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.

 



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.