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.

 



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. 

New Beginnings

"Plan for around 2 weeks in the hospital," warned Reese's cardiologist before surgery.  "Maybe even longer if she has any complications."  In true Reese fashion, she decided to buck authority and ditched the hospital in 5 days.

Although her progress has been remarkable, her journey has not been without a few speed bumps.  She developed a UTI which is not uncommon after having a catheter in place for a few days.  What was uncommon was the bacteria that caused the infection which justified a nephrology consult and a renal ultrasound.  Her team was worried that something else might be going on with her kidneys.  Luckily, all is well with her kidneys & surrounding structures so this UTI can be chalked up to nasty germs floating around the PICU.  Darn microbes. 

She also developed a little wound on her nose from the pressure the breathing tube placed on it while she was intubated.  A wound care nurse evaluated her within hours of extubation & we are treating the wound with honey.  Yep, honey.  This sticky stuff has antimicrobial properties, keeps the wound moist & debrides yucky tissue.  And it tastes good.

We got our walking papers on Monday & spent half the day packing up our goodies.  We entered the hospital with a baby & a bag and left with 2 wagons full of stuff. 

I am in a state of disbelief.  We waited so long for this day, for her heart to be fixed, and now that we're home it feels surreal.  Life before surgery revolved around keeping her healthy and packing on the pounds.  It will take some time to decompress, to finally be able to really exhale, but in the meantime we are just soaking up the good stuff and toasting new beginnings...

Welcome home, Punks!!

Bye Bye, PICU!

As much as I loved the staff and care we received in the PICU, I was not the least bit sad to hear we were leaving.  We bid them farewell this afternoon.

We've moved to the telemetry floor where Reese's heart rate & oxygen levels will still be monitored continuously.  We have a private room with a comfortable cot and attached bathroom.  Mama's happy.

It felt like Christmas in April today with presents galore for Reese and her family.  We are beyond blessed to have the most generous and most caring family and friends around. 

Many thanks to my RMC pals - my first healthy bit of food in 4 days

Aunt Sarah is making a strong bid for the "favorite aunt" title

We have a habit of giving nicknames to rooms around our house.  Reagan's room has been dubbed "The Pig Sty" and Reese's room has been declared "The Jungle".  Grandpa and Grandma Wallace dropped off the perfect accessories for each of their rooms. 

Now if I could just find some bats and stalactites to decorate the girls' playroom, a.k.a. "The Cave".

Reese is obviously making wonderful progress.  She's snoozing away in her own PJs and her arsenal of medical goodies has been whittled down to one peripheral IV.  I look at pictures taken just 3 days ago and can't believe it's the same baby.   



Toobie Free

Reese has a funny sense of humor.  Yesterday she was on a healthy dose of Versed (sedative) and Fentanyl (narcotic) and still managed to wiggle around enough to warrant adding Precedex (another sedative) to the mix.  This morning the nurse turned off every bit of her sedation & pain medication in preparation to get the breathing tube out.  Instead of waking up to prove she could breathe on her own, she immediately decided it was time to sleep.  So much for following the rules, Reese.  You're a lot like your sister.

Five hours later, she finally perked up enough to lose the breathing tube.



Toobie in

Toobie out

She was not satisfied to stop there and a whole slew of equipment was lost in the wake.  She is now sans arterial line, foley catheter, pacemaker wires and wrist restraints.  Her latest achievement was to chuck all supplemental oxygen.  It's been a good day.

  Daddy's Girl

This chick is tough as nails.  She hasn't had a drop of pain medicine all day and still insists on doing her Jane Fonda.  She's even wearing the appropriate attire - gotta love a baby in legwarmers.



I'm actually kind of amazed at her progress even though I know better than to underestimate her.  We call her Ali.  She was born with gloves on and continues to fight through every obstacle she encounters.  You are kicking this surgery's butt, sista.  Keep up the good work.

