Our Newest Accessory

OK, it really isn't that new, but I've been so busy with the kids, holidays, birthdays, yada yada yada, that updating the blog has taken a serious hit.  Hopefully things will settle after the start of the new year & I'll keep all the Reese-watchers better informed.

So, back to our accessory.  Reese has been sporting a nasogastric tube (NG tube for short) since November 18th.  Her weight gain had started to slow & she was just getting too tuckered out during her feedings.  Both the home health nurse & cardiologist thought this was the best solution. 

Please don't mind the crusted milk on my lips - I'm a messy eater

So now we offer her a bottle every 3 hours.  She takes what she can by mouth & when she gets tired, we finish via the NG tube.  She gets continuous feedings administered through a pump at night to pack in some extra calories.  This method has definitely worked.  Reese weighed 10.8 pounds at our last appointment & is tracking nicely on her growth curve.    

Reese has amazing aunts & cousins that help out with her meals



Now she's getting the calories she needs to plump up & get stronger in preparation for surgery.  Her cardiologist is pleased as punch with her progress & sees no reason to set her surgery date anytime soon.  On one hand, I'm thrilled that her heart is showing no obvious signs of failure & we are granted the precious gift of time to allow her body to gain strength.  On the other hand, the waiting game is torture & I absolutely hate watching her struggle with the simple acts of breathing & eating.  I cannot begin to tell you how relieved this household will be once we get her little ticker fixed.  

In the meantime, we are just enjoying her metamorphosis from not-doing-much-of-anything newborn to the smiling, cooing baby she is today.  She honestly is the happiest bundle I've ever seen.      

Poop

I've been informed that reading my blog is a bit like watching Marley & Me - you know the tears are gonna spill but you can't help but finish.  One coworker told me she sat at the nurse's station & bawled while reading Reese's birth story.  Ben said he watched a grown man silently weep when he read about Reagan's reaction to her little sis.  Facebook messages confirm that if you want a good cry, go read about baby Reese.  While I appreciate how much everyone has fallen in love with our precious little, I don't want you to feel the need to be armed with a tissue each time a I share a story about Reese.

So, in an effort to lighten things up, let's talk about poop.

As a nurse, I feel I'm desensitized to poop in general.  As a parent, I've noticed the bowel habits of my children are often the main topic of conversation in this household.  As a wife to a man with a sense of humor that rivals that of any third-grader, I've been subjected to countless tales where defecation is the moral of the story.  That being said, I was NOT prepared for the events of the past week.

Reagan is almost two.  As a subscriber to more than one parenting magazine, I am well aware that some kiddos are potty-trained as early as 18 months.  Not one to be outdone, I thought it was time to get the ball rolling around here.  I've not been looking forward to the potty-training process.  Dreading it is a more accurate description.  You see, Reagan has been battling some pretty severe constipation issues since she was just a wee one.  Severe enough to be on a very strict daily dose of Miralax.  Miss a dose & she turns into a demon - a butt-clenching, back-arching, red-faced demon. 

Imagine my surprise when she willingly, almost gleefully, assumed the position on her very own potty (she insisted on being nude before christening her throne - hopefully this is not a recurring theme).

Bert, as always, is a very interested observer

I thought she would sit for a moment & then lose all interest until I heard the unmistakable sound of pee trickling into the bottom of the basin.  Winning the Powerball couldn't be sweeter.  A full-blown celebration ensued with a lot of clapping & jumping & high-fiving going on.  Ben ran in to determine the source of all the ruckus & I exclaimed we had the smartest almost-2-year-old on the block.  Potty-training was gonna be a breeze.

Proof

As I was cleaning out the aforementioned urine, I heard a shriek of excitement followed by intense clapping from our bedroom.  I rushed out to find this...

 Yep, that's what you think it is

Apparently Reagan thinks only pee goes in the potty.   Poop, on the other hand, goes on the carpet in the corner of mom & dad's bedroom.  We've got some work to do.

