Wednesday, February 29, 2012

FOLLOW ME

My FAITH is smiling.  Can you see?  God's hands have touched us in a physical away yet once again.  This morning Char is negative 168!  What does that mean?!  It's another small miracle.  The diuretic is WORKING.  Enough so that Dr. M will wait until Friday for another chest ultrasound before determining if she requires the catheters (drain tubes, essentially) surgically placed in her chest. Talk about a turnaround!  As you know, her body has been PARTICULARLY stubborn in the way of shedding excess fluid, despite quite an effort put forth by the docs.  And now...we've been blessed with hope as we FOLLOW HIM.  

"Your word is a lamp to my feet and a light for my path."

Psalm 119:105

Tuesday, February 28, 2012

PRETTY IN PINK

You were placed in my arms by heaven - sent straight from God - but I have to remember that you are not mine to keep.  Rather you will be asked to soar into the world soon and GIVE what you were sent to do.  You came to teach us, give us joy, make us whole and connect us to GOD.  

And as I held you in my arms once again, I whispered "I'm so glad you are mine."












CLAIM IT SO

What a TRUE BLESSING it is for me to share that because of our GOOD GOD, Charlotte's ventricles aren't enlarged enough to immediately have surgery!!!  We have been given a reprieve until Monday to have the next ultrasound and before any decisions are made.  

Please also call to mind healing of Char's thoracic duct and for the swelling in her chest to resolve.  We are waiting on a chest ultrasound to reveal if it has worsened, and if yes, she will require the pig tail cath to be surgically placed to help drain the excess fluid.  A speed bump in the road, yes, but certainly one I hope to avoid.  

We are so grateful for your prayers, texts, cards, treats and hugs.  Thanks to your support, we are happier, peaceful and of course, well fed.  Thank you, thank you, thank you.

"And the peace of God, which surpasses all understanding, will guard your hearts and minds in Christ Jesus."  

Phillipians 4:7

              



Monday, February 27, 2012

PINK SILK CURTAINS

Yesterday was a great day.  It was amazing as SWEET CHARLOTTE was placed in my arms again and a memory which I have kept reliving ever since.

I thought we'd crossed over another BIG hurdle when she came off the ventilator, but it ended up being short-lived when she was re-intubated last night.  A minor set back for Charlotte because she's just not strong enough to breathe on her own quite yet, but a major one for Mommy.  Just because my brain understands doesn't mean that my heart does.  Emotionally, it's been a harder day for that fact alone.  And then I saw the neurologist.

He came because Charlotte's weekly head ultrasound showed a different picture than last week's.  Enough so, that Dr. Neurologist paid us a visit.  Her ventricles are enlarged because they are not draining effectively into the spinal column.  If enough fluid accumulates, then pressure builds to an unsafe amount.  Obviously this doesn't make for a cohesive environment and if it doesn't resolve on its own, she will require surgery to fix - a shunt is placed in her brain to drain the fluid.  We will know more tomorrow and are looking at having another scan later this week before we know if she needs surgery or not.  We pray for SUPERNATURAL HEALING.

Also still on our PRAYER PLATE..... We pray that the leaky thoracic duct resolves with medication and her 'nothing by mouth' diet.  If not, she will require surgery to ligate the duct.  We also pray that the swelling in her chest decreases substantially and supernaturally!  If not, then a catheter will be surgically placed to drain it.  Believe it or not, it's called a pig tail catheter.  Leave it to the medical community to glamorize it. 

Sometimes I feel like although I may seem unruffled, I'm paddling like crazy underneath.  And though I may feel this way, I know that GOD is right there beside me.  And then I take a breath again.  And choke back tears.  I trust you, God.  I trust you with my whole HEART...and Charlotte's too.  

Sunday, February 26, 2012

REINTUBATED

Charlotte had to be re-intubated tonight.  It wasn't an emergent situation - her "numbers" were an earlier indicator - but she's just not strong enough to keep her lungs inflated.  The xray shows a few pockets in her lungs which have collapsed.  With nutrition and time, she should be strong enough to extubate again.

Until then, we wait.


BABY BREATHS


She is breathing on her own.  Charlotte was extubated this morning at 8 am.  Besides being one of the wildest experiences of my life, it has so far been good for Charlotte.  She has a nasal cannula that gives her air but her lungs are working on their own, without ventilator support.  She'll continue to be monitored over the day to ensure that she's jiving with breathing off the vent.  If not, she will be re-intubated.  Right now though she is sucking on a pacifier - a first - and BREATHING! 

Watching my child being asked to breathe after her ventilator tube was pulled was not an experience I care to repeat.  I only realized after it was over, that I had held my own breath praying that she would find hers. And now that she has, I pray that she continues to work hard.  She seems to have a laid back attitude which is actually a good thing for keeping calm throughout this process, as it promotes well-balanced blood flow to her lungs and body. 

This was a HUGE STRIDE in the right direction and although we aren't "out of the woods" yet, she is making baby steps, as well as her own baby breaths in the right direction.  We pray for the rest of today (and many days to come) to be blessed with deep breaths and of course, LOUD CRIES!


Saturday, February 25, 2012

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


Friday, February 24, 2012

DREAMING BIG

As I was driving to the hospital today, I caught myself thinking about the future, when Charlotte comes home.  I thought about what life will be like when she's older.  I'm not sure at what age she was when I pictured it, but she was past the surgeries and we had assumed a 'normal' life.  My blond little Charlotte wearing a side ponytail and dress running around with Patrick Jr.  In my heart, I know that one day, we'll have that and I'll remember the challenges which we overcame together - both Charlotte's personal journey and ours we tackled as a family of four.  And although some of these days are days I would never dream of repeating - or even remembering - they are meaningful because they grounded our faith and brought so many together in support of my Sweet Charlotte.  

