G-tube Gone!! {31 for 21}

Feeding was our nemesis during the first few months of Reese's life.  Her struggles with eating were documented here.  Reese ate like a champ while in the NICU - I think she surprised the entire medical staff with her ability to suck down a bottle.  We were told that infants with Ds often have difficulties with bottle and/or breastfeeding due to low muscle tone in the face & mouth.  I never knew how complicated the suck/swallow/breathe process was until I had a speech therapist explain it in detail.  It's a wonder any of our little ones can eat.  Add a heart defect to the mix and feeding could potentially be very problematic we were told.  Well, Reese continued to dominate her bottles & gained good weight while in the hospital, so little naive me thought we were in the clear.

When feeding was easy

 

And we were, for about a month.  Then gradually Reese started taking less & less at each feeding while also increasing the time spent at the bottle.  Not a good combo.  With heart babies, a single feeding should last no longer than 30 minutes to prevent fatigue & to eliminate the risk of burning too many calories.  Sucking not only requires insane coordination, it's also a bit of a workout.  To complicate things even more, heart babies actually have higher caloric requirements compared to typical babies to compensate for the increased demand on the heart & increased work of breathing.  We were spiraling downhill fast.

Long story short, Reese ended up with a nasogastric tube at 3 months of age.  We still offered her a bottle with each feeding.  She ate what she could & got the rest through the tube.  This was okay for awhile & then it was not.  Not at all okay.  I won't go into detail, partly because it's very medical & partly because it brings back memories of very stressful times where our lives literally revolved around eating & calories & weight gain, but her team decided a G-tube was her best option while awaiting her heart surgery.

 Feeling okay about the tube

 Not so okay with it here

 Dad became a pro at supplemental feedings

So did aunts & cousins

So on February 29th, I packed up our little bundle & headed to Children's Mercy Hospital.  I couldn't decide if having the surgery on Leap Day was good, bad or indifferent.  I don't think of myself as a superstitious person but all bets are off when your flesh & blood is undergoing surgery.  Normally G-tube insertions are very safe & complications are rare, but we were told her unrepaired heart made things slightly tricky.  Reese was accustomed to tricky & she did just fine.
 

 At her pre-op appointment

 The night before surgery - no more tape on that pretty face

 The Handoff - Ugh...

Her new hardware

 



Reese was fed primarily via her G-tube for two full months.  We still offered a bottle at each feeding in hopes of retaining her suck reflex but she could only take a few sips before tuckering out.  I'll be honest, I dreaded meal times.  It was so depressing to see her struggle so much with something that should be so natural.  What should have been moments of bonding became moments of trepidation. We took Reese to an OT who specialized in feeding in hopes of learning some technique, some trick to improve her efforts.  It didn't work.  We put all of our hopes in heart surgery fixing the problem.

Heart surgery came & went.  I begged & pleaded & coerced the physicians to okay a bottle probably before it was time.  I was so excited to watch her gulp it down.  Surely her new & improved ticker would make eating a snap.  Holy bonkers, I couldn't have been more wrong.  She would not let a bottle anywhere near her mouth.  She darn near pulled a Linda Blair trying to avoid the thing  Finally the nurses had to intervene.  "She just doesn't want it & trying to force it will do more harm than good."  So we went home with her completely dependent on her G-tube.  I was defeated.
 

I shouldn't have been so upset.  Her surgery was a huge success.  Heck, she spent 5 days in the hospital when we had been prepared for 2 weeks.  She was pink, she could breathe with ease & she was happy.  But I wanted her to eat.  Was that really so much to ask?

We were told to avoid bottles altogether for a week.  At the crack of dawn on the 8th day, I prepared a 2-ounce bottle & said a little prayer.  Reese practically threw herself at the bottle & 2 ounces was gone in minutes.  I was shocked & amazed & I bawled like a baby.  Two ounces is not much.  You & I could easily gulp it down in seconds.  But it was more than she'd eaten in 6 months & I was hopeful.

She continued to impress & increased her intake to 5 ounces by the end of the week.  By the end of May she was downing 6-ounce bottles & a little voice in my head was wondering if we even needed the darn tube anymore.  Our pediatrician & surgeon & cardiologist all warned us before surgery that we were likely looking at 1-2 years with the tube.  Not that we would be relying exclusively on the thing, but that it might take that long before she was eating & drinking effectively enough on her own.  And it would definitely not be removed before cold/flu season.  The absolute earliest removal date would be March.

