting and sewn together to the knees, to help keep her hips in line.  She's not a fan, but they've definitely helped!  I tell her they're like skinny jeans, only shorts!  ;)

 

.....and perhaps one of the most interesting (and surprising) developmental delays that we've learned is the eruption (or lack thereof) of teeth!  It's not unheard of for these kiddos to be 2 before they get their first tooth (Annie doesn't have any yet, and none on the horizon), and they often come in random order.  I read about one little girl whose first tooth was a molar!  Wow-za! That takes teething pain to a whole new level!!  But for now, I love this little gummy smile!!!

 

 

 You see, kiddos with DS (and they are kiddos with DS, not DS kiddos!  DS does NOT define Annie) will develop like any other typical kid, just at a little slower pace.  They are more alike than different.  And with 6 children and a pretty fast-paced life, I've rather enjoyed slowing down and keeping my baby a baby just a little while longer.....and celebrating every new milestone along the way. 



 

As I've said in previous posts, it's a great time for people with Down Syndrome.  Although there's always room to improve (and lets start with choosing LIFE for goodness sake!!!), many people with Down Syndrome these days are going on to receive post-secondary education, secure jobs, live independently or in group homes, and even get married (how convenient that her friend Vincent was born just 5 days after her....just sayin')  But even if Annie IS with us forever, what an honor and a privilege to be able to help our child.  God willing, her family will always be here for her, in whatever capacity she needs.  

Annie girl, you are my life's greatest teacher.  I had no idea what I was missing.......

Happy Fall, Happy Halloween, and Happy Down Syndrome Awareness Month from our family to yours!

 

 

  

That's Life

It has been a while since I've sat down to write.....I sort of took the summer off, from everything!  (Well, except for laundry, unfortunately.  Gosh that'd be nice though, wouldn't it?)  With the exception of the library's Summer Reading Club, and the two older boys playing baseball for our community league (on the same team!  bonus!!), I made a point to sign the kids up for, well, nothing!  No camps.  No clinics.  No classes.  NOthing.  And while perhaps I damaged their chances of making a team, or becoming a world-class athlete, actress, dancer, or artist, I suspect they'll be okay.  We needed it.  We needed the calm.  Most days, our biggest decision was whether to swim at the pool or the lake.  We made our own fun. We had a great family vacation, and Matt and I even escaped for a weekend without kids.  All in all it was a good summer, much different from the dark days of last summer, when I was not only mourning my mom, but the daughter I thought we were having......This summer was about life.

Now, 3.5 kids are back to school (by 3.5 I mean 3 go full time, 1 half-day) and we are back to the routine (still including laundry), and I'm ready to get back to writing.  Annie continues to do well, and I will update you on all of her progress soon!  But first, I want to dive a little deeper into that very subject of life.

 These two "Crazy" (adorable) kiddos are wondering where all the noise went??

So fellow Mamas: Have you ever noticed that while you're pregnant, it seems like everyone around you is pregnant? You notice new and expectant mothers everywhere, because you are one of them.  You now have a stake in the game.

And so it goes when you have a child with a disability.  People I never noticed before, or once shied away from out of fear and ignorance, I now see and understand.  Articles I may have scrolled past on social media sites, now beg to be read.  Ready or not, I have been immersed into a whole new world.

And if I expect Annie to be immersed in the world of her "typical" family and peers, I need to likewise make myself a part of hers; the good, the bad and the ugly.....

There is so much good happening for people with DS these days, and it gives me such hope for Annie!  These children and adults are soaring in ways that were once thought impossible.  One boy has opened his own restaurant!  I'd love to eat here someday!  (http://timsplaceabq.com/about-tim) One woman, Karen Gaffney, is the first person with Down Syndrome to receive an honorary doctorate, and she swam the English Channel on more than one occasion. (http://www.karengaffneyfoundation.com/)

But there's an ugly truth about Down Syndrome too.  I've said it in previous posts and I'll say it again: 90% of mothers who learn of the diagnosis while pregnant, choose to abort the child.  9 out of 10 people believe it's better for the child not to be born!  There is a whole population of "Annie's" who have never been given a chance at life!

