Saturday, March 31, 2012


Charlotte is walking the walk!  Her cultures are NEGATIVE again today!  AND...we are shooting to have her surgery next week sometime.  As long as we have negative cultures and she looks good, it's a GO.  I may or may not be drooling - I'm just saying...

Friday, March 30, 2012


Her cultures are negative today - brain shunt included!  And we got the official word that after 10 days of antibiotic/after her last positive culture, Charlotte will be eligible for her Gtube surgery.  This is GREAT news because it means that although she needs a 14 day course of antibiotic, she can 'overlap' the last 4 days with the gtube surgery recovery, vs having to wait a full 14 days and then have surgery and recover.  Music to this Mommy's ears.

Her right leg is swollen and the short explanation is that her old broviac line caused it.  We pray that the bloodflow redirects itself accordingly and the swelling decreases.  She is otherwise resting comfortably - well, as comfortably as one can rest with lines, sensors and cuffs slapped all over you!  I am truly amazed at having witnessed quite the turnaround in Charlotte's health.  His Hands are all over it.

May God bless each and every one whose lips have spoken a prayer for our Sweet Charlotte.  We are forever grateful.

Thursday, March 29, 2012


Someone decided it was time to extubate herself, but fortunately let the good doc do it for her.  Char Char wasted NO TIME in letting everyone know that she was ready to be without the breathing tube!  Missy was very vigorous, er...feisty, in her efforts.  Mommy calls it 'the feisty Italian' in her but however it's labeled, Baby Girl made it be known...and she did beautifully once she was extubated.  

The cultures came back NEGATIVE, including the shunt results.  HUGE PRAISE TO GOD.  We pray that they continue to be negative and that she is able to have her Gtube surgery on Day 10.  Other prayer requests are for Patrick Jr. dealing with missing Mommy (and Daddy too!) as well as for our family as we wait for her homecoming, with peaceful hearts.


Wednesday, March 28, 2012


Checking off as we go... She had her shunt tapped this morning and the prelim results show that there is not an infection. We won't know for sure until the 72 hour mark.  PRAY FOR NO INFECTION.  Her PICC line was surgically placed and the sedation/surgery went seamlessly.  Shortly following, her broviac line was removed successfully.  So now we wait on the cultures to come.  We pray for NEGATIVE CULTURES, seamless extubation tomorrow morning and supernatural healing that only HE can do.  


The culture came back positive.  She has to have her broviac line removed today and a new line called a PICC Line put in.  Yesterday's test which showed the 3D images of her veins revealed that the best vein is in her neck which is where the PICC will go.  It also revealed that her femoral veins are small and then widen which is good to know for her second surgery preliminary cath but annoying in that it will be more of a challenge to get a good look at her heart from the top (neck) area where she has better veins.  

The surgery for the PICC line will be around 230 pm today.  This is a trickier surgery considering that the "open" vein for the PICC line happens to be right next to her VT (brain) shunt.  

Her broviac line will be taken out with a local in her room sometime today.

Her shunt will be tapped by Dr. Swift sometime today.



NEGATIVE CULTURE TOMORROW.  (We start counting to 14 on the first day of a negative culture, as long as there are not 'positive' cultures after that.  Today's negative culture reset us to Day 0.)




Tuesday, March 27, 2012


Your prayers are working.  Her cultures are negative.  As of now based on the type of infection she has, the broviac line won't be removed, and the infection will be treated with the same antibiotic course of 14 days with the Gtube/Nissen surgery happening on Day 10.  This is provided Charlotte's overall 'state of the union' (stats) and negative cultures stay the same.  

Her shunt was tapped this morning but no fluid was pulled.  This is not a bad thing, as the shunt is working beautifully.  In fact, it is somewhat of a good sign considering if it were infected with a bad infection, most certainly would fluid be able to be pulled from it.  Because her blood levels, temperature and negative cultures continue to look as they are now, it allows the doctors to believe that the shunt has not been infected with the 6-weeker type of infection.  WE PRAY THAT THIS IS SO.

Currently, she is still intubated (breathing tube in) but only so because she hasn't fully awakened.  She woke up earlier this afternoon but really being awake, not so much.  If she awakens before midnight, she will be extubated, otherwise it will be tomorrow morning.  


But I have trusted in Your faithful love; my heart will rejoice in Your deliverance.  I will sing to the Lord because he has treated my generously.

Psalm 13:5-6

Monday, March 26, 2012


The culture is NEGATIVE, as in no cultures have grown.  Praying for tomorrow to bring the same.  

Tomorrow Charlotte will have her shunt 'tapped' in which the CSF (cerebral spinal fluid) is tested for infection.  3 scenarios can occur:

1. No infection!  This would result in a standard course of antibiotics for 14 days.  On day 10, she would be eligible to have the Gtube/Nissen surgery, doubling up on the last 4 days of antibiotic and recovery from surgery.  

2. Infection in shunt but treatable by antibiotics she's currently on.  14 days.

3. Infection which is NOT treatable by antibiotics alone.  Must surgically remove tubing of shunt and externally drain, clear infection and then surgically place the shunt again.  This option takes 6 weeks to run its antibiotic course.  Then, she is eligible to have Gtube/Nissen surgery.