Well, in true Reese fashion, she decided to buck authority again, & the G-tube is now history.  Gone.  It was removed roughly 10 hours ago.  It's been a good day.

 Waiting room jitters

 Sissy there to offer support

 Baby makes everything better

 Tube in
 

Warning: Ensuing pictures are slightly graphic.  May want to skip if grossed out by medical stuff. 
 

 Going...

Going...



Gone!!!

 

That little hole is covered with some gauze & should close up completely on it's own.  In the meantime, our little hoover is eating everything in sight.

 



Friends {31 for 21}

A friend is someone who can see the truth and pain in you even when you are fooling everyone else.  -Unknown       

“We'll be Friends Forever, won't we, Pooh?' asked Piglet.  Even longer,' Pooh answered.” - A.A. Milne, Winnie-the-Pooh

I have unbelievable friends.  Trying to articulate how I feel about them is impossible.  I just don't have the words or the eloquence to do them justice.  Let's just say I'm the luckiest girl in the world when it comes to the friend department.  In a perfect world where time was endless & there was no laundry to be done or children to feed or dogs to walk, I would write something about each & every one of you.  But time is precious here in the Wallace household & the laundry pile is spilling out into the hallway, so I will limit my ramblings to just one. 

The one I've known since elementary school.  The one who battled me for first chair in band & who made the "Fortnight - 2 weeks" outburst my claim to fame.  The one who consoled with me when I was dumped by State Champ 4,000 miles from home (just taking a stab at the distance between KC & France) & who corrupted all of us with the infamous "boy-girl" parties.

The one who made Schurz Hall the best damn dorm on Mizzou's campus.  The roommate who tolerated my bizarre study habits & hidden, deteriorating apple cores.

The only one I knew in Chicago when I made the move in 1998.  The one who let me crash at her place & run up ridiculously high phone bills while I was searching for a place of my own.

The one who hosted my bachelorette party while 6 months pregnant & who pretended to be having the time of her life at the smoky, overcrowded bars.

The one who agreed to be a bridesmaid in my wedding at 7 months pregnant.  Doubt you'll be wearing that dress again.

The one who hosted the best baby shower ever when I was pregnant with Reagan.  All baby showers should be DiaperKeggers at Mizzou football games.  Combine beer, barbecue, football & baby paraphernalia & everyone's happy.

When I was 3 weeks pregnant with Reese, I got a call from this giddy friend exclaiming, "I've got 2 pink lines!!".  For the men reading, this means she was knocked up.  It would be a happy occasion on any day, but it was even more special to us since we were both recovering from devastating miscarriages.  We were elated.  We would be fat & miserable together, our kids would be the best of friends, of course they would marry & live happily ever after.  Over the course of those 9 months, we shared everything.  Our fears of losing another pregnancy, our excitement of adding another child to the mix, our worries of being a mother in general, but always our genuine happiness for each other. 

Then Reese was born & everything changed.  I cringe at what I'm about to write, but I promised myself I would be honest about the feelings & emotions I've experienced along this journey.  If I pretended everything was roses from the beginning, our story would ring hollow & it wouldn't be fair to the moms or moms-to-be who might come here for an honest portrayal of our life.  So here it goes.  I was furious with my friend.  I was beyond jealous.  I longed to be her - to be pregnant again.  To be full of anticipation & excitement, not this overwhelming fear & unease.  I was worried she would go MIA.  My friend's baby was still marinating & I had already begun comparing.  Her kid would do everything before Reese & would struggle with nothing & I'd just have to grin & bear it.  I thought about cutting ties completely.

O.M.Goodness.  I shudder when reading those words.  I know they are true, part of me will never forget the intense pain that immediately followed Reese's birth, but I can't believe I let myself envision a world without my friend.  A world where I wasn't overjoyed when her son was born & genuinely happy when he took his first steps & said his first word.  I've thought a lot about those ugly thoughts & for awhile convinced myself I was an awful person.  How could I think those things about my dearest friend?  The friend that would take a bullet for me & practically anyone she knows.  Then it hit me.  I am human.  I was an overwhelmed, terrified, hormonal new mother & was working through my stages of grief.  Being mad & jealous with my friend was part of the healing process.  I have forgiven myself & I hope she forgives me too.