"No one wants a disabled child!"
(http://www.telegraph.co.uk/news/worldnews/australiaandthepacific/australia/11024890/Australian-couple-say-they-would-have-preferred-to-abort-Baby-Gammy.html)

"It's immoral not to abort babies with Down Syndrome."
(http://www.lifesitenews.com/news/breaking-richard-dawkins-choosing-not-to-abort-baby-with-down-syndrome-is-i)

"I don't want MY child in a classroom with those kind of kids!" (likely happens in a school near you....)

I have always considered myself pro-life. I firmly believe that every life is sacred and willed by God.  I've traveled to Washington D.C for the March for Life, and I've stood outside a local abortion clinic in peaceful prayer.  I could never understand why a mother wouldn't want her child, nor could I comprehend over 50 million souls, gone.  But the problem often seems too overwhelming to ever be solved by the likes of me.  I am, afterall, just one body in a sea of people.  What difference does it make if I am there or not?  And while standing there among like-minded people may seem easy, taking a stand is not always comfortable.  I have often grown complacent.  What if my views offend someone I care about?  I didn't ever really have a stake in the game.  It wasn't personal.

But now, it is.

Because of Annie, this fight has become very personal.  It's about 50 million souls, and it's about 1 soul.  Because of Annie, I now understand the fear of a pregnancy that didn't go as planned.  Because of Annie, I know what it feels like to doubt that you have what it takes to raise a child.  I mourned the child I thought we were having.  I cried and drew inward.  I shook my fist in anger and raged,

"I don't want to do this!!!!"

But now...  Now I look into this stunning face every day, with her infectious smile, and wonder:

"What was I so afraid of?"

"Why did I beg God to choose someone else for this child?"

 

"Why did I think I was in this all alone?" 

 

And every day I look deep into those almond-shaped eyes and wonder,
"How did we get here? 
How did we get to a point that there are people who actually believe children like mine are better off dead?"

 

Father, forgive us, for we know not what we do.........

If you feel the pro-life issue is irrelevant in your life, or if, like me, you feel your voice doesn't really make a difference, or if you simply feel it's not your place to interfere, I urge you to step off of the sidelines and get in the game.  Make it personal.  Make it about one life that has touched you.  Learn the stories, the good ones and the ugly ones, and read them as though they're written solely about someone you love.  Imagine if someone believed your child wasn't worthy of life; that their life wasn't of value.  Who gets to decide that?  Why has life become such a polarizing, divisive issue?   

And don't ever underestimate the power you have to move, change or soften someone's heart.  If you know of someone struggling with an unwanted pregnancy, or who has been given a devastating diagnosis, be there.  Listen.  Pray.  Love.   I cannot even begin to express how much of an impact the love and support of others has had on our journey.  From the moment we learned the news last August, people began praying for and loving Annie, even when I found it difficult.  They carried her.  They carried me. 

“The fight for the right to life is not the cause of a special few, but the cause of every man, woman and child who cares not only about his or her own family, but the whole family of man.” – Dr. Mildred Jefferson

Because of Annie, I have had to surrender all of my fears and misunderstandings to God, almost on a daily basis.  He is, after all, the one who knit her together before she was born.  She is His creation, and He alone will take her and make perfection where we only see imperfections.  I witness this every. single. day.  And that, my friends, has been a game changer for me.

Ready or not, the Coach needs you in the game too.....Someone's life depends on it! 

Pray,
Speak,
Read,
Tweet,
Share,
Post,
Like,
Live
LIFE...with all of its perfect imperfections!

In a Relationship

The kids are home for summer break, but it appears I'm still being schooled......

Last week, we met with an intervention team from Help Me Grow.  Help Me Grow is a support program for families of children who are developmentally delayed or disabled. They wanted to get a good picture of who Annie is, what our family is like, and what our dreams and goals are for her over the next three years.  In turn, they will help us tap into the resources and services available to help her reach these goals.  Annie has already been paired with an Intervention Specialist, Angie, whom we love.  She visits with us every other week, and is fast becoming one of Annie's favorite friends.

The team asked me to talk about Annie's birth, how we learned of her disability, what our greatest fears and disappointments were (and in some cases, still are), and what our dreams are for her.   It was pretty much everything I've put into writing, but it was the first time I've actually said some of it out loud to anyone other than Matt.

I shared with them that one of the greatest fears I had was how Annie's disabilities would affect the sister relationship between she and Emma.  Surely, I believed, they would never have anything in common.