I'm not sure if she'll ever know what an impact she has already made in the world.  Although small, her footprints certainly leave a BIG impression.  Some may think a person's faith is tested in times like these but ours is only more firmly rooted as we focus on the TRUTH and let GOD lead us through the darkness to where there is light.  And light, my friends, is where we will be.

TODAY WE PRAY:

Charlotte is being weaned from the ventilator.  We pray that it goes smoothly and she is able to breathe on her own.  She has an internal sensor on her diaphragm which triggers a breath when Charlotte "says" she wants one.  Go figure!  This is different from the 'auto' or 'manual' modes of the vent, and we are hoping that this helps keep her in sync with the machine.

Her second RA line will be removed.  We pray that it is removed without complication.

We are THANKFUL for a successful broviac surgery last night and the general surgeon who performed it.  And although it was not without a surprise - in true Charlotte fashion she wowed us with her unique anatomy in that it's unlike that of a typical one.  The line was properly placed but had to be modified due to her vein being "squiggly." It should work for the remainder of her recovery in the hospital, but it's not as "long-term" as it should be.  We pray that it does its job for Charlotte so we don't have to come up with Plan B.  

And for our SWEET CHARLOTTE to rest comfortably and that those who care for her, do so with compassion and tenderness.

As always, THANK YOU for your continued prayers.  We are forever grateful.

Thursday, February 23, 2012

GREAT STRIDES

We have a lot to be THANKFUL for today by way of ANSWERED PRAYERS:

1. Her RA line was SUCCESSFULLY removed and the bleeding was not excessive (if hardly existent) so not requiring re-opening her chest.  

2. Instead of futzing around with her usually non-cooperative veins, she will have a broviac line established which is a BLESSING.  First, she will be sedated via medicine through pre-existing PICC line - hallelujah.   Then the line will be surgically placed by Dr. Herman via a bedside procedure.  Our specific prayer is for Dr. Herman to get her vein to cooperate for a successful "installation" as I am referring to it.

3.  Once the broviac line is placed, her second RA line will be able to come out. Great news because it has been in since surgery and again, just needs to be OUT.  (Please pray that when it is removed in the next day or so, it too will be successful just as the first removal so to avoid having to re-open her chest.) 

4. Her vent weaning is going GREAT.  Enough so that post broviac, she will be extubated, as in, it will be REMOVED people!  Having the broviac surgery will delay extubation a bit - possibly a day or so - since she will be sedated obviously. We pray that when she is extubated, she will rock and roll in the breathing department to avoid having to go back on the ventilator which can be more common than not.

5. Her brain oxygen content is measured by a sensor that has lived smack dab on her forehead.  It has never been terribly accurate and will now be REMOVED.  HELLO HAIR BANDS AND CUTE HATS.

6.  Although a good run at a second try with Mommy's milk, her little self does not tolerate it, so back on formula until the situation RESOLVES most likely in about 6 weeks.  Mommy will keep stocking the deep freeze until then as she will resume breast milk.  YAY.

7. Dr. M also took out her "jumper cables" (again, a Mommy term), commonly referred to in the medical field as pacemaker wires which she has had since surgery.  Too, later today some abdominal stitches are being removed.  

Whew!  A lot has happened and it's not even lunch.  I am SO THANKFUL for these BLESSINGS we have received.  THANKS BE TO OUR GOD.  

Wednesday, February 22, 2012

I LIKE BORING

UPDATE:  C needs to have a new IV line established since her "RA line" is defunct and will be removed later today.  If you'll remember, little miss has tricky veins, as most newborns her size do, but perhaps even more so.  A very skilled nurse has already tried twice, and although stuck the vessels with the first pricks, both were deemed unsuccessful due to Char's blood vessels being "blanched," or "blown."  C is resting now and another attempt may happen later today, if not tomorrow.  No one here is in the business of sticking babies like pin cushions.  It's important to have this IV line should Charlotte ever need to receive blood, as her other "line," a PICC line, is not large enough for blood products.  Another point worth noting for prayers is, as a precaution, the OR team is on stand by when the RA line is removed, as it leads directly to her heart.  If the bleeding can't be stopped, it would need to be done so surgically.  This requires re-opening her chest and stitching the hole where the line was.  This isn't typical however, on rare occasions, is required so we ask for special prayers for a smooth removal and at establishing a new IV line.  THANK YOU.
___________

Dr. Mendeloff told me to be prepared for boring over the next few days.  PRAISE GOD!  I can handle boring! :)  Char Char is doing great.  Her renal function is STABLE, being slow to 'wake up' as I call it.  She is tolerating her milk feedings, so he increased the amount she is receiving which is GREAT.  Her blood gases show that the blood flow to her lungs and body is WELL BALANCED.  This is the most important of all because it means that Charlotte's body likes the last heart surgery and is healing as expected.  Of course, we keep hearing that Charlotte likes to operate according to her own agenda but as my husband told Dr. M, "she's just like her Mother!"  Now, is that such a bad thing?  I think not!

As Charlotte wakes up more throughout the day, her ventilator will continue to be decreased in air flow as part of the slow WEANING process.  This morning, her respiratory therapist exercised her lungs by manually giving breaths with a bag vs being on the vent.  This helps inflate the top areas of her lungs which are collapsed but is expected thanks to the nature of being on a ventilator.  It's up to Charlotte to dictate the pace at which she is weaned.  I hope that for her sake, it is a seamless process and she is "free" soon.  