It's amazing what a year can do.  Now I ache for pictures of Lukie on Facebook & updates on his newest antics.  I look forward to our kids growing up together & for the lessons they will teach each other.  I know Lukie will accept Reese for exactly who she is because he has parents who will teach him that all people have value, regardless of chromosome count.  And because he has the genes of two of the kindest, most compassionate people I know.

Wanna know who managed to "just stop by" during a business trip between Oklahoma City & Columbia, MO to visit Reese after her OHS?  Wanna know who routinely texts me asking how Reese is doing & who sent her this onesie for her birthday?

And do you wanna know who cancelled Mizzou Homecoming plans (people, she lives in COMO - they bleed black & gold there) to instead support Reese at our annual Step Up For Down Syndrome Walk?  You guessed it, my friend.

I know you might be wondering what exactly this has to do with Reese & Ds.  If I could give any advice to new parents, it would be to cling to your friends & family.  Don't push them away or pretend that everything is wonderful if, in fact, it is not.  They want to be there for you - they just might not know exactly what to say or are fearful of saying the wrong thing.  You might be worried that your friends will vanish or not accept your newest bundle.  In my opinion, friends like that need to vanish.  We've been fortunate - our friends have welcomed Reese with open arms.  Maybe it's because we've chosen to surround ourselves with amazing people or because it's very hard not to fall in love with Reese or a combination of both.  Either way, our friends rock.

I can only hope all of my children will develop friendships as cherished as mine.  I hope they choose to befriend good, kind folks that will be loyal & honest.  Reagan & Reese are already forging new friendships & I will enjoy watching those relationships develop over the years. 

Moya, this one's for you.  Like I always tell the girls, I love you to the moon and back. 

Expectations {31 for 21}

I'll admit, Ben dealt with Reese's Ds diagnosis much better than I did early on.  He is one of the lucky few who are truly able to live in the now & not worry about the future.  You know where my mind went when we got the news?  I wasn't thinking about her immediate health concerns or the fact that she had been whisked away to the NICU for observation.  I was thinking about dance recitals and birthday parties.  About soccer games and high school dances.  About driver's licenses and independent living.  When I should've been focusing on getting our girl healthy enough to come home, I was worrying about all the things a diagnosis of Down syndrome would prevent her from achieving.  I felt cheated.  Robbed of the life I was expecting.  And as accepting as Ben has been from the get-go, even he looked at me with red-rimmed eyes after hearing the news & said, "what will her life be like?"

It goes to show you how little we knew about Ds.  I honestly can't believe I once had such a limited view of the potential our kids possess.  To even consider a diagnosis of Ds would prevent Reese from making friends or playing sports or pursuing higher education now just seems utterly ridiculous.  We were so under informed, and therefore, we were scared.  Scared that just because Reese was born with extra genetic material, she would live a completely different life than her sister.  That she wouldn't appreciate a good book or savor a juicy steak or be transported by a magical sunset.  That she wouldn't bathe in the love of friends & family or be overwhelmed by an act of kindness by a stranger.  That she, in essence, would suffer.  Nothing makes me crazier than when I read an article about how someone "suffers from" or is "inflicted" with Down syndrome.  Seriously?  Does this look like suffering?

 or this??

 or this??

I know what you might be thinking.  Reese is one - of course she's not suffering.  But what about when she's older & more aware of her differences?  When she realizes it takes her longer to learn certain things & master different tasks.  When she discovers her future path might not resemble that of her peers.  Well, it's late & I'm too tired to search for the exact statistics, but a recent study published results of how adults with Ds view their lives.  An overwhelming majority (I'm talking like 90-something %) are happy with their lives and the way they look.  Could we say the same thing about the general population?  I doubt it. 

So, what exactly do we expect of Reese?

• We expect her to be kind, gracious & respectful.  With that, she will be held to the same standards as her siblings when it comes to manners, behavior & discipline.
• We expect her to discover her passions & cultivate them.  Whether it be sports, dance, music, art, ventriloquy, farbing (you get the picture), we will support & foster her individual interests.
• We expect her to make & maintain friends.  We expect some of those friends will share her designer genes, but we also expect her to befriend her typically-developing peers & those with special needs of a different nature. 
• We expect her to attend school & put forth her very best effort in the classroom.  Whether she spends the majority of her time in a general ed or special ed setting, we expect her to learn.
• We expect her to have crushes on boys...or girls (hey, we are equal opportunity around here) & with the territory we expect her to have her heart broken once or twice. 
• We expect her to show us what she can & cannot do rather than making assumptions about her abilities.  We expect she will fail at certain things but are certain she will excel at more.  If we allow her to be our guide, we expect she will reach the stars. 
• Most of all, we expect her to love & be loved.  This will be the easiest expectation to achieve.