I think it's wonderful that our boys have no shortage of brothers.  We have "The Big Boys," and "the Little Boys," with Emma smack dab in the middle of the two sets.  There is no doubt this girl is well insulated when the time comes for teenage boys to start sniffing around.

 

 

 

Many nights, as we lay with the kids at bedtime, Emma would lament, with tears and all: "Everyone has a roommate except me!  Mom and Dad are roommates, Charlie and Jack are roommates, Max and Mason are roommates, but I have no one!"   If it was a ploy to tug at our heartstrings and make us lay with her longer, it worked....for Matt anyway!! 

When I found out we were having a girl, I was most excited to tell Emma that she'd finally be getting a roommate!  And weeks later, when we found out our girl likely had Down Syndrome, I felt most devestated for Emma.  All of my dreams for their sister relationship were crushed.  What those "dreams" were exactly, I still can't even articulate.  All I knew was that Annie was going to be different, so naturally (I thought), so was their relationship. 

Looking back now, I realize that my reaction was exactly the reaction I don't want others to have.....as if Annie was/is somehow less of a human being.   But I can't go back.  The fears I had were real and raw at the time, and now serve as a sobering reminder of how far I've already come in this journey.

What is also real and raw is the love Emma has for her little sister, and the love Annie has for Emma:

 

 

 

 

I do realize that Annie is only 7 months old.  She's a sweet little baby, and you cannot help but love her.  Heck, strangers at Kroger love Annie....I get offers all of the time to take her home!  (Um, no...get away you creeper!)  But there will come a day when Emma will probably change her tune.  I can already hear it now, with tears and all:

 

"Mom, Why do I have to share a room with her??  Why can't I have my own room?"   

 

I can hear it now, because I do hear it....from the boys!  And Emma won't be crying woe-is-me because Annie has Down Syndrome.  It will be because Annie is a curious little toddler who adores her sister and wants to be a part of everything, much to her big sister's dismay.  In other words, they'll be typical siblings. 

 

Yes, I still fear a lot of things with regards to Annie, but I don't worry so much anymore about her relationship with her brothers and sister.  In fact, I believe know that having each other is going to be the best thing for both Annie, and for the other kids. 

 

There is a chance Annie may struggle to speak, but I've no doubt these siblings will learn to communicate in ways more powerful than words could ever express.  There is a real possiblity that Annie may be teased or misunderstood, but it will provide her brothers and sister with opportunity to not only defend their sister, but to become sensitive to, and defenders of, others.  There's a likelihood that Annie will never marry, nor will she have children of her own, but she'll probably make one cool aunt after gowing up with this crew!  

 

All good relationships--siblings, husbands and wives, friends, parent-child, and most especially, our relationship with our Creator--all of them take effort; a conscience, deliberate, sacrificial commitment.  The relationship between Annie and Emma, and our boys, will be no different.  How close they remain will be a result of the effort they put into it, in spite of any differences among them.  And it is up to Matt and I to be their first models of this important commitment.

 

I have 8 brothers and sisters, in-laws, and a whole tribe of nieces, nephews, great-nieces and great-nephews, and we are spread all over the map: Ohio, New York, Virginia, Texas, Nebraska, Illinois, Florida, Alaska, North Carolina, Colorado..... It's rare that we are all home together at the same time (but when we are, Oh is it fun!!)  But with all of the distance, and years, between us, our family remains solid and strong because we are commited to make the effort.  Love of family was instilled in us by our parents, and family unity is still among our Dad's daily prayers for us. 

(And this isn't even everyone!)

 

A few nights ago, Matt had a meeting after supper, so I hauled the kids to the pool for an evening swim.  It was about 8:00 and we were drying off and getting ready to head home when I noticed a little girl with Down Syndrome, probably around 6, cautiously approaching the edge of the diving board.  She was visibly nervous and was signing something to her daddy who was waiting to catch her.  And who was standing up there with her, patiently encouraging her to jump?  Her big sister! 

 

She must have stood with the little girl for 5 minutes, signing back and forth with her, encouraging her, sitting on the edge with her, even practically pushing her in, until she finally jumped!  The older sister cheered and the lifeguard nearly leapt out of her chair and applauded!!  That little girl got out of the pool, marched right back over to the diving board and jumped in again.  It was a beautiful moment in time, and I suspect, a beautiful foreshadowing of what's to come.  Another "God-wink" if you will, assuring me that my dream of a sister for Emma came true through our sweet Annie, and I pray that they, and their brothers, always remain each other's biggest cheerleaders. 