Seeing our sweet baby's BEAUTIFUL BLUES makes my heart sing!  She is such a little muffin and is starting to look more and more like herself as she loses the excess fluid.  Although, there's still a generous amount of body wall edema (swelling in her chest area), and a fair amount on her face, neck and limbs.  Again, it's up to her body to dictate the pace which really means when her kidneys fully wake up, she will lose the fluid.

I am so THANKFUL to God for His blessings of HEALING for Charlotte.  As we trust in HIM, we know love, we know peace and we know our greatest gift: Little Charlotte.


Tuesday, February 21, 2012

SLEEPING BEAUTY

Little Miss is still sleeping from the sedative, etc that she has been on since her chest closure.  We expect her to wake up sometime later today.  Mommy is VERY excited to see those pretty blue eyes again.  It's been too long since I've seen them!  She is resting comfortably and is doing well.  Dr. Mendeloff suggested another attempt at mommy's milk to see if she will tolerate.  So far, so good.  

Her stats look good overall.  The menagerie of docs caring for her continue to tweak things like medication, oxygen rates, etc to ensure her lungs and other organs are getting balanced blood flow, among other things.  We are hopeful that once she wakes up, the rest of the way home is a smooth trip.  Our next big hurdle is coming off the ventilator which will start to be weaned tomorrow most likely.  All we can ask for is continued rest and recovery.


Monday, February 20, 2012

HEART OF HOPE

OUR BABY IS ZIPPED UP!  In what seemed like a blink of an eye, Dr. M closed her chest and appeared in the waiting room to tell us that it went well and that she is STABLE.  My jaw must have been wide open because he had a huge grin on his face as he said those magic words.  

It's done.  She's stable.  God is good and gracious.  Thank you Lord for the light of hope which shines through the darkness of my fears.

Please also remember Dr. Mendeloff in your prayers of THANKSGIVING. Besides being incredibly talented, he is truly one of the most amazing people we know.

"The Lord is my light and salvation; whom shall I fear? The Lord is the stronghold of my life of whom shall I be afraid?"

Psalm 27:1 

SURGERY TIME

Charlotte's surgery team will arrive in about 15 minutes to get set up pre-surgery.  We will update as soon as the good doctor is finished.

As always, thank you for your prayers.

FIRSTS

We've experienced a lot of "firsts" over the past 18 days, but they aren't as typical as life with a newborn usually is expected to be.  I wish we were busy juggling life with a 23 month old and newborn at home.  Trying to ease the transition so as not to rock the boat for Mr. Patrick. Revisiting our swaddling techniques and practicing "shushing" to help soothe our newest family member.  Instead we are trying to stay afloat amidst the sea of information we get every hour in hopes that a tiny piece of it will sink in and we know even how to "feel."  It's been a constant challenge to balance our emotions, our time with Patrick and with Charlotte and just existing.  Some days it has honestly hurt to breathe while others have been filled with dim lights and soft music.  Talk about a roller coaster of emotions - taken in hypersensitive mode.  

While we continue on our path, we affirm our belief in God's plan. We know it's good and true...but it doesn't mean that our walk can't be scary.  As we wait for Charlotte's surgery, please take a moment to pray for yet another first - a complete chest closure and, of course, supernatural healing.  We hear it all the time from the medical team - our wonder baby's course has been full of twists and turns and yet she's still here, against all odds.  God's hand is truly miraculous, isn't it?  Keep on doing your thing SWEET CHARLOTTE.  You have an older brother at home who is waiting to meet you.

We will keep you posted as soon as we know what time Charlotte's surgery is.  Stay tuned...
  
















Sunday, February 19, 2012

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.  


Saturday, February 18, 2012

WHAT'S IN A NAME

Naming Miss Charlotte Rose proved to be much more difficult than one would expect from this name-obsessed mama!  No doubt made more complicated when we found out that we were having a Charlotte and not a Charlie, considering our name list only included BOY names.  Fortunately for all involved, we settled on Charlotte just about 2 weeks before she made her debut.  Rose was another story.  On day 4 post birth and as the birth certificate office was closing, we finally decided.  Patrick and I had 4 middle names to choose from and it may have been as hard, or harder, to decide on than her first name!    Besides adoring the name, Charlotte is actually a family name on my side.  It is my grandmother Theo's sister's name.  Rose is after my grandmother Rosetta and Patrick's grandmother Felicia Rose.  And to us, CHARLOTTE ROSE is the most perfect name for our sweet girl.

Dr. M is pleased overall with her progress.  Our main goal is for her kidneys to work more efficiently as they are the key player in draining excess fluid from her body.  This is IMPERATIVE for a successful chest closure on Monday as well as maintaining stability.  Please pray specifically that her kidneys continue to heal.  

Also on my heart is my sweet "Baby Patrick."  Truly not a baby anymore, but certainly he will always be.  I pray that he knows just how much his Mommy adores him...and how much my heart aches to be with him every day.  I know this is only temporary although it's especially trying given I was on bed rest for so long and it's so hard not having Mommy in her usual capacity.





Friday, February 17, 2012

HALFWAY THERE

Charlotte's chest is halfway closed.  Dr. M felt like it was in her best interest to keep it open partly until Monday.  This will allow itty bitty Charlotte to gradually adjust to the closure.  She's back on a paralytic (to paralyze her muscles during surgery), and other strong medicines which had been previously weaned, but these are standard for surgery to ensure her heart function is preserved.  We hope that she is able to be weaned from them just as efficiently as her body did after Tuesday's second heart surgery.  Specifically, we pray for God's healing power at work within Charlotte and a day spent in rest and recovery.

This is a great stride in the right direction for Charlotte's healing, and maybe one day soon when she will be placed in my arms again.  Patience, Mommy.  Patience.