Dancing & Daddy's Girl {31 for 21}

I thought of about a million posts for "D" but finally settled on these two. 

Dancing:  The more individuals I meet with Ds, the more I'm convinced a dancing gene lives on that extra 21st chromosome.  I am not kidding when I say these folks can get down!!  And this is absolutely fine by me since I enjoy a little booty-shaking from time to time.  I think Reese & I are gonna get along just fine.

I've watched a few clips of the dances sponsored by the DSG.  The teenagers & young adults in attendance dance like no one's watching.  They feel the music & simply move.  Reese just recently began busting some moves of her own & I swear sister's got the gift.

Please forgive the exuberant clapping at the end - Reese is not a modest dancer

 



Daddy's Girl:  You would think Reese would prefer the parent who spends ALL day with her.  The parent that bathes her & dresses her in ridiculously cute clothes.  The parent that obediently complies with all of her occupational, physical, & speech therapy assignments.  The parent that reads her favorite books & slips her pieces of chocolate on occasion.  Nope, mom is okay until about 5:00 & then she's chopped liver.  Daddy's home & this girl goes berserk. 

 

Ben & Reese have had a special bond since birth.  While I spent hours researching Ds & heart defects, he spent equal amounts of time just loving & cuddling our precious girl. When I was scheduling doctor's appointments & networking with other parents in the Ds community, he was playing Peek-a-Boo & eliciting Reese's first smiles.  Ben admittedly has never researched anything on Ds.  He says I do enough for both of us & it's probably true.  It's not that he doesn't care - he asks questions & listens intently when I'm telling him something of importance - but he just doesn't sweat the small stuff and I love him for that.  So does Reese. 

 

The Protector

 The Cuddler

Daddy's Girl

 



Children's Mercy Hospital {31 for 21}

I remember doing clinicals at Children's Mercy Hospital (CMH) when I was in nursing school and thinking, "Man, I hope I don't ever have to come here with my kid."  Not because it was a bad hospital - in fact, it's one of the best children's hospitals in the nation - but because I saw the faces of the parents that roamed the hallways.  The faces wore many expressions.  They varied from panicked to hopeful to exhausted to relieved to disbelieving, and the worst, to resigned.  They each had a story, some worse than others, but they all had a common bond.  

Fast forward 8 years & I was one of those parents.  Our first visit to CMH was a blur.  I vaguely remember navigating hallways with my newborn in tow while trying to maintain a stiff upper lip.  CMH is a big place.  A big, scary place for parents who really don't want to be there.  We managed to find the cardiology clinic & I was floored by the number of kids in the waiting room.  I studied the faces of the parents & actually felt a sense of relief.  I was not alone.  Reese was not the only kid in KC with a bad heart & this place was going to fix it.

Reese began her courtship with CMH one year ago this month & they've been an item ever since.  Initially we visited her cardiologist once a month so she could monitor Reese's weight gain & signs/symptoms of heart failure.  As Reese's ticker started to fail, she developed some other problems which necessitated more visits to the hospital & more evaluations by specialists.  Prior to Reese's OHS, she was seen by ENT (Ear, Nose & Throat), Gastroenterology, General Surgery, and of course, Cardiovascular Surgery.  She was hospitalized once in January for an upper respiratory infection...

Doesn't it look like she's in baby jail? 

 



 & then again in February for her G-tube placement (more on that in a later post)...

During her OHS recovery she was seen by Hematology & Nephrology.  Combine the knowledge & expertise of every one of those specialists & you've got a lot of brain power devoted specifically to my daughter's health.

I am not sharing this to elicit pity.  If anything, I consider us lucky.  Lucky that we live 20 minutes from the only institution in a 200-mile radius that could fix every single one of Reese's issues.  Lucky that we had specialists that communicated with one another to ensure Reese got the best, most comprehensive care possible.  Lucky that I never once felt Reese was treated any differently than kids with typical chromosomes.  And so incredibly lucky that our army of specialists has been whittled down to Cardiology & and an annual visit to Opthamology & Audiology.