 

Oh how I love my girls!  (and my boys!!)

 

 

 

**********************************

What is Annie up to these days (besides just being happy most of the time?)

 

She is 7 months old now, and weighs 11 lbs 4 oz. ...Still a lightweight, but she's finally moving in the right direction.  Last week was the last week for our visiting nurse. 

 

She loves, loves, loves to eat, and what she eats would make most first-time mother's cringe: spaghetti and meatballs, ice cream, pancakes, mac and cheese...if we're having it, and it's soft, Annie's having it!

 

She's rolling all over the place!  In fact, sometimes I have to look under tables and chairs to find her....

 

She now goes to a rehabilitation facility for her weekly physical therapy, and is still part of the tummy-time study.  She's definitely getting stronger, although we are still working on getting her to put more weight on her arms so she can be ready to crawl.  Next week she will be evaluated by a speech-therapist.  Learning to control the tongue in kids with Down Syndrome is very important in these early months.  Their tongues tend to be larger, therefore make eating and speaking more difficult.  Luckily, she's got the eating motion down-pat! 

 

She loves the water!  Beach or pool, she's not picky!  I've never had a baby who loved being in the water so much!

 

And she loves having her brothers and sister home all day.......Her first summer is off to a great start!

 

Stopping to Smell the Flowers

I'm not sure I've ever really noticed Spring the way I notice it this year.  I look at all of the beautiful colors and new life in our front yard, and it's as though I've prayed without uttering a word.

This was a brutal winter in the midwest, but in many ways, my winter started long before the first snowfall or subzero temperature (or snow day...I lost count somewhere around 15!?).  Between the pregnancy complications, losing my mom, and the crushing blow of Annie's dual-diagnosis, all in one month's time, my heart felt as barren as the winter trees.

       lifeless
            wilting
                 colorless
                       dying.....

But in her half-a-year with us, Annie has helped make me whole again. 

Alive!

She is motivating me to stop and to smell the flowers; to recognize that in order to fully appreciate the brightness of the spring, you have to experience the darkness of the winter. 
 

(Nearly) 11 years ago, when we welcomed our first son, the litany of "milestones" became almost like millstones around my neck.  I found myself meticulously comparing him to what he "should" be doing, and to what other babies his age were doing; rolling over, sitting up, crawling, walking, eating, teething, talking.....it all became like a high stakes game that boiled down to one final question:

"Is my kid like all the rest??"

Charlie was an early walker, got his first tooth at 4 months old, doubled his birth weight by 9 months....right on target, or even early, for most milestones.  All worthy of a "status update" (had it been an option at the time)  But he couldn't talk.  By age 3, while most of our friend's kids were singing the alphabet, reading flashcards, and carrying full conversations, my baby pointed and grunted.  I was petrified that something was wrong with him.  I read up on autism, vaccination side effects, learning disabilities, speech delays...you name it, I Googled it, trying to diagnose my son.

Flash-forward 5 kids, and a whole lot of experiences, later and I'm finally starting to get it.  Why is it that even within our own families, we sometimes get so caught up in what a child should be doing, that we forget to notice, and more importantly to celebrate, what they are doing?

I spent so much time in my own "winter," so frozen in fear over what Annie would not be able to do (or do with great difficulty)  rolling over, sitting up, crawling, walking, eating, teething, talking.....only this time, I didn't have to ask.  They had already told me:

My kid was not like all the rest.

At 6 months old (already!!), Annie can't sit up on her own.  She can't crawl, or even get up on her knees.  She hasn't rolled from her back to her stomach yet.  There aren't any teeth on the horizon (interesting fact I just learned recently, children with Down Syndrome don't often get their first tooth until about 1 year) She weighs less than some newborn babies, and still isn't gaining but maybe an ounce a week. 

But this doesn't bother me so much anymore.   I'm learning to savor the sweet baby that she is, rather than to wish her time away by checking off milestones. 

That's not to say we won't work at reaching them with all that we have.  Annie is one of the hardest workers I know, actually.   She has 3 therapists who see her; one weekly, one biweekly, and one once a month. We log her tummy time every day.  She wears activity monitors for a 24 hour period as part of a study.  She works! And I have no doubt Annie will roll.  Annie will sit.  Annie will walk.  Annie will talk.  Annie will be exactly who God created her to be, and who am I to do anything but to encourage and embrace that?

