A NEW BEGINNING

I'd like to think of Charlotte's Gtube surgery as a new beginning for her.  She's already accomplished so much in her short little life and with this surgery, she will be able to accomplish so much more as she LIVES LIFE.  As a friend wrote me, how appropriate this good news is to share during Holy Week.  So true.  

And as I JUST heard from the surgeon's mouth, Charlotte did BEAUTIFULLY.  One of his best surgeries to date in fact as he gave thanks to God for the success.  GOD certainly hand picked HIS crew to lead Charlotte through this course, hasn't HE?  HE is good.  

She is getting settled in her room and soon we can be with her.  She'll be intubated (breathing tube in) possibly until tomorrow, but as we have learned from experience, everyone's favorite little muffin has a mind of her own, so we pray that she is able to rest comfortably until it is time to take it out!

Next on the agenda is for her to heal.  After all, this is major surgery.  She will be on a clear liquid diet for a day or so and then slowly increase her milk feedings.  As soon as she can show that she is consistently gaining weight, she will be DISCHARGED.  CAN I GET AN AMEN?!

So sing your song, SWEET CHARLOTTE.  We're all listening to what you're going to say...

RESCHEDULED

Great news!  Looks like there was an opening on the surgeon's calendar so Charlotte's surgery has been rescheduled for tomorrow, Thursday, at 730 am!  Happy Day.

Trust steadily in God, hope unswervingly, love extravagantly.

1 Corinthians 13:13

LIVE MAS

Live more.  I feel like Charlotte gets to lately.  She is more "baby like" now that she is better, and is able to experience basic needs in life like being HELD.  Fortunately, there is never a shortage of arms in which to cradle my SWEET CHARLOTTE.  We are so grateful for her baby cries and her baby ways.  

She had a better night last night, as she rested comfortably and SLEPT.  Still very bothered by diaper issues, she seems to be adjusting to her feedings overall.  And since her surgery is scheduled for Friday, we pray that she remains comfortable and healthy before...and after, as she will still have the PICC line until she is discharged.  Each day that she has a line, is another day of risk for infection.  We pray that He shields her from that and continues to hold her in HIS arms.  Prayers, too, for "Baby Patrick" that he may feel comforted by His peace.

And to read more about the Gtube and Nissen surgery, please go back to our "CARPE DIEM" post.  As always THANK YOU for all of your support and prayers!  

WEIGHING IN

Everyone's favorite little muffin is getting big, big, bigger!  She now weighs almost 5 lbs 7 oz!  We are so proud of her progress, and so are her docs.  She's a favorite around the unit because of her tiny cries, sweet face and princess self!  As much as we want to be home, the team here takes the best care of Sweet Charlotte.  She has the highest paid babysitters in the world, right? :)

The one IV line she has is called a broviac line.  Thankfully, it's lasted double the expectant time because when it was put in, her surgeon explained that Charlotte's anatomy is yet once again...different.  Her vein is like a varicose vein in that it is squiggly.  I liked his description because I understood "squiggly."  Needless to say, it could get the job done (ie, allow for blood draws and administer meds as another access point) but we weren't to expect it for long.  Well, here we are almost 4 weeks later!  Although today we discovered that it won't "draw," which means that it won't allow for blood draws.  The GOOD NEWS is that it will still flush medicines.  PRAISE HIM.  Our specific prayer is that it continues to provide this "access" for the upcoming surgery as it will be the line which will be used for sedation, etc.  Because she is so INCREDIBLY difficult to find access in her veins, this line needs to stay put so she doesn't unnecessarily have to endure another surgery!

In the interim, our little one will endure heel pricks twice weekly for her scheduled blood work, or labs.  She had her first this morning and baby girl DID NOT like it.  Not one bit.  But, she settled down immediately after she was swaddled.  Such my child.  We raise swaddlers, that's for sure.

We appreciate your prayers, as always.  She is thriving because of our GOOD and GRACIOUS GOD and thanks to YOUR PRAYERS.  I'll leave you with some candids of our Sweet Charlotte doing what she does best - sleeping and being precious!

LORD, be gracious to us!  We wait for You.  Be our strength every morning...

Isaiah 33:2

THE FANS WANT MORE

Our little muffin gave us a run for our money today...again!  I keep telling her Daddy to watch out, because 16 may be the ultimate test!  Either that or we will both be gray before 40.  As Patrick shared with you, Miss Char Char was a rat that had fortunately been sniffed out by the Great Dr. Kampine.  Along with Dr. Mendeloff, he is who I will be indebted to my whole life.  We'll call he and Dr. M, my HEROS.

Dr. K decided to intubate our Char Char in her ICU room versus the OR.  This foresight most likely saved our daughter's life.  The best way to describe it is when she was sedated, Sweet Charlotte 'tanked.'  Dr. Kampine said that in a matter of a second, her stats plummeted.  As in south in a hurry.  And since our good doctor can smell a rat from a mile away, he was in the right place to handle her antics appropriately because as he and the neuros tell me, it would have been a very different outcome had she been in OR while being sedated.  PRAISE JESUS YET ONCE AGAIN.  And of course our good Dr. Kampine for his incredible skill level - my word.  And given our 'readership' should be entertained as according to Patrick Sr., I think Char's antics have proven to be quite a show.  I hope we discontinue this series...STAT.  She needs to be on her best behavior from now on.