Bad Behavior

Last night our girl decided she didn't want her arterial line anymore so she removed it.  What she didn't realize was that arterial lines are nonnegotiable following OHS and one was promptly reinserted.  Her feisty disposition and bad decision making bought her some of these:

Yep, baby restraints




She was also started on another sedative that will hopefully keep her a bit calmer.  I love CMH - they are not stingy with their drugs.  Reese has been snoozing away all day.  Now her IV cocktail looks something like this:

She was starting to get a little puffy from the fluid she received in the OR and during the first few hours of her PICU stay.  So now she's getting some medication to jump start her kidneys & help her pee.  It's working:

We've had a good day.  They've been gradually weaning the support provided by the breathing machine throughout the day and she's tolerating it well.  There's a small chance she could lose the breathing tube tonight but it gets tricky with the amount of sedation she's requiring.  I have a feeling they will keep it in overnight, let her get 12 more hours of good rest and then try pulling it in the morning.  Either way, she's stable, she's comfortable and we're pleased as punch with her progress.

In the meantime, our princess got a pedicure.  Her little piggies were just begging for some polish & our awesome nurse delivered:

Naked nails

Pretty in pink



Now if you'll excuse me, I'll get back to reading "The Hunger Games". 

She's Pink!!

Our girl is pink, a rosy beautiful shade of pink.  Amidst the sea of wires and tubes, this is the first thing I noticed when we were finally allowed to see her following surgery.  I can't peel my eyes away from her rosy cheeks.  It's amazing what good circulation can do for the complexion.

I expected to have a minor meltdown when reunited with her in the PICU.  Instead I was elated.  Ask Ben.  I was grinning from ear to ear, felt downright giddy.  She rocked the surgery & she is rocking recovery.  That's not just a proud mama gloating - her team agrees she's a rockstar. 

I want to adopt her nurse.  She's awesome.  And she's doing a great job managing these bad boys:

I surprised myself by keeping it together for most of the day.  I lost it during the hand-off before surgery.  And I lost it when these balloons & bear were delivered.  I love my PC girls.

All in all, we couldn't be happier.  And we couldn't be more grateful for modern medicine and for skilled hands that mend broken hearts.  Happy Heart Day, Punks!!

Heartbroken No More

Today's the day I've been anxiously awaiting and fearfully dreading for 7 months. Exactly 222 days ago Ben and I tearfully sat in the NICU as a pediatric cardiologist informed us of Reese's congenital heart defect and the need for open heart surgery. It's funny how your mind works under periods of immense stress. Instead of focusing on words like "atrioventricular canal" and "congestive heart failure", I was making a mental note of our cardiologist's socks. They were covered in hearts, itty bitty multicolored hearts. How appropriate, I thought, a heart doctor wearing heart socks. Everyone has their own way of coping & apparently mine is to analyze the clothing choices of professionals delivering unwanted news. To each his own.

Over the past 222 days, a day hasn't passed when a sentence didn't begin with "After the surgery" or "When Reese gets her heart fixed". To say we've been living in a perpetual state of limbo is an understatement. Today we handed our precious girl over to a bunch of strangers, albeit highly educated & skilled strangers, but strangers nonetheless. Those strangers have been down this road hundreds of times, taken hundreds of kids from the arms of terrified parents and made promises of a joyful reunion on the other side. I couldn't help but think about the times those promises were broken, when the reunion wasn't joyful, when there was no reunion at all. The mere thought causes me physical pain and I immediately forced myself to go to a happier place. A place where Reese isn't struggling to breathe, a place where the simple act of eating is no longer comparable to running a marathon, a place where we can play & roughhouse without worrying about the stress on her tiny, fractured heart.

The wait isn't over. I am sitting here watching "American Guns" and doing anything to keep my mind occupied so I don't dwell on the reality of the situation. The reality is my daughter is laying on an operating table surrounded by masked faces and metal instruments. Her heart has been stopped intentionally so delicate repairs can be made. I am overwhelmed when I picture this scenario so I will get back to playing WWF and Scramble. I will continue to pray for Dr. Obrien's hands to perform miracles and I will continue to be thankful for all of you who are lifting our girl up in your thoughts. Soon she will be heartbroken no more.