She makes it so darn easy........

 

 

And let me tell you about Charlie.....Boy did he ever find his voice!  He started talking and he hasn't stopped.  He asks questions that even Suri can't answer!  He's a fantastic student, and just won the top award for an essay he wrote on Ellis Island (which was on display at the Imagination Station!)  I'm not trying to boast about all that my kid knows.....I'm just admitting how little I knew. 

But I do know this: I thank God for all of my little flowers--each blooming, growing, unfolding and blossoming in his/her own time--who put a spring in my step every. single. day.

HEART UPDATE:  It has been a little over 2 months since her surgery, and Annie's latest echocardiogram and EKG showed that heart function is great!  She doesn't see her cardiologist again until July!  Praise God....one less appointment! 

And check out this funny little face she makes lately...she puts her lips together and blows.  We say she's "tooting her own horn."  By all means, toot away, baby!   You've earned it! ;)

 

 

Sorry Seems to Be the Hardest Word

Matt came home from work recently and told me that someone had apologized to him about Annie.

"I just heard your daughter has Down Syndrome.  I'm so sorry!" 

This wasn't our first apology for her.  They've come from all over.  Family.  Friends.  Co-workers. 

I asked him how he responded? (A punch in the face would probably be overreacting, right?). 

He said, "I just told her 'Don't be sorry!  I'm not!  She's the best thing that ever could have happened to us!'"  (I know, I know....I am blessed far more than I deserve with this husband of mine.) 

And a few days ago, a woman from church saw my sister and said, "I just have to ask, is your little niece a Down's baby?   I think she's adorable, but I noticed that a woman behind them last week gasped and looked kind of surprised when she saw Annie." 

I've sensed this same surprise from people when they see her for the first time; when they notice something is different.

Do you have any idea what it does to a mother's heart to hear someone apologize for her baby, or "gasp" at the sight of her child?

What do they mean by it, really, "I'm sorry??"  I'm sorry that your child is (fill in the blank): sick, imperfect, disabled, a challenge, a hardship, different, not what you expected......??

The thing is, I know people probably don't mean it this way.  I know hope they mean well.  I have to believe that they just don't know what to say. 

To those who may feel "sorry" for us, please don't.   Like Matt told his co-worker, we are not sorry!  The thing that makes me sorry is that so many people don't understand the gift that these beautiful children are.  I know I didn't understand it until we had her! 

The world may not always consider her as smart, but in her first (almost) 6 months, Annie is already becoming my greatest teacher.  She is:

    Refining me. 
    Realigning my priorities.
    Arising in me a new (com)passion and awareness.
    Pulling me away from the frivolity of this world.
    Eriching our family's life. 
    Bringing out strength I never knew I had.  
    Transforming my "I cant's" into "I can and I must."
    Redefining beauty and perfection. 
    Drawing Matt and I closer, to each other and to Him who strengthens us.

If she's anything like her big sister, Annie will love baby dolls and princesses, painting nails and dressing up, hairbows and headbands (all of which, by the way, mysteriously go to "hair accessory Heaven" after only one wearing.  every. single. time.), tutus and dance.  She will love cars and trucks, lightsabers and legos, basketball and tractor rides because, after all, she has 4 big brothers.  And if she's at all like her Mom and Dad, she will love to eat.  She already does.

 

 

 

Above all, Annie will love, and her ability to love and to be loved makes her no different than you and me.  No different. 

Maybe I "gasp" a little when I see her too, because I am in awe of her strength and her beauty.  Her potential.  Her wisdom beyond her years.  And maybe that's what that woman behind us in Church saw too.

I gasp, and I am sorry, for ever doubting her and for continually doubting myself. 

My sweet baby girl, we have only just begun. We have only just begun to experience the heartache this world often brings, and we have only just begun to experience the love and joy you bring. 

Good news is, love and joy will always win in the end. 

Always.

A 6 week post-surgery update:  Annie is doing fantastic!  She was able to come off of her Lovenox shots early (the blood thinner), so she is officially medication FREE now!!!  She has gained one pound since surgery (only 3 since birth!), making her a whopping 9lbs, 10oz as of yesterday....our little "Thumbelina!"  She meets more consistently with her physical therapist and intervention team now, and is showing great improvements in her reaching, grasping, and head control. 