Results from tapping the shunt should be available after 72 hours but the preliminary results typically guide you in the right direction meaning that we will have a good idea as to what the outcome is.

She will have a test done tomorrow which will take 3D images of the veins in her body to determine which is best to use as a broviac line.  Since hers doesn't draw blood anymore, we need a new one anyway not to mention if it is infected.  Typically if there is an infection, the line would be removed and there would be a wait period before surgically placing the new one.  Although in Charlotte's case, she doesn't have that luxury so the team will weigh the options based on the test results as well as the continued cultures and choose the 'right choice' for Charlotte.  

This test requires that Charlotte be intubated and sedated.  If it is determined that she needs to have the broviac removed and a new one put in, then she will stay intubated (breathing tube in) overnight before surgery on Wednesday (most likely.)  

She had a head and kidney ultrasound as well as an echocardiogram of her heart this morning.  All were negative of infection.  Word.

The urine culture from yesterday is positive today.  We won't know if the broviac line/bloodstream infection tainted the urine or she had a UTI which tainted the bloodstream.  Regardless, she's got a lot going on in her little body and we are SO FORTUNATE for her health today.  Although sick, yes, she is stable and we PRAISE HIM for this blessing.  

Sunday, March 25, 2012


Dr. Seuss is one of Patrick Jr.'s favorite authors.  In fact, it's almost all we read if he is choosing.  To keep up the family tradition, we read them to Charlotte too.  I just caught a glimpse of one entitled, "Put Me In A Zoo," and I think is fitting given the change of events which have unfolded today.

The storm broke this morning as I arrived at 730 am.  To get to the nuts and bolts of it all, her stats were trending poorly and she had a fever.  Based on overnight observations, a few labs (bloodwork and cultures) had already been sent off and we were thinking potential infection but because of her sudden and severe dip in stats, her docs acted fast.  Again.  She was given emergency IV drips of her 'heavy hitter' drugs including a wide spectrum antibiotic and blood as well as put on oxygen.  (She is only on air flow - ie, a nasal cannula - NOT a breathing machine.)  Additionally a blood gas was drawn and showed that her lactate (remember that NASTY word from many moons ago?) was high and at a 5.  To help put it into perspective, she was at a 9.9 when she was put on ecmo, the heart and lung bypass machine.  Yep.  

The true BLESSING in all of this is that she was stabilized relatively quickly and has remained so since shortly after discovering all of this nastiness. And 12 hours after her culture from one of the overnight tests, revealed that she has Gram Negative Sepsis.  People, people,'s the big bad ugly.  As in REALLY NASTY.  As in, if not treated almost immediately in people like Charlotte, ends in mortality.  Clearly this is not good news to hear BUT what is good is the PRAISE that we have to our GOOD GOD that she was stabilized and remains so.  

Where do we go from here?  We wait for the cultures of the tests to grow anything in the next 48 hours and given what is revealed, will determine how to move forward.  Potentially, given that Gram Negative Sepsis is a bloodstream infection, this could have infected her brain shunt (the VT shunt).  Again, based upon the cultures, etc, the neuros may move forward with tapping her VT shunt to see if it has been infected.  Tapping the shunt involves using a needle to puncture the shunt between her skull and skin to extract fluid.  If it reveals that there is infection, then the remedy would be to surgically remove the tubing, not the shunt because she needs it to live, and let it drain externally.  Once her body fights the infection, then it could be surgically placed back in.  We would then have to wait for 14 days before having the Gtube surgery, just as we are currently waiting it out.  Too if the infection has gotten into her spinal column fluid, a spinal tap would need to be done.  If the shunt is at all involved in this, then we are looking at potentially another MONTH BEFORE being able to have her Gtube surgery.  

I pray to travel the path with the least amount of resistance:  We pray for tomorrow's labs to show NO new cultures growing.  Again, we pray for them to be NEGATIVE, just like her fluid balance from weeks ago, right?!  If this is the case, then we can start counting from tomorrow, 7 days.  So next Monday, Charlotte could have her Gtube/Nissen surgery and therefore not bumped too far off from dare I say, "schedule."  

Don't you feel like saying, "what in the world happened here?!"  Well, this is not entirely uncommon given Charlotte's life course.  She has lived in the ICU and has had external hardware, ie like all of her lines which can be breeding grounds for infections, despite the best precautionary methods taken.  Most likely, her broviac line is the culprit.  WE PRAY that "this" was nipped in the bud early enough to not have steered her completely off course.  And to illustrate just how gross this infection is, the culture grew in 12 hours to reveal itself as Gram Negative Sepsis.  

So there are a lot of things to pray for but overall for Sweet Charlotte's comfort level.  In an effort to aide in administering medication and blood, an IV line was attempted 3 times to no avail.  Fortunately, Charlotte was calm the entire time as I talked to her about the warm sun that she got to feel yesterday and  her beautiful self lying in her pink polka dot blanket.  She was perfectly still...calm...relaxed.  We pray for this peace for Charlotte as she recoups.  We pray that she is able to recover swiftly and without complications like delayed stay, additional IV lines and her brain shunt being affected.  

In your prayers of THANKSGIVING, please remember