"The Lord is my strength and my shield, in Him my heart trusts; so I am helped, and my heart exults, and with my song I give thanks to Him."  

Psalm 28:7




P HEARTS C

Big Brother Patrick LOVES Miss Charlotte.  He is so excited "baby" is here, despite wondering where she went now that she's no longer in my belly.  (We'll have to work on that one!) He used to give kisses and rest his head on my stomach when I was preggers and shortly after Charlotte had made her debut he was staring at my somewhat flattened belly in total confusion.  Fortunately, Charlotte made up for her absence with a gift to P and considering he loves trucks, books and stickers, it was a hit.  Of course, it was a win for all of us considering his little boy voice uttered the sweetest sound: Charlotte.  It was one of my favorite life moments.










Thursday, February 16, 2012

ZIPPING ALONG

Charlotte's getting her own zipper.  Well, that's what the other heart babies call their chest closure scars.  Dr. M shared the good news that our sweet baby is ready to have her chest closed tomorrow morning.  We are in awe of the miraculous healing that has taken place so far since her second heart surgery on Tuesday. It's truly inspiring to witness and we are thrilled that her progress warrants this ever-important next step.  Once her chest is closed, drain tubes and lines get to start coming out!  Too, she will be weaned from the ventilator so that one day soon, my Sweet Charlotte will taste the good life again without breathing support!!  And once she is off "the vent," she'll be able to focus on eating before going home.  That alone is a HUGE hurdle since it will feel to Charlotte as though she's run a marathon each time she eats, but we will take on that challenge later.

The surgery is scheduled for 730 am tomorrow.  Potentially it will be a partial chest closure if Charlotte won't tolerate it being closed all the way, but the good doc won't know until he is in surgery.  I am hopeful that this is what Charlotte wants, because given her track record, we all know that what Charlotte wants, Charlotte gets!  

"Pour out your heart like water before the face of the Lord.  Lift your hands toward HIM for the life of your young children."

Lamentations 2:19

CARRY ON WARRIORS

The mood in Charlotte's room is easy, joyful and thankful.  We are so grateful to our Gracious God for His gift of Charlotte's progress and, of course, for peace.  As Patrick and I closed our eyes the night before last, he told me that he couldn't take another day like what we had just experienced for the second time.  I couldn't agree more and yet I realize that God knows what we can and can't handle and through even our darkest pain, there is light.  Just take a look at what good has come about thanks to my Char Char.

There are so many on their knees thanking God for her precious life as they plead for her to be healed.  And those same people on their knees hug their own babies a little longer at night.  They let the 'little things' slide as they remember that life is more than to-do lists and bedtimes. Thanks to Charlotte, people have been drawn closer to God and those who have fallen away from Him, have instead turned to Him in need... and in thanksgiving and praise.  Thanks to your emails, texts and letters, we know of so many who are STORMING HEAVEN petitioning God for Charlotte.  We thank you for the incredible gift which you continue to give us as you pray for our Sweet Baby and for that we are forever grateful.  

In the midst of our worst pain, we have experienced incredible joy.  Charlotte is our gift and is such an inspiration, not to mention, quite the puppeteer!  (Daddy has a lot to look forward when his little treasure turns 16, doesn't he?!)  Even Dr. Mendeloff has said that our wonder baby is running the show.  That's fine with me because I know who she gets her orders from. 

Sometimes I catch myself thinking how incredible it is that my 13 day old baby has already gone through 2 open heart surgeries, as well as having 3 others, including being on ecmo!  She is the epitome of strength and God's love and is a true inspiration.  We have a long road ahead of us, but she seems to be much happier after having Tuesday's surgery.  The way I describe it is that she prefers the bag phone vs the iPhone.  The BT Shunt is much more her style as we continue to be in awe of her stats.  She continues to wow us with stability...and even some progress.  However, our main goal is resting.  

Possibly, her chest may be closed as early as Friday, although again that depends on her.  It may be that it is closed in stages to allow for her body to handle it successfully.  She's blazing her own trail, isn't she?   She's also had a day of milk feeds via a NG tube in her nose which goes directly to her belly.  It's going in at a rate of 1 ml per hour(!) and hardly enough to do anything more than coat her tummy, but it makes Mommy happy that she's getting liquid gold. Too, her lactic acid has hit an all-time record low!  Her brain bleeds are unchanged, meaning that the one the left side is actually resolving and the other is unchanged.  Because they never worsened, she is not at risk for any neurological damage.  PRAISE HIM.  She has even begun to tee-tee a bit more.  Her pain is being managed but as a mother, it is one of my biggest concerns.  I pray that it is minimal.  Her swelling has increased a bit more than yesterday and she hasn't been able to shed it. Pray that the excess fluid finds a new home soon so my daughter can begin true healing with chest closure and comfort.  

We will continue to update you with her PROGRESS.  Thank you for the great comfort which each of you bring us through prayer.  


Wednesday, February 15, 2012

WHAT A DIFFERENCE A DAY MAKES

Yesterday morning I thought I may have seen my daughter for the last time.  This morning Dr. Mendeloff is talking about when he wants to try and close her chest.

Charlotte had a terrific night and the doctors and nurses can't believe how quickly she has turned things around.  Her lactates have gone down steadily through the night and are at their lowest point since I started hearing about them.  She has come off of almost all of the medicine that they were using to help her heart beat strongly and she should be totally off of it soon.  They are even talking about starting to feed her milk today.  There is still a long way to go but we are blown away by the progress she has made in the past 24 hours.  

Yesterday morning when we heard Dr. Mendeloff say "I've never had to do this before" it was one of the scariest things I could imagine, but now he can say "I've done this before, and it went very well."  