Most importantly, she is HAPPY!!! 

Hail to Our Little Victor!

Wednesday, March 5th- Annie's heart-mending day! 

We had to report to pre-op at 6:30 a.m.  It's no exaggeration when I say Annie has gotten up in the middle of the night maybe 6 times in her 4 months of life.  (And before you fellow mamas of newborns start lynching me, remember that I do have five other children.  I'm no stranger to agonizing nights and wishing coffee could be administered rather than poured.  I AM STILL ONE OF YOU!!!)   

Anyway, I digress......So the night before surgery she was not able to have formula after 4 a.m.  Matt and I debated whether or not to wake her, since we couldn't feed her once she woke up in the morning.  We ultimately decided against it since she never gets up to eat.  Ugh, call it her 6th sense (she has an extra chromosome, so why not an extra sense too, right??) but wouldn't you know, this child woke up ravenous at 5 a.m.  Inconsolable!  As a result of her fasting (or maybe because they put her in a blue hospital gown when the girl would much rather have pink!), this was her demeanor during her pre-op exam:

We signed the official consent to surgery (gasp!), were introduced to some of the anesthesia team, and met Annie's surgeon, Dr. Richard Ohye (Oh-Yay!), for the first time.  Let me tell you, as a person who in her youth used to be "star-struck" by celebrities, meeting this man left me "awe-struck" in a whole new way.  Shaking the hand of the man who is going to be holding and repairing your daughter's heart?  Pretty powerful stuff.  Suddenly meeting Regis Philbin (yep, I sure did!  Don't be jealous!) and years of perusing through People Magazine seemed sooooo unimpressive!  This man's gift?  Now that is impressive!

 

Dr. Ohye went over the details of her surgery again (another one of those "steak" moments I spoke of earlier!)  Annie has a complete AVSD defect, which essentially means she has 2 holes (in the upper and lower chambers) and a common valve where there should be 2.  He explained that the work on the valve would be the more complicated part of the surgery. If they aren't precise in the separation, there is a risk for too much leaking, or a valve prolapse. They actually use gore-tex (yes, the same heavy-duty, waterproof material used for rain gear and boots!) to patch the hole in the bottom chamber (ventricle), and some of her own heart tissue, her epicardiam, is used to repair the top (the atrium).  Both patches will last her lifetime.  Amazing.

At 7:30 the anesthesia nurses came to get Annie.  As they walked away with her, Matt cried and I went numb.  She was out of our hands now, and in the hands of trusted doctors and nurses.  But I felt a certain peace too, because I knew we were all in God's hands.  And I could  feel the spirit of my own mom, who was no stranger to heart surgery, assuring me she would be ok. 

And so we went to wait for Annie......

About 2 hours later, a nurse came to give us the first report.  Annie was doing great!  She was now on the heart-bypass machine and Dr. Ohye had started the repairs at about 9:00.  At 11:30 she came back to report that he was finishing the repairs, and by 12:30 Annie was off the bypass- machine and they were closing her chest.  Dr. Ohye came in afterward to tell us the surgery was a success, the holes were patched, her valves were functioning great with minimal leakage, and we would be able to see our little victor around 2:00. 

In a matter of 5 hours our daughter's heart had been stopped, repaired and restarted.  And in some ways, so had ours.

Here was our first look at Annie, a moment more precious to me than the day she was born:



 

Matt's parents, my sister and brother-in-law, our parish priests, and a good friend were there with us in those early moments after surgery.  It also happened to be Ash Wednesday, so Father administered ashes to Matt and I, and anointed sweet Annie. 

 

The Holy Spirit was alive in that ICU! 

 

Our pastor, Father Keith, has seen our family through some difficult times lately, and we are grateful for his friendship.  Our entire parish community has been a tremendous beacon of love, support and prayer.  It is truly one of our life's greatest blessings. 





Later that night, Annie Face-Timed with her brothers and sister:

 

 and finally had her first bottle since the night before:

 

 

Thursday, March 6, Day 3:  Good News!  Annie had a great night and was able to move out of ICU (already!) and into her own room! 

 

Bad news?  She was having a reaction to the morphine and was horribly itchy, puffy and blotchy.  She was miserable!  Poor baby.

