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

CHANGE

2 weeks ago, I 'rounded' with the menagerie...and everything looked great.  Music to our ears.  With the exception of my now weekly sonos, life has been trucking along as normal.  Although our baby's condition is not miraculously improving, it's certainly not deteriorating and this is the best news of all.  So when I dragged my mother to the sonogram yesterday instead of my usual companion, I thought it would be much of the same but I was terribly wrong.  The amniotic fluid has seriously decreased and is now at a very low level of 8.  To put it in perspective, it should be at around a 17 and my doctor said that if it were to get to a 5, he would have to deliver the baby.  Once I wrapped my brain around that, I realized that it's a much more serious situation than I thought.  See, I've always been one to think positively - so much so, that even when facing a very serious situation like our daughter's, somehow everything would turn out okay.  That she would get through her surgeries and progress through life with nothing more than sporadic appointments to check on her heart's function.  That her life - and ours - would assume a 'normal' feel.  Yes, it may turn out just like that...or it may not.  Nonetheless, yesterday's 'diagnosis' was not at all expected but I guess that's the nature of the game now.

Because of the low amniotic fluid, I am officially on bedrest.  Yippee!  Let's all shout for joy!  Although despite my very long list of things to do from my bed or couch, I am having a hard time being excited.  I'm prepared to not get to do the usual 'mommy duties' with Patrick Jr. once the new baby arrives, but I'm not prepared to give them up now.  It's the whole reason that I stay home: to be a mother.  To mommy my baby.  Some people have huge dreams of ruling the world corporately and others, like me, have huge dreams to mother her babies.  By being given the gift of staying home full time with my son, I have tasted the good life that I've always dreamed of.  I know that everything will change once we welcome Baby Girl and that's okay.  I just wish that I could still squeeze as much time being Mommy to Patrick in my usual fashion before she's born.  That's all.

This is more than "just bedrest."  One possibility is that her kidneys are beginning to fail - a sign that her body is shutting down because it can't support life.  Or that they are other big issues like with her placenta or heart.  Because of the nature of her situation - her high risk - words like "death" and "shutting down" are not necessarily uncommon to hear in conversations with my doctors.  Fortunately, they are very down to earth and don't exaggerate the situation.  For now, though, I'm able to navigate between bed to bathroom, couch to bathroom or couch to bed until my next sonogram on Monday.  We'll reassess the level of amniotic fluid and go from there.  My prayer is that it has bounced back and our sweet baby can have more time to float around in a space where her body knows no hardship, no pain, no struggle.