Tuesday, February 14, 2012

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.



GIVING THANKS

We just watched our sweet baby wheel by as she was headed back to her room.  She made it through the surgery without going on the heart/lung bypass machine - AMAZING.  She must like the OR, because again, her surgery went beautifully.  Let's hope that trend continues.  We now have to focus on getting through the next 48 hours, just as after our first surgery.  Dr. Mendeloff said that given how unpredictable our sweet princess is, only time will tell how well she does.  However, we know that we couldn't ask for the surgery to have gone smoother.  What a true GIFT from GOD.  Now it is time for her heart to do the rest.  

They are working to get her set back up in her room and once that is complete we should be able to be with her.  It will be an hour by hour journey for the next two days but we will be by her side.  

BACK IN SURGERY

It didn't take long for the doctors to realize that Charlotte was in trouble.  The blood flow to her lungs is too high and that means that the blood flow to the rest of her body is too low.  They monitored for a couple of hours to see if things improved but they did not.  Dr. Mendeloff decided that the only option at this point is another surgery to clamp off the Sano shunt and put in a BT shunt.  The Sano shunt is 5mm and the BT shunt that will be put in is 3mm so the hope is that it will reduce the flow of blood to the lungs and force more blood to be sent to the body.  Dr. Mendeloff said that in the hundreds of Norwood procedures that he has done that he has never had to do this before.  The team quickly got her ready for the move back to the OR.  We were able to walk with her through the hall and then kissed her goodbye.  They took her around 11:15 Central and expect the surgery to last for 2 to 3 hours.

This is it.  There are no more options after this.  Please pray for Charlotte.  

OUT OF SURGERY

Charlotte's out of surgery but certainly not out of the woods by any stretch.  She took a 'bit of a dip' when she came off because she started breathing fast which created more blood flow to her lungs.  This is not what we want bc in Charlotte's case, since she has a single ventricle, her first surgery last Wednesday created a new way for blood to travel to the body via a shunt.  Before, the blood flow was greater going to her lungs which is bad.  Because she started taking breaths after coming off ecmo, her heart rate increased which is NOT a good thing since it moves more blood to the lungs.  Until her body can regulate itself post surgery and balance the blood flow to the lungs and body, we need her to relax which is what she's going to do thanks to medication.  

She is critical for the next 48 hours and Dr. Mendeloff said that it's truly a balancing act at keeping her just right, much like the first 48 hours after last week's surgery.  Her situation is made even more challenging because of her small size.  She has made a stride in the right direction because she is better off not being on ecmo so at least we're heading in the right direction. Please pray for my precious baby girl.  And for us.  

LOVE, CHARLOTTE

THANK GOODNESS for being early!  We arrived at 645 this morning to spend time with little miss pre surgery and at 7, the OR team was raring to go so we left.  Charlotte was awake and as we held hands, I almost couldn't let go.  She has the tiniest little girl hands which kept squeezing mine.  I say, "Mommy squeeze, Baby squeeze" a thousand times a day from my bedside post usually.  It's never too early to start teaching, right?  Fortunately, she's stronger than Mommy is and as we left each other I know she was telling me that she'll be fine.  

Overnight she made us a Valentine - my favorite ever.  I'm so happy because this is her first footprint that I have to hold.  I know there will be many more which we make together, alongside her big brother, but today's will be my favorite.

My little Charlotte had a good night of rest, is tanked up, on the lowest flow possible on the ecmo machine and is ready to get this show on the road.  And today marks a very special day - it's her scheduled c-section delivery day.  I think it's another small miracle from God because it's her new beginning, her second birth.  Happy Birthday, Char Char.  Mommy and Daddy love you.


Add caption




Monday, February 13, 2012

CHANGE IN PLANS

We decided to come home tonight and try to get a good night of sleep so that we can be ready for a potentially very long day tomorrow.  Not long after getting home I heard Sarah's phone go off but since we have been setting various alarms on there for reminders that sound exactly like her ring tone I just figured it was a reminder for something.  Then the phone stops, and mine immediately starts ringing.  I recognized the number in an instant, it was the hospital.  I answered quickly and expected to hear Kelly, Charlotte's nurse tonight, on the line to tell us some urgent news.  It wasn't Kelly on the line, it was Dr. Mendeloff.  I nearly fell over, and I think he could tell. 

After saying his name I think the first words out of his mouth were "don't worry, nothing is wrong."  My heart settled back into my chest and he went on to tell us that he wanted to move Charlotte's surgery up from tomorrow afternoon to tomorrow morning.  He was previously scheduled to do another surgery tomorrow morning but it was moved to Wednesday and since Charlotte had done so well the past two days he wanted to go ahead and get her taken care of early in the day.  He will start with her at 8am tomorrow morning so we are headed back very early tomorrow to spend time with her prior to surgery.  

The surgery to remove the cannulas that are connecting her to the ECMO machine and have supported her life for the past few days will not take long to remove but her battle to support her own life will be long.  It will not be an easy day for her and there is no question that she will have ups and downs throughout the day.  We pray that she has the strength to support her own life and for her to take a small step towards coming home.  

Tomorrow, Valentines Day, please take a moment to pray for Charlotte.  Please pray for her heart, for her strength, and for her will to fight and take advantage of this second chance at life.  

UNCHANGED AND NORMAL

The head ultrasound showed to be UNCHANGED and the abdominal ultrasound is NORMAL.  PRAISE HIM.

"May the God of all hope fill you with all joy and peace in believing, so that you may abound in hope by the power of the Holy Spirit.  