 

 

Matt's Aunt and Uncle visited with us for the afternoon, which was a welcome distraction.  Annie was still pretty out of it, but you could sense she recognized our voices and touch. 

 

Later in the day she was beginning to be more alert and I finally held her!  Boy did that feel good. 

 



Friday, March 7-Day 4   She had another good night, and by mid-afternoon, our sweet Annie was back!  Her eyes were no longer glazed over, and she was "talking" up a storm!  Her nurses got the biggest kick out of her!  The fluid output from her chest tube was really decreasing, so they were hopeful that it could be removed on Saturday.  Once the tube was out for 24 hours, barring any other issues, Annie could potentially go home on Sunday!  This was all going so smoothly....and so fast....almost too good to be true!?

 

 

 Having a great "talk" with Daddy....."What's all the fuss?"



 

 

Saturday, March 8- Day 5.  Annie ended up having more fluid output through the night, which meant her chest tube would stay in at least one more day. (We were actually ok with this.  As much as we wanted to get home, the thought of leaving too soon also made us a little nervous!) 

 

This day was filled with some more wonderful visitors, including Annie's brothers and sister! Mott Children's Hospital is a fantastic place for siblings!  It was like a mini-vacation for the kids!

 

 Admiring Uncle Tim's tan!

 

 Happy to be in Grandma's arms

 

Some lovin' from my Dad (and no doubt my Mom too!) 

There is a big family center/play room for siblings with daily organized activities.  A Child-Life employee helped the kids build their own "hospital bear."  They talked about Annie's surgery and some of the things they saw on her or in her room, and got to put replicas on their bears (nasal cannula's, scar dressing, chest tube, IV ports, blood pressure cuffs...)  So cute!

 

Doctors Charlie, Jack, Emma and Max with their patients. 

(Mason preferred to play with the abundance of toys!)

There was also a big indoor playground!

It was nice to have all of us together again!

Later that evening some good friends from home visited.  They had some Annie-time, and then we went out for a nice, kid-free dinner (they have 4 of their own!) in downtown Ann Arbor.  Matt and I definitely got a good taste (literally!) of Ann Arbor restaurants by the end of our stay.

 

At about 10:00 that night, we noticed Annie's heart rate starting to soar. She typically hovers in the lower 120s, and it was steadily climbing in the 150s, 60s....we even saw it get into the 190s! She was also running a fever, and with fever comes the fear of infection. New antibiotics were administered (she was already on some from the surgery), blood cultures were ordered and x- rays were taken. It was discovered that she had a very small pneumothorax in her right lung (a pocket of air around the lung, causing part of the lung to "collapse") They put her back on oxygen in the hopes of helping relieve the pressure in the lungs, and said they would do another x-ray in the morning. Tylenol helped to bring the fever down, and by the time we left her for the night, her heart rate had also stabilized. She was sleeping and comfortable.

 

 

Sunday, March 9-Day 6   The hotel Matt and I stayed in was attached to the hospital.  It worked out great not having to leave the hospital and worry about parking every day.  We would stay in Annie's room until midnight (shift change), then head down to our room to try and get some decent rest.  The "bed" available for us in her room was more like a plastic love seat, likely made from the same gor-tex material they use to mend hearts!  Lol! (sort of) We would come back in the mornings around 8:00 (which was also shift change) so we could be updated when they did morning rounds with a nurse practitioner, dietitian, cardiologist, pharmacist, respiratory therapist, and case worker. 

  

When we got back for rounds Sunday morning, they said her fluid output overnight had been minimal and that her chest tube was able to come out today (Hooray! She would be so much easier to hold!)  Then they took her down for another x-ray (Boo! Enough with the chest x-rays already!) to check the pneumothorax.

Can you understand now why I hate watching these??

 

They discovered that the pneumothorax had actually gotten much bigger, and she was going to need a mediastinal tube (all of these "big" terms we were learning!!) to release the air from around the lung.  Turned out we were trading one tube for another.  Annie was taken down to ICU for the procedures, and we were sent back to the waiting room. 

 

For some reason, I began feeling more anxiety at this point than I had during her surgery!  This was a rather simple procedure in the scheme of things, but I had such pit in my stomach.  Maybe it was because we were expecting and prepared for the surgery, whereas this was a surprise; our smooth sail had suddenly gone off course!  Or maybe I was just getting tired.  Whatever it was, I sure was happy to see her when it was over! 

