Happy Tube-Free-versary

We made it!  One full year tube free!

I recall the anticipation of pulling the tube last year was filled with excitement and anxiety.  Excited for Lucy to not have a tube up her nose and down her throat.  Excited to not have to rely on a machine to provide her nutrition.  Excited for us not to have to replace that tube every thirty days.  The anxiety came with the failure of this second trial.  Our first trial although unsuccessful gave us information that allowed us to tailor a new plan for Lucy.  This time around a failure meant surgery.  We knew that if we couldn't intake all food orally a g-tube would be necessary.  Surprisingly, the worry wore off rather quickly and by December we were letting Lucy regulate herself.  Measuring everything little thing came to a stop.  However, there are still some residuals from her aversions:
  She still likes to have help when eating.
  She hasn't quite figured out when there is too much in her mouth.
  She still sees mealtime as playtime.

But, she does know when a bite is too big or when she is all done or when she doesn't like a particular food.  She also knows when she eats well, a treat is in her future.

A year in, we have gained three pounds.  We couldn't be prouder of her accomplishment.

Mid October we returned to the cardiologist after a 5 month break.  The week before the appointment we practiced 'echoes' using lotion and a brush.  We talked about laying really still so the doctor could see her heart.  She also gave me one and told me to lay still too.  During the appointment she did exactly that and the echo was completed in a record 30 minutes.  She also sat very still for the EKG and loved all the 'stickers' they let her keep after.  I think Lucy is becoming a pro at this.  When Dr. Husayni came in to discuss echo results, he had 4 residents with him.  Lucy allowed all of them to listen to her heart.  Something which would have resulted in tears in the past.  The outcome:  heart function-good, Aorta-no narrowing, Oxygen saturation-still in normal range.  We earned a three month break at which time we will return to discuss scheduling a catherization to see if Lucy is a candidate for the third surgery.

You read that right....candidate.

I panicked....what if she isn't a candidate, why are we just hearing about this now and what does that mean moving forward.  After discussing with Dr. Husayni, the gist is, there is some criteria for having the Fontan and being able to live the new physiology.  The two biggest are lung pressures and heart function.  If she is not a candidate there are some options, like a modified Fontan.  But until we have the catherization, there is no reason to worry.

In the meantime we are enjoying the fall!
We attended the annual Cardiac Picnic, of course to say thank you to our doctors and nurses.

We goofed around

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And celebrated Halloween

Connor had his six month check-up.  He is growing like a weed.  He is already up to 15 pounds.  That is quite a ways from the four and a half pounds he started at.  I mean that dollar bill is almost as big as him!

We are talking a lot!  Eating baby food which seems to have halted our bottle feedings.  We are sitting fairly well, with some wobbling.  Connor smiles all the time and for the most part sleeps through the night.  Before Connor arrived we had talked about after our hospital time and how hoped he would be a super chill baby.  And boy did we hit the jackpot.  Cannot wait to see him grow into a toddler and interact more and more with Lucy.