Romans 15:13





WEANING

Today's main goal is weaning Miss Charlotte from ecmo, or as I call it "the blood machine."  Her body has had a good day and night of rest and we're hoping that her kidneys only continue to function well as she is slowly weaned.  The goal to be off ecmo is tomorrow afternoon.  Our PRAYERS are for a smooth transition as well as for the obvious: that Sweet Charlotte's body got the rest that it needed while on ecmo.  

Her swelling has reduced a lot overnight.  A huge praise!!  She is still swollen in her face and neck but it has started to lessen around her eyes and nose at least.  Makes Mommy happy for her.  Granted, she's on a lot of happy medicine, so she shouldn't feel anything but nonetheless.  It's like what brushed hair and a clean face on your toddler will do for a mother, right? 

She's currently getting her head ultrasound to check on the bleeding.  Again, we PRAY that it hasn't gotten worse.  We are waiting for the 72 hour infection results.  PRAY for another negative result.  She will have a vascular ultrasound on her abdomen due to something found on a previous one.  It may be a cluster of blood vessels or just one that had been poked and is angry, but it needs to be looked at.  We PRAY that it doesn't need attention, regardless of what it is!  

We've enjoyed the past 24 hours of 'quiet.'  Charlotte is doing what she is supposed to and this not only makes me proud of her but also relaxed.  We continue to pray for God's healing touch and for the doctors' wisdom as they care for our precious one today on her 10 day birthday as well as for the days to come.


Sunday, February 12, 2012

I SEE YOU

Always have the editor-in-chief check your work before it is published.  I left out some important information in my post from this morning and I am probably lucky to still have my staff writing position.  Sometimes my mind tries to focus so much on trying to understand the medical part that I skip over some of the very important items that don't always come with a number attached.

Charlotte opened her eyes this morning.  She has been looking at Mommy (and once in a while at Dad) off and on for the past few hours.  She also moved her hands and feet just a little.  There has been a slight reduction in her swelling as well, which is great to see.  It is amazing to see the little signs of life returning to her body.  She is still on ECMO and the risks are still very high over the next couple of days but it warms the heart beyond belief to see her little eyes looking back at you.

And, they just got back the 48 hour results on the cultures they sent out on Friday and there are no signs of an infection.  This is VERY good news.

SUNDAY MORNING UPDATE

Charlotte had a good night last night.  Lactates are low and there was no measurable increase in bleeding in her brain.  They were not able to get the flow down significantly on ECMO but were able to come down just a bit.  Dr. Fanning was pleased and is going to try to take it down a little more today.  Yesterday it was at 200 and they tried to get it down to 170.  They ended up settling on about 185.  Today Dr. Fanning wants to try to get somewhere between 120 and 150.

The plan for today is to watch very carefully as they gradually go down on the flow to see what happens.  There is a constant eye on her blood pressure, RA pressure, and heart rate to see how she is handling things and then every four to six hours they check blood/gas to see where we stand.  Hopefully things will go well.

Saturday, February 11, 2012

SMALL VICTORIES

A lot has gone on today but not a whole lot has happened.  There seems to be some very cautious optimism coming from the doctors as a few things have gone Charlotte's way today.  Lactates are down, urine production is up, and the bleeding has not increased.  These are all positive developments and hopefully are not simply an artifact that comes along with using ECMO.  

It has been a long day of waiting.  The coming and going of Charlotte's team of care givers certainly slowed down as we moved through the day.  We started off with fairly frequent visits from Dr. Mendeloff and Dr. Fanning but as they grew more pleased with what they saw from Charlotte, we got to see a little less of them.  Dr. Stegall is on tonight and they are going to try to back her off of ECMO just a little to see how she reacts.  Even if she tolerates doing a little more work on her own it will still be a few days before they would take her off of it completely.  They just made the first reduction in flow and everything looked ok on the monitors but the true measure will be the lab work that is run about 4 to 6 hours from now (it's currently 9:30pm Central).  Of course, all of this is moot if the sono tomorrow morning indicates that the bleeding in her brain has increased (it remained a grade 2 as of this morning which was great).  

We are in a complicated relationship with ECMO right now.  It is really giving Charlotte a nice break and has certainly helped her situation over the past 24 hours but we know that Charlotte is going to need to do this on her own at some point.  Its hard to know that you can't get too excited about the small victories that are happening right now because there is a time approaching very quickly where ECMO will go away and she won't be able to rely on it to help her out.  I don't know if that makes much sense to people but it really is an odd feeling.  

So, things are good right now and we are cautiously optimistic about what will happen over the next day or two but there is still a nagging fear in my head that I am going to look up at some point and see more than 2 people standing in my child's room.  

ROUNDS

We just listened in on rounds this morning and met with Dr. Mendeloff.  As Patrick said, overall her night was 'stable,' but much like yesterday, we are taking it hour by hour.  She's certainly not out of the woods by any means, but she is improving in a few areas.  

A PRAISE is that her heart is ejecting a bit which is a good sign of decent heart function.  We pray that this continues.  Many children on ecmo don't show signs of this for a day or two, so our Charlotte is inching ahead.  Another PRAISE is that her head ultrasound shows that the bleeding has increased slightly but is still considered STABLE.  PRAISE JESUS.  It's not likely to decrease due to it taking some time to do, but we want it to stay STABLE.  Now that her kidneys are getting enough blood flow, she is starting to produce urine, although slightly.  Still a huge PRAISE, and we pray that it increases.  The important take away is that it looks better.

Right now, we are checking for infection.  Although the bacterial cultures have been negative so far, we will see if this continues over the next 24 hours.   PRAY FOR NO INFECTION.  It will be harder for her to come off ecmo if she has any.  The thought is that Charlotte's critical mass point happened a bit later than in the first 24 hours post surgery.  This is the point when Charlotte is the sickest post surgery.  Hopefully this is what yesterday was and although medicine couldn't reconcile it, ecmo hopefully can give her body time to heal and GET BETTER. 

