WONDER BABY

For the most part, Charlotte is still resting comfortably.  We've had to really stay on top of managing her pain, as she is being weaned from her wonder drug for pain.  Please pray that she is kept COMFORTABLE.  Overnight, it was determined that her body isn't tolerating breast milk which is common for girls with Turner's Syndrome due to Mommy's milk being fattier than formula.  The good news is that although she is now on formula for the next 6 weeks, the situation will resolve on its own and then we will resume breast milk.  Daddy bought her a deep freeze to house her milk for Valentine's Day, so until then we will continue to stock it! 

Charlotte's heart is occasionally throwing a premature beat, which is a common something to happen in healthy babies due to immaturity in their electrical systems.  She will be observed and most often this is all that needs to happen, but please call this to mind in your prayers.

Her swelling is decreasing although it's a slow-going process, as was expected.  The bottom line is that her chest needs to be closed.  It's been open for awhile due to her complicated course and we are all focused on closing to avoid higher risk of infection, etc.  Please pray that her swelling continues to decrease and her chest is closed without major complication.  Her kidneys are working, but are still in the same spot as yesterday: not great, not poor...just even Stephen.  Slowly but surely they are getting up to speed....I just hope sooner than later.

All in all, Sweet Charlotte is doing well.  We'd like to tweak a few things obviously, but are happy overall.  Tomorrow's surgery will most likely happen late morning/early afternoon, and we'll post as soon as we know, as your prayers are so important to us.  Thank you for keeping her in your hearts.  It warms ours knowing that so many of you love her.  I wish that I could convey in words just how incredible and extra-ordinary her journey has been.  For lack of a more poetic way to say it, she's quite a fighter...and of course, our Wonder Baby.  

WRAPPED IN HUGS

The sun is shining directly into room #5 - just the way my baby likes it.  I think God is talking to her.  I can't think about the next 2 days, rather just the "right now."  And, right this very minute, my Sweet Charlotte is hanging on against all odds.  Just the fact that she didn't require to be on bypass during her surgery was truly an AMAZING FEAT.  

As one of my dear friends said, she is fighting with a strength beyond understanding.  I am not sure what the future holds but what I do know is that no matter what, our God is GOOD and His hands are all over everything miraculous which we witnessed today.  Right down to the hands that performed her surgery.

STATE OF THE UNION

Our little over-achiever is holding her own!  I'm happy to report that her stats have improved - much to this Mommy's surprise.  And our new goal date is back to the old one at 39 weeks.  Plus, today was marked with more happiness when her measurements were taken.  She's popped back up to her growth trend and is also weighing in at just over 5 lbs.  With a little bit of luck, she'll be in the 6's when she's born!  Sometimes when you least expect good news, God reminds us that He's in control...always.

"The big miracles we're waiting on are happening right in front of us, at every moment, with every breath.  Open your eyes and heart and you'll begin to see them." - Oprah

HOPEFUL HEART

Here is a great prayer, especially for those of us who are feeling anxious lately...

Holy Father, we ask that you put your healing hands over us as we go through the scary road of the unknown.  We ask that you bring wisdom to the doctors in charge of both my and the baby's care.  Above all, most merciful and loving Jesus, protect our baby from all harm, bestowing upon her the health and vigor every baby needs.  We pray that you release our anxiety and worry throughout this ordeal.  May your healing love bring endurance to us to face this challenge with grace and optimism.  In Your Holy Name, we pray.  Amen.

SILVER LINING

Looks like I'm staying put for another few days...

Baby's sonogram showed that her amnio fluid dropped to 6.75 - from 10.55 - but it is still 'good enough' to be at home and not threatening.  The umbilical cord blood flow has fluctuated too but is still within the acceptable range.  And her non stress test showed us that she is still a happy girl.  We expect there to be fluctuation with the amnio level so it's not necessarily as discouraging as it may sound.  It's not great news, but it's certainly not the worst either.  Remind yourself that this is a different ball game we're playing, so for a healthy baby, it may mean something more drastic, but right now to my baby, it means holding out for a little while longer.  

My sincere hope is that it increases by our next visit, as has her growth.  Dr. Weiss will take her measurements next week so a specific prayer is that she has grown.  It's a bad sign if she is not growing or hasn't grown much.  That would be reason for 'something' to happen, a change to be made in our current plan.  Though the silver lining in today's numbers is that I'm home and we know if I'm home, it means that she is doing well enough to warrant it.  PRAISE HIM.

As I once said, it is by God's grace that we wait with peaceful hearts.  So even if this decrease turns into a trend, we know that it is God's plan and He will lead us through.  As I like to think, it's just HIS way of showing everyone the miracles which only HE can work.  And once she is healed, we will be in awe of her powerful recovery because it is truly by the Hand of God.

For nothing is impossible with GOD.

Luke 1:37

ICING ON TOP

Here I sit...at home on bed rest.  It's just the way I like it.  And I hope that after tomorrow's sonogram, I will be back to sit some more.  I've crossed over to 35 weeks and we hope that little miss continues to be content with life 'on the inside.'  To help ward off readmission, my bags are packed and ready to go.  It's actually pretty convenient considering my leisure wear collection is on about a week's rotation. 

Today has turned out to be one of my favorite at home bed rest days.  In anticipation of the baby's arrival, my MIL and I opened a mini bakery as "we" made cookies to package for the nurses.  Fortunately, she loves to bake and I love to ice so it's a perfect combination.  Just like my baby love "monogrammed" cookies.  Plus, she did all the work as I watched from my chair and later, I got to ice them.  (I could get used to this arrangement!) Grandma also made a few "just for Patrick" cookies which he very proudly iced himself.  However he wrestled with actually icing the cookie versus eating the good stuff right away! Decisions, decisions.  

Until tomorrow...

DAY 6: HOPE

I've always had hope although some days it may have gotten buried temporarily.  This past week has been a hard one emotionally and even physically because believe it or not, sitting is hard work!  But the one thing that has been constant is hope.  Thanks to my faith, family and friends, I've been wrapped in it.  

Yesterday was no different.  My priest paid me a visit and although I felt unworthy since there are many other people who probably needed a visit from him more than me, it certainly made my "hope tank" overflow.  As I saw Father Michael peak around my door, I was immediately at peace.  He has a way about him. :)  Plus, I received a special sacrament in the Catholic faith - Anointing of the Sick.  

The baby did well yet again during the non stress tests.  She seems to be quite content in there.  I forgot to mention that she has some hair!  I am excited to see if it will be dark like big brother Patrick's was at first...or blonde, taking after Daddy right away.  

Yesterday also felt more like I was holed up in a hotel room with my best friends during a girls weekend thanks to having my girls with me all day.  There's something about the smell of nail polish that makes a girl happy, right?  And a special mention to my best friend Christy who came all the way from OK to help me forget where I am.  And I kind of did when I woke up this morning with her on my couch!  I may just start calling my hospital room a hotel room.  That's more digestible.

As hard as this journey is, I know that God's grace will be sufficient for me.  I know that even when I may feel like I am alone, He is with me.  His love for me and for this precious baby is more than I will ever know.  I know that through prayer, my hope tank will always be full.  

But as for me, I trust in You, O Lord, I say, "You are my God." My times are in Your hands...

Psalm 31: 14-15