So once she was "stable," Dr. K found us in the waiting room.  He said that Miss Charlotte had misbehaved and so much so that based on what he had witnessed, the answer to our problems....er, the answer to our prayers was the brain shunt.  He advised us to bypass the MRI and head straight to surgery.  Dr. Swift then emerged announcing he was ready in the OR.  As a mother, I had a 'come to Jesus' moment as I stood in the waiting room with Charlotte's anesthesiologist and neuro as they spit out the urgency of my unstable baby's situation.  So we passed "Go" and headed straight to the OR.  And for the second time in Char's life, she behaved from the start.  Her body WELCOMED the shunt.  It was pleading for it much like her second heart surgery's shunt - the BT Shunt.  Dr. K remarked that in real time, her stats sky rocketed when the pressure in her brain was alleviated.  It truly is the ANSWER to our prayers.  So as I mentioned in the days before today, it is God's resolution and not a moment too soon.  PRAISE HIM.  

Sometimes I feel too "lucky" but then I realize that God's plan isn't about luck.  It's about living - no matter if here on earth or in heaven.  My Charlotte is a testament to that.  Through her, God has spoken.  He is CONSTANTLY showing us what HE is capable of, on HIS time.  Okay, God...I'm quietly listening.  

IT'S NOT ROCKET SCIENCE, BUT IT IS BRAIN SURGERY

It's ironic really.  You see I just prayed for swiftness in the resolution of the swelling in Charlotte's brain and when I walked in this morning, I found out that Dr. Swift would be the neurosurgeon who would perform the SURGERY.  After a long day of waiting, we know that the ventricles in her brain have enlarged enough to require an MRI and surgery following to correct.  And whereas before she showed no signs, it's as if overnight God made it known.

Usually I cup my hand around her head when I talk to her - it's more of a comfort for me to "hold" her as much as I can while she lies in her isolette.  When I did that this morning, I felt it.  Since a baby's skull isn't fused together, there's room to move when the baby grows.  Due to the swelling in her brain, her head circumference has increased a cm but isn't causing brain damage thanks to the bones in her head not being fused yet.  All of this is amazing really because I prayed for swiftness just last night and swiftness is what we've received today.  Thank you, Jesus.

When I think BIG PICTURE, I understand that in Charlotte's case, she will most likely have her second heart operation around 4-5 months old given the small size of shunt used in her heart (3 mm).  Since it is so tiny, she will outgrow it sooner than if it were larger.  Ultimately, we want her home quickly so that she has as much time as possible to GROW before her second surgery, called the Glenn.  Without having to wait and watch if the swelling lessens in Char's brain, we are afforded the luxury of focusing on learning to eat and getting HOME soon.  And although not the resolution which we had been praying for all this time, it is GOD'S RESOLUTION for Charlotte.  

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.  

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.  

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 

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.  

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

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

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.

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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.

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.

SMALL BLESSINGS, BIG MOUNTAIN

The past few days have been a whirlwind of excitement, blessings and tender moments wrapped into one.  Although a roller coaster of emotions, it's a ride that I'm glad to be on because we get to be with our Sweet Charlotte. 

We've experienced many small blessings along the way and continue to count more.  What seems to be a roadblock often times ends up paving the way for something greater. Take for instance the struggle with securing a secondary central line for Charlotte.  Thanks to finding a secondary IV line in her head yesterday, the medical team was able to surgically secure a central line in her groin which will aide in the surgery tomorrow.  We are calling this 'early surgery prep' and are pleased to be ahead of the game.

Her kidney oxygen content was running on the lower side but then corrected itself avoiding a blood transfusion on Saturday.  She will most likely have one this afternoon in preparation for tomorrow's surgery to restore what has been lost from blood draws and her surgical procedure yesterday.  

We were told not to expect to hold Baby Charlotte until our "one time hold" pre-surgery, yet I've already held my precious angel twice.  You can imagine my surprise on Saturday as she was placed in my arms.  And again on Sunday. Or, the true joy that Patrick and I experienced as we witnessed our priest baptize Charlotte yesterday afternoon.  I will never be able to explain the feeling I felt as I stood there with Father, Patrick and our baby girl.  Not to mention the peace that filled my heart as Father anointed our sweet baby.  He spoke about the miraculous healing which came to another baby after she received the anointing of the sick sacrament.  Soon, I will be writing Charlotte's testimony of miraculous healing, just as sure as I am telling her to stop running in the house. I look forward to that.

With all of these small miracles under our belts, I know that tomorrow's surgery is a big mountain to climb, but Charlotte can do it.  Please pray for Dr. Mendleoff and his team as they operate on Sweet Charlotte.  Pray for an uncomplicated surgery and recovery period, which is the most critical time (first 72 hours post surgery.)  We pray that Charlotte recovers with minimal pain and suffering and that she feels His presence always.  Specifically, we pray for a SOFT DRAIN TUBE to be used which Charlotte will have post surgery.  This is for ease of removal post surgery as well as for her comfort.

The surgery begins bright and early tomorrow at 7:10 am and is about an 8 hour process. Please keep MISS CHARLOTTE in your prayers and in your hearts as God performs yet another miracle in healing her.