Hopefully by later today or tonight, the perfusionist can start pulling off some fluids to help with her swelling.  My poor baby.  There's really nothing that can prepare a mother to see her baby double in size due to swelling, especially to her sweet face and neck.  Dr. M says that provided she is stable through Monday, we will then plan to wean her from ecmo which will take 12-24 hours to do.  

SO...today, we are watching the bleeding in her brain, the infection to declare if it's going to get worse or better and watch her kidney/urine output.  I can't stress enough how serious her situation is.  It's absolutely amazing to see the small village it takes of medical staff, medicine and machinery that it is taking to keep my Sweet Charlotte baby alive.  

I never thought in a million years that we would be going through something like this but I have to remember that God's plan is a perfect one and trust in Him.  We pray that God who is mighty continues to show us what He is capable of and that He breathe life into her little body. We ask that He who is in control over each detail of the life of Charlotte, hold and heal my precious one.  We pray that His peace passes understanding over Patrick and me and that we remember He will never forsake us. 

Here is a pic of CHARLOTTE ROSE on her baptism day pre-surgery...


MORNING UPDATE

Charlotte made it through the night without any major issues.  Her lactates are down under 4 which is a huge improvement and she even managed to make some urine.  Overall it was a good night for her.  The next big step is to find out how the bleeding in her brain is doing.  The tech just came in and did the sono so now we just need to wait for the doctor to read it.  We really need the bleeding to stay under control so she can stay on ECMO for a few days.  We should find out what the plan is in the next hour or two I think.

Friday, February 10, 2012

TIME TO TAKE A BREAK

Charlotte can now officially take a break for a while.  Dr. Mendeloff was able to successfully get her hooked up on ECMO (Extra Corporeal Membrane Oxygenation).  This heart/lung bypass machine will give her little heart and lungs a chance to rest and hopefully recover enough to be able to function properly when the time comes.  She seems to be stabilizing so now we will wait.  Wait to see if her lactates come down, wait to see if she can produce some urine, wait to see how she handles a reduction in some of her medicines, wait to see if the bleeding in her brain will stay under control, and wait to see how hard she can fight.  The woods are all around but a path has been laid out for her to walk.  Now we have to wait and see how far down that path she can go.

And please pass the blog along to anyone that you know, we can use as many prayers as we can get right now.  It's also a nice break to check every once in a while to see how many people have viewed it.  

TIME

Time is a funny thing.  This morning the last thing on anyone's mind was putting Charlotte on ecmo and now that's exactly where she's headed.  As Patrick has kept you informed, Char Char (a name Big Brother has given her), has declined all day.  The last reading showed that her lactic acid had increased yet again.  This time to 9.2.  Certainly not the highest of the day, but given the fact that her kidneys are not producing any tee-tee to put it in "laymen speak," and among many other factors, Dr. Mendeloff has decided that her only chance at survival is to be put on ecmo.  

So as "well" as Miss Charlotte has been doing, especially given her small size, at the end of Day 2, we find ourselves needing more time.  We are hopeful and pray that this aides in her recovery and she is weaned off successfully.  We know that God's perfectly made plan is firmly in place and that He is the Great Healer.  We pray for a successful next few days so Char Char is able to come off ecmo, get healthy and head home.  

As always, we thank you for your CONTINUED PRAYERS.  

6PM UPDATE

Latest labs came back ok.  Not really getting better but stabilizing.  That made Dr. Mendeloff happy enough to send the OR team home so it is certainly a bit of good news.  She is still in a pretty tough spot but it is better than it was 2 hours ago.  Long night ahead of her though.  They are going to do labs every 45 min to 1 hour and the OR team is on call to be able to get Charlotte hooked up to the bypass machine if needed.

TWISTS AND TURNS

Things can change on a dime.  We learned that lesson this afternoon.  The labs had started to get a little better and then around 3 Charlotte's blood pressure went way down and the her lab work suddenly looked bad.

We had gone out to the waiting room to try and eat some lunch (you cant eat inside the Unit) and we were probably gone a total of 15 minutes.  Sarah had to make a quick stop over in the other building so I went back in by myself.  As soon as I rounded the corner I could tell something was wrong.  Dr. Mendeloff, Dr. Fanning, Dr. Virma, multiple RNs and others were in our room.  The first thing I did was to look up at her main monitor to make sure there was nothing obviously wrong.  There wasn't anything obvious to me but there were certainly things that were obvious to our group of doctors.  Charlotte's blood pressure was down and her lactic acid levels were up.

The team seemed to think that the best thing to do at this point was to put her back on the heart/lung bypass machine to give her heart a long period of rest to hopefully heal itself to a point where it would be able to function properly.  The big issue with going on bypass is that they will have to give her a blood thinner so that the blood doesn't clot while outside the body and during a test this afternoon they found two spots where she has bleeding in the brain.  The bleeding is not terribly uncommon and would not be a problem if they did not have to give her blood thinners.  They are trying to figure out exactly what we are going to do next.  There are so many eyes on her monitors right now and everyone waits to see what the lab work says each hour.  Charlotte is fighting her little tail off right now and hopefully she won't have to go on the bypass machine.  Dr. Mendeloff said that if she goes back on the bypass machine at this point that her odds of surviving are about 50-50.

