CARPE DIEM

Charlotte is busy being a baby...a good baby.  She knows all the right moves like 'eating,' breathing and pooping.  She continues to gain weight each day.  Her goal is 20-30 grams/day and she has been exceeding her goal like a champ.  So we are just soaking in all that is her life right now since we are able to hold her ANYTIME we want.  We can even change diapers!  Who knew that we'd want to do that?  And thanks to a very nice night nurse, Mommy has gotten to give Char Char a few baths.  There's nothing like a clean, yummy smelling baby, is there?

Currently she is receiving all of her nutrition through a nasal feeding tube but on March 30, she'll have a permanent feeding tube put into her stomach, called a Gtube.  Permanent in that it is there for as long as she needs it to take in her daily caloric intake.  Semi-perm in that it goes bye bye when she can take all nutrition by mouth.  It will allow us to feed her directly into her stomach while not burning unecessary calories attempting to eat by mouth.  We know that heart babies face a mountain of challenge in regard to eating by mouth.  It's as if they run a marathon each time they drink from a bottle which after a certain amount of time, only becomes detrimental instead of beneficial.  The Gtube allows for Charlotte to gradually learn to suck-swallow-breathe.  In the future, should she become too fatigued eating from a bottle, we will have the advantage of feeding the rest of her meal via the Gtube.  This will be our norm until she is able to fully accept all meals through her mouth - by bottle or fork!

We pray that she continues to thrive via the temporary nasal feeding tube until the 30th, as well as post surgery with the Gtube.  And we pray for Charlotte's recovery, as well as that of our family's.

As always, your prayers continue to carry us.  And words will never fully express just how full our hearts are thanks to your generous spirits.  May God bless you.

ENOUGH

Charlotte's chest ultrasound showed a SIGNIFICANT DECREASE of fluid in her chest!!!!  Can I get an AMEN?!   Granted, she's had a couple of fantastic days of shedding fluid but the question has always remained if it was ENOUGH...and it is!  On one side, it was hardly noticeable and the other was significantly less.  We'll still need to monitor it as she continues to shed the excess with the next ultrasound being tomorrow morning.  The power of prayer is at work, people.  We pray for overall resolution of the lymph system in general, as it it the root of these tightly knit annoyances. 

Because of her newfound success, she will begin formula feedings tonight through a feeding tube which is inserted in her nose.  I am thrilled that she will start eating for the simple fact that IV nutrition is not as filling as we are told!  Plus, she will become much stronger and better able to tolerate extubation which we are aiming for in about 4-5 days.  In preparation, she's also getting a lung workout.  The CPAP trial tests her lungs to practice as if she weren't intubated - she initiates all breathing on her own but if she doesn't the machine senses and breathes for her.  Because she did so well with the first trial of 30 min, she is being increased to hour long trials and will do these every 6 hours.

Still looming, is the ever-annoying head ultrasound on Monday morning.  Annoying because her beautifully fluffy, dark hair gets slapped with gel (enough to cover a small adult!) and, certainly, because of the enlarged ventricles.  Our prayer is for SUPERNATURAL HEALING.

Charlotte's roommate from the NICU just stopped by on his way home!  Only 3 days older than she is, Baby A has had quite an influence on her by way of 'healing.'  And...she seems to respond to gifts from him - uh-oh, Daddy! We pray that he and my Charlotte get to meet up for a play date someday very soon.  

  

THE BEST MADE PLANS

We've had a few surprises in the last 24 hours.  Charlotte is still not digesting her feedings properly, despite having changed back to formula.  Her thoracic duct is 'leaking.'  She has been started on medication to see if it can correct the problem but if not, it requires a surgical fix to ligate the duct, which will stop it from leaking into the lymph system.  Along with medication, she's receiving IV nutrition instead of formula feedings for the next 3-5 days again to see if it the problem dries up, literally.  

Additionally, her chest drain was removed unexpectedly this morning since the site was looking mucky.  Because of this, Charlotte wasn't able to be extubated as previously planned.  She had an xray this afternoon to see if any fluid had collected in her chest because obviously it wouldn't be the best environment to then extubate.  If there's still too much, the fix is again a surgical one.  She would have a smaller, soft drain called a pig tail drain put in the side of her chest area.  Of course, she would need to be sedated which means that it would delay extubation given she would need ventilator support during surgery.  ARG.

What does all of this mean?  Potentially she could be extubated tomorrow provided her chest isn't draining too much today.  PRAISE JESUS.  If early next week, her feeding issue has not been remedied with medication, then she will require surgery and be RE-INTUBATED.  DOUBLE ARG.  These "issues" as I lovingly refer to them, are causing this Mama Bear major grief.  My Sweet Muffin has come so far and as "minor" as these are in comparison to what she's already overcome, they are still major to us.  Despite having being given the gift of perspective thanks to Char's hard road, it's still hard to swallow - no pun intended.  

Short of these issues, she is rocking and rolling at RECOVERING.  She is such a SUPERSTAR and I pray that rest of the way HOME is on a flat road.

"But one thing I do: forgetting what is behind and reaching forward to what is ahead..."

Philippians 3:13