Not to be outdone by her big sis, Reese thought she would add to the poopy shenanigans for the evening.  I've changed a lot of diapers.  Fortunately, I've been able to avoid the projectile poop that so many other parents have described.  I've secretly attributed this success to my mad skills & super speedy technique.  Apparently Reese thought it was time to put me in my place.

 Seriously?

Seriously gross

Time for a shower & then bed.  I'm pooped.

Proud

I've officially entered the world of special needs.  The process is amazingly streamlined now.  While still in the NICU, we met with a social worker who referred us to First Steps (for those that aren't familiar with this program, it is Missouri’s Early Intervention system for infants and toddlers, birth to age 3, who have delayed development or diagnosed conditions that are associated with developmental disabilities.)  A diagnosis of Down syndrome automatically qualifies Reese for this program & we're not wasting any time. We've already had 2 visits from the coordinator to identify expectations/goals for the next 6 months & our first Occupational Therapy session last week.  For now, Reese will work with an OT twice a month & we will add Physical Therapy & Speech Therapy services when she's ready.  Between visits, Reese is subjected to daily workouts led by her parents (okay, led by me - Ben is more into snuggling & gazing at his new baby girl).

The above is just a preface to the real point of this entry.  I'm sure reading about Reese's therapy schedule is about as exciting as watching KU play football this year (he he...go Tigers!).  While setting goals for Reese's therapy, I was instructed to fill out a questionnaire.  One of the questions was, "what makes you most proud of Reese?".  At first I thought this was an odd question.  She was 4 weeks old at that time & her hours consisted of sleeping, eating, pooping & more sleeping.  Which of those activities made me most proud?  Seriously?  I thought of skipping that question & then it hit me...it hit me like a ton of bricks.  It hit me in such a way that my heart burst & the tears poured from my eyes.  I'm proud of Reese because she's a FIGHTER!!

From conception, Reese has been blessed with an extra copy of her 21st chromosome.  She was given the task of creating an entire little body with extra genetic material that is often not compatible with life.  Because of this extra chromosome, her heart didn't fully develop & she's been surviving, even thriving, with essentially a big hole in the center of her heart. 

She has low muscle tone that will delay her development & cause her to reach milestones at a slower pace.  But look what she does already...

I'm not in denial.  I realize she will face many challenges but every ounce of my being knows she will reach her full potential.  She has a family that loves her unconditionally, a big sister who is already a fierce protector, an incredible local Down syndrome guild that will surely be an invaluable resource to us in the upcoming years.  But most importantly, she has grit.  She has moxie.  She's a fighter!

Fighting her way out of the NICU...

into the arms of her pumpkin-lovin' family

A Big Sis

Sixteen days ago there was only one baby residing in this house.  Sure, another was hanging out in the womb & savoring those last few hours of perpetual warmth & nourishment, but only one baby was actually walking the halls of the Wallace abode & claiming it for herself.  Reagan.  Our first.  The beloved little creature we welcomed into our lives 21 months ago that has rocked our world & taught us a whole new level of love & patience & patience & did I mention, patience?  I still call her "my baby".  Every morning I greet her in her crib with an exuberant, "good morning, baby!!"  In response to her persistent cries of "mommy, mommy", I'll say, "yeah, baby?"  And it's not just me.  She's a pro when it comes to reciting names of family members & the members of our animal kingdom, but when I point to her & ask her name, she always replies "babeee" (in that adorable high pitch, sort-of-a-question type tone). 

Sure, throughout my pregnancy I thought about how different life was gonna be with two.  I knew Reagan would somehow have to adjust to not being the center of our universe anymore.  She would have to adjust to sharing mommy & daddy with this new addition to the family.  And those that know Reagan were largely apprehensive of how this adjustment would go.  For those that haven't met her, let's just say she has a mind of her own.  Laid-back & easy-going are not adjectives you'd use to describe her.  She's independent, stubborn & mischevious & she's been this way since birth.  And we love every single sassy ounce of her.