SEARCHING FOR ANSWERS

Charlotte's lactic acid level went all the way up to 9.9 for the noon tests but then dropped just slightly to 9.1 on the 1pm tests.  They are still trying to figure out why this is happening.  They are looking at xrays, ultrasounds, and echos of her liver, kidneys, and heart and will hopefully have an answer soon.  In the mean time she seemed to have responded slightly to the last adjustment to her medicine so they have upped a couple of the meds and hopefully the 2pm labs will show an additional improvement.  

A few days ago one of the nurses told us that you could typically tell how things were going by the number of people who are in the room.  We have had a lot of visitors the past few hours.  Please pray for Charlotte.  

DEEPER INTO THE WOODS

PLEASE PRAY.  Charlotte's lactic acid level continues to be on the rise and is a 9, with 10 being 'the scary number.'  This can be caused by her kidney and liver not metabolizing out the nastiness that it needs to be.  We REALLY need them to start kicking into gear.  We will know more at Noon.

CHARLOTTE'S DAY: PRAYER REQUESTS

Okay people...let's start praying.  Her kidneys and liver aren't behaving, although her kidney function is still in the realm of post surgery expectations but her her liver may or may not be in that realm.  Dr. Fanning is going to decrease her oxygen in an effort to sedate her (it sounds off, but it relaxes her muscles so she can rest) to see if we can get a better idea of what's going on.  The next test will be at 11.  She has been holding her own but over the last 2 hours, there is cause for concern based on a substantial increase in her her kidney and liver function.   

SO...PRAYER REQUESTS:

Pray for her kidney function to improve.
Pray for her liver function to improve.
Pray for her blood pressure to improve.

Thursday, February 9, 2012

INCHING ALONG


Miss Charlotte has given Mommy the best birthday present yet: surviving!  As Patrick wrote, she is certainly not out of the woods, but she is holding her own.  I marvel at her strength, as do most of her caretakers, given her small size and the incredible obstacles she faces.  

She is swollen around her eyes, face and neck but we expect it to until tomorrow when it usually peaks post surgery.  Our biggest gift of all today is that she has opened her eyes a lot!!!  She's not dialed in but she certainly understands that Mommy is near.  This, along with body movement that she has, is important too.  Don't worry, she's heavily medicated for pain.

Dr. M told us that stability - not progress - is our goal for today.  Charlotte is riding the waves within the "it's expected due to surgery" range.  These are still very serious "somethings" but she is hanging in there.  I wish that I could simply put just how amazing her little body is.  She is only 7 days old and has already had a major heart surgery.  Those things shouldn't be in the same sentence, yet they are.  

I remember seeing a picture of a surgeon performing a surgery with Jesus standing behind him.  His hand was resting on the surgeon's shoulder.  I know that Jesus led Dr. Mendeloff during Charlotte's surgery and I know that He has never left her side since.  Just take a look at what she can accomplish thanks to Him.  He is the Great Healer.








DAY 1 PART 1

Today is officially considered day 1 of Charlotte's recovery.  She made it through the night with no major issues but she is certainly not out of the woods yet.  She has a dedicated nurse who doesn't leave her side.  They are doing lab work every hour as they continue to monitor her progress.  Most things look good and those that look a little off are dealt with quickly.  The level of knowledge, dedication, compassion, and energy of every single person involved with Charlotte's care right now absolutely blows me away.  I am really starting to question whether or not some of these people, especially Dr. Mendeloff, ever sleep.  

Sometimes I seriously feel like I am in an episode of Grey's Anatomy (sorry, its the only hospital show I've seen) as every few minutes something is beeping and people are saying words that have no meaning to me.  I told Sarah that I want to yell out "give me 10 cc's, Stat!" just to see what happens.  And one last thing.......

HAPPY BIRTHDAY SARAH!!!!  I LOVE YOU!  

Wednesday, February 8, 2012

OUT OF SURGERY

Dr. Mendeloff came out and to meet with us around 3:45 and let us know that Charlotte had made it through her first surgery.  Overall he was pleased with the way that things went but stressed that the next 48 to 72 hours are the critical time.  

We got our first look at her as the team rolled her from the OR to the Intensive Care section of the Congenital Heart Surgery Unit.  We only had about 15 seconds, her chest was still open (though covered), she had more IVs in her than I could count, and she was being given air by one of the doctors because she wont be able to breathe on her own for a few days but seeing her alive after surgery was the most beautiful thing I have ever seen.  

I'm sure Sarah will provide a much better update in a post in the next few hours.  

2 IN 1

UPDATE: Dr. M's NP just reported that Charlotte's procedure is going well!!  PRAISE JESUS.  She is being sewn up now and her body is being warmed back up in preparation for her to be taken off the bypass.  It should be about 230/3 when we can see her, before she gets settled in her room.  We hope to hear more details about the surgery once Dr. M starts talking, but he is still very focused and hasn't started "sharing" yet.  Soon...

......

Around Noon, Dr. Mendeloff was halfway through the surgical portion of today.  Little Miss is still on the bypass machine during this time.  Once he has finished sewing, he will stay with Charlotte as she comes off heart/lung bypass.  We pray specifically that God gives her the vigor she needs to get through this critical stage of her heart and lungs doing the big job without the machine.  We anticipate the surgical process to be completed by around 3, hopefully sooner!  Once the surgery is completed, she will be wheeled through the hallway from the OR to the CHSU (Congenital Heart Surgery Unit) where she will be until we HEAD HOME.  We'll get to see her for a minute or two and "give her a kiss" before heading back.  She'll need about another 90 minutes to get settled and then we're free to see her ALL THE TIME.  Word.

As always, Patrick and I appreciate your kind words, treats and prayers.  They continue to carry us throughout.

SHORTEST UPDATE EVER

The nurse called and said everything is going well but didn't provide any details. Said she would call again in an hour or two.

PICTURES