If I was Warren Buffett, Children's Mercy would be receiving a very substantial donation.  But I'm not, and I'm pretty confident Ben's Powerball addiction won't be fruitful anytime soon, so until then I will just sing their praises to everyone I know. 

Baby {31 for 21}

The word baby applies to Reese's life in many ways:

1. It seems to be her first word...

Reese has been babbling for ages. She's a pro with the D, B & M sounds. Most kids with Ds have speech delays, some profound, so I had no idea when to expect her first word. That's why I was utterly floored when she articulated the word "baby" a few weeks ago. At first I thought it was just her babbling, pure coincidence that it sounded like the real thing. Then she started saying baby when holding her doll & when she saw pictures of babies in books. I was still in denial, or maybe just wanted to make sure it wasn't wishful thinking, until her OT & my mom & Ben's mom & my neighbor all said the same thing, "you know she's saying baby, right?" It's not consistent & she never says it upon request, but it's clear as day when it does slip out.

2. It is, without doubt, her favorite possession...

Reagan had no interest in babies for the first two years of life so imagine my surprise when Reese started forgoing her flashy, colorful, LOUD toys for Reagan's nasty, dingy, half naked baby dolls.  Arms start flapping & smiles morph into crazed expressions of love when a baby comes into view.

 Never far from reach

 

Even more in love with the real deal which is a good thing because...

 

3.  On approximately April 13, 2013, we will be welcoming another baby (the real deal) into the Wallace household...

 

Bumpkin Wallace

 

Yep, I'm knocked up.  Twelve weeks & three days knocked up to be exact. 

No, it was not an accident. 

Yes, I realize my oldest is a bit of a tyrant & my youngest has special needs & it will be crazy & chaotic around here for a long time but we are over the moon.  

Yes, technically my chances of having another baby with Ds are higher.  The genetic counselor quoted me "1 out of 100" odds.  I haven't told Ben yet - he will be devastated our chances are so low.  

No, we are not having another kid just because Reese has Ds.  We were on the fence about trying for a third before she was even born.  I think she (and Reagan) will only benefit from having another sibling, whether it be of the typical or special needs variety. 

No, we are not finding out the gender.  Again.  Sorry Family, I know this makes you crazy.

Yes, I am old (36 to be exact).  I am considered "geriatric" when it comes to baby making.  I actually prefer the more subtle "advanced maternal age" label.  And because I'm old, I have already seen a perinatologist & will see her again at 20 weeks when a level II ultrasound will be done. 

Yes, Ben will need counseling if Bumpkin comes equipped with a vagina. 

 

 



 

ABCs of Down Syndrome {31 for 21}

October is National Down Syndrome Awareness Month.  If you're anything like I was barely over a year ago, you had no idea Down syndrome even had a month.  As with any cause that breeds passion & loyalty, the Ds community takes this month very seriously.  And many of us who blog about Ds have committed to raising awareness by posting something Ds-related every day in October.  Some creative soul dubbed this movement "31 for 21" in honor of that extra 21st chromosome our loved ones possess & I've got my writing shoes on.

President Ronald Reagan signing the proclamation in 1984 making

October National Down Syndrome Awareness Month.

 

Thankfully, for my sanity, Reese was born on September 16th of last year.  That meant I only had to wait 15 days before the "31 for 21" crusade was in full force.  I am not exaggerating when I say I spent hours reading blog after blog & shedding tear after tear when I got glimpses into "real life" with Ds.  I read about families who traveled thousands of miles to adopt kiddos with Ds & studied pictures of babies who had undergone the same heart surgery that was in Reese's future.  I watched videos of little girls performing in dance recitals & teenage boys playing basketball for their high school teams. Those blogs were my salvation early on - the best antidepressant money could buy.  And that's why I'm inspired to join the movement & share our experiences with the extra chromosome.  If just one terrified mother or mother-to-be stumbles across this blog & gains just one ounce of hope or acceptance, than it will be worth the missed episodes of Glee or those few extra minutes of sleep. 

Because 31 posts seems a little daunting to me, I decided to organize my effort in a way that makes sense.  Each post will be inspired by a letter of the alphabet.  Throw in 26 letters & a few "Wordless Wednesdays" & you've got yourself 31 entries.  I realize I copped out a little today with the "ABCs of Down Syndrome", but I hope subsequent posts are a little more entertaining.

In the meantime, my inspiration...