Then September 16th was upon us & something magical happened.  Reagan grew up before our very eyes.  What was supposed to be a 2-day sabbatical with Mimi (Grandma Atchison) turned into a week long shuffling between friends & family.  The 6 days I spent in the hospital felt like an eternity for an obvious multitude of reasons, one of which was the separation from my Reagan.  For me it was torture, like having my fingernails ripped off one by one, & I kept wondering if she thought I had abandoned her.  "Where's that woman that typically greets me every morning & tries to make me eat vegetables & chastises me when I hit the dogs?" is what I envisioned her thinking.  I just knew she was a mess like her mama.  Boy, did she prove me wrong.

Reportedly, she went from house to house & person to person like a champ.  No crying, no tantrums, just an "OK, I'm totally gonna go with the flow" type attitude. I had completely underestimated her.  But I still knew the worst was yet to come.  She was gonna implode when we finally brought Reese home.  No more "Mr. Nice Baby".  Boy, did she prove me wrong again.  The transition was seamless.  One minute she went from sharing the house with only her 4-legged friends to sharing it with a being that we loved as passionately as we loved her.  Her sister was home & there was no jealously, no evil glances, just acceptance.  Acceptance & more importantly, love.  I have no idea how this precocious, almost 2-year old drama queen came to such an easy realization that Reese was now forever intertwined in our lives.  Maybe it's the instant bond of sisterhood, or just nature's way of allowing families to expand without drama, but it was heavenly.  And now it's all about the kisses...

A Birth Story

Where do I start?  How can I put into words the events of the past 8 days?  Life-changing events that have already given me a new perspective on life.  Gut-wrenching events that have opened my heart and created a new capacity for love.  Soul-searching events that have shaken my faith but ultimately brought me closer to my family, friends & Creator.  I guess I'll start at the beginning...

September 15, 2011 - 9:00 p.m.
The contractions are getting stronger...and closer...and longer.  Ok, I thought, here we go again.  Grandma gets the call to come stay with Reagan & we are on our way to Research Medical Center.  Ben asks me if I'm ready.  Sure I am...been there, done that. 

September 15, 2011 - 11:00 p.m.
Ben & I are in the holding area.  I'm hooked up to the monitor & dilated to 3 centimeters.  The contractions are getting worse but still tolerable.  Baby's heartrate is a little low so I'm instructed to drink some juice & lay on my side.  No problem, I thought.  The nurse asks, "is it a boy or girl?"  It's a surprise, we say. 

September 16, 2011 - 1 a.m.
I'm now laying in the delivery room.  My OB suggests breaking my water to get things moving along.  I agree - let's get this show on the road.  Bad idea...bad, bad idea.  The next contraction was infinitely stronger.  Uh oh, I thought, this is really gonna hurt.

September 16, 2011 - 5:47 a.m.
It did hurt...a lot...but it's over.  It's a GIRL!!!  Baby Reese is here & she's perfect.  She's laying on my chest & crying.  I look at her with a pride that only a new parent can feel.  She's swaddled in blankets & passed around to dad & her grandparents.  Life is good.  The nursery nurse comes in to do her assessment & suddenly Reese is gone.  "She's a little cool.  I'm going to take her to the nursery to warm her up & you'll have her back soon."  Should I have known then?  I honestly didn't feel any sense of dread.  No warning sirens going off in my head.  To me, she's perfect & perfectly healthy.

Time starts to get a little fuzzy here.  I remember being taken to my post-partum room.  Physically I feel amazing, so much better than after Reagan's birth, but am starting to acknowledge the little tugging in my chest.  Where's my baby? Why is it taking so long?  In the meantime I look at all the usual paperwork & my heart swells when I fill out the birth certificate form.  We have another child!!  Our family is now four instead of three.  I am the luckiest girl in the world.

Then...BAM!!!  Time stops.  The room shrinks, sounds muffle, I'm having an out-of-body experience.  "Reese is having some difficulty with her oxygen levels and she's exhibiting some classic signs of Down Syndrome," the NICU nurse practitioner says. Classic signs?  Like what?  She starts listing them off:  floppy muscle tone, almond-shaped eyes, low set ears.  "I also hear a heart murmur so I've ordered a STAT echocardiogram."  My world is reeling.  I look at Ben & will never forget the pain in his face.  How is it possible for two people go from pure elation to terrifying grief in a split second?