 

Another tube in her little body.  Ugh..... But at least the big chest tube was now out!! 

My sweet, brave girl....

Later that evening we went to Mass at the beautiful St Thomas the Apostle Church.  During Communion they sang one of my favorite Matt Maher songs, "Lord I Need You;" a song that I had played over and over at home as I prepared for this week.  Once again I felt enveloped in God's grace and peace (not that it had ever left me, but so many times I forget to draw upon it!)  God is so good to us.  And boy do I need Him.  All. the. time. 

 

 

Monday, March 10 - Day 7  Other than another chest x-ray in the morning (seriously, make it stop!!!), this was a good and uneventful day.  Annie actually loved the walks to and from the x-ray department.  We could take her in a stroller now that she was unplugged from everything except the tube in her lung!  Her lungs looked nice and inflated so they anticipated removing the tube on Tuesday.  This meant we could likely go home on Wednesday!  We were ready!!

 

 

My sister brought the kids up to visit again after school.  I can't begin to convey the love and gratitude we have for her.  She managed our whole crew, and their (mountains of) laundry, and (constant) meals, and (dreaded) homework, and (hectic) schedules....while we were up at the hospital for these 2 weeks.  Not an easy task, even for those of us in the trenches every day!  It took such a load off knowing our kids were being loved and cared for when we couldn't be there, not to mention she has been one of Annie's fiercest prayer warriors.  Our Mom would be is proud. 

 Sibling love.....

 

We got away from the hospital for a bit and went to The Pizza House with Vincent's family....(another great restaurant to add to our list, and waistline!)

And we enjoyed walking the halls with both Annie and Vincent later that evening!  It felt soooo good to get them out of their rooms!!

 

 Annie and Daddy coming up with an exit-strategy....

 

Tuesday, March 11-Day 8  After her morning x-ray, they determined that Annie's tube could come out (Hooray!)   She was now 100% unplugged (and could wear her own, pink, clothes!!)  And if she was still clear tomorrow, maybe HOME??

 



 



Wednesday, March 12-Day 9   Guess what we woke up to???  More snow!  And another snow day (#14!) for the kids back home.  Poor Mary.  Did I mention how much I appreciate her??  It did make being stuck in the hospital a little more bearable though.  Who wanted to go out in this??



 

And yes, I said stuck.  Although Annie's (final!) x-ray showed clear lungs, she wasn't going home as we hoped........ Overnight, her foot had become a deep purple in color and her nurse had difficulty finding a pulse.  They ran a Doppler over it and determined she had blood clots in her left leg and foot.  Ugh. They started her on shots of Lovenox (a drug similar to Heparin, a blood thinner) twice a day for 6 weeks.  We had to wait until Thursday to check her blood levels from the Lovenox before she could be released.  Too high of a level meant a risk for bleeding, too low meant it was virtually doing nothing. 

 

And guess who had to learn to give these shots for the next 6 weeks?  You got it.  Moi.  

 

Whaaaaaaaaaaaaaaaaa!  I had been trying to decide what to do for my Lenten penance.  I think I just found my answer. 

 

 

Thursday, March 12-Day 10   So, were we going home???? They did her blood work at 1:00 a.m.and the answer was....."NO!" (insert wailing and gnashing of teeth!)  Her levels were too low so her dosage had to be adjusted and tested again the next day.  Oh, and our kids had another snow day!  Ugh.

 

We decided to check out of the hotel, and in the hopes of salvaging my sister's sanity, sent Matt home to reclaim our children.  We decided I would just stay in Annie's room and he would sleep at home.  He picked up the kids and brought them back up to the hospital for the day.  They had more time with Annie......

 

 

 .....and swimming at the hotel pool (where Vincent's family was staying), and a pizza party on the top floor of the hospital, and a visit from some U of M athletes.  I'm telling you, they do all they can to make the stay as enjoyable as possible for the families.   

 

 

Friday, March 14-Day 11.  We waited all day to hear what was music to this Mama's ears.....

 

"YOU CAN GO HOME!!" 

 

The only hard part was having to leave behind Vincent and his family.  The good news is, though, he was home a couple of days later and both kids are doing great!

 

We arrived to a barrage of "Welcome Home!" signs made by some very happy brothers and sister! 

 

 

Oh how I love you, my little victor!  

Bless your now-perfect heart! 

And thank you for transforming mine!