I spend some time in denial.  They have to be wrong.  There must be some mistake.  They're just being overly cautious.  This denial did not last long.  The neonatologist walks into the room & verifies our fears.  "Reese's heart is enlarged & her lungs are full of fluid.  We're moving her to the NICU now & a pediatric cardiologist from Children's Mercy will be here soon to look at the results of the ECHO."  I ask the question.  "Yes, I think it is Trisomy 21," she says.

Let's back up a little.  We declined all prenatal screenings for chromosomal abnormalities.  I knew I was approaching the dreaded "advanced maternal age" label but both of us were adament the results wouldn't matter.  We would not terminate.  This was our baby & we would love him or her no matter what.  We had a little scare at our 20 week sonogram.  The tech thought she saw a heart defect (ventricular septal defect, to be exact) but said the baby was in a difficult position to get clear enough images to say for sure.  We had 2 more sonograms at 22 & 24 weeks & were told our baby's heart was fine.  No defect!  Phew, what a relief.

Back to reality...
Ben & I are finally taken to the NICU to see our baby girl.  What should I expect?  This is where being an ICU nurse is both a blessing & a curse.  I know all about the equipment & tubes & wires but I've never seen them attached to a person I love more than myself.  I've never been on the other side.  The nurse escorts us to her bed & my heart explodes.  Those cheeks, those lips, that hair...sheer perfection.  The tears finally come & they come with a vengeance.  Her heart may be fragile & she might have an extra chromosome but she is ours.  We love her with abandon & without prejudice.  Ok, I thought, here we go...

Fast forward to today.  Life goes on & life is good.  I'm sitting in the kitchen with a cup of coffee & staring at my beautiful baby girl.  Reese spent 6 days in the NICU where they monitored her vital signs & ability to feed.  I was allowed to stay at the hospital & watched her make noticable progress each day.  The pediatric cardiologist was amazing.  She sat down with us & explained Reese's heart defect...complete atrioventricular canal.  Complete atrioventricular canal.  Three little words that scare me beyond belief.  I will share a link that describes this defect in detail but to put it very simply, Reese has a hole in her heart & one valve where there should be two.  This will require surgery down the road.  Open heart surgery.  Three more little words that scare me beyond belief.  Again, this is where being an ICU nurse is a curse.  I take care of patients after open heart surgery all the time.  They do fine, they go home & it all seems very mundane.  But now you're talking about my kid & the fear outweighs my knowledge.  The cardiologist assured us the procedure is very common. "We did one today & one yesterday," she said. If all goes well she'll be in the hospital for about a week & then will go home with a healthy heart.  Most of the time these kiddos require no further surgery & will be as active as any other kid their age.  So, here's the plan.  We have to get her fat & strong before surgery, ideally when she's between 6-9 months of age.  She will likely be on some medication prior to surgery to ease the burden on her heart & allow it to pump more effectively.  It's a waiting game & I'm sure it will seem like a lifetime to us.

Part 2...
Reese has an extra 21st chromosome.  She has Down Syndrome & we're waiting on the results from a chromosomal study that tell us exactly what type.  I'm slowly becoming an expert on this condition & have been AMAZED at the support that is available in the KC area.  The Down Syndrome Guild of Kansas City has been wonderful.  They brought over a huge basket of goodies for Reese that also included tons of resources for Ben & me.  I'm inhaling this information & it has put my mind at ease.  We are not alone, we are not the first parents to be given this diagnosis & we will all be fine. 

I want to thank EVERYONE who has reached out to us over this past week.  I'm sorry I've failed to return numerous texts & emails but we appreciate all of the thoughts & prayers.  We are reminded that we have the best family & friends in the world.  We will be leaning on you as we set forth on this journey and hope that Reese's story will somehow positively impact each and every one of you.  I am amazed at how this little creature has already inspired me to be a better wife, a better mother to her sister & hopefully a better person in general.  God bless.

Suggested links:
http://www.kcdsg.org/
http://www.childrenshospital.org/az/Site521/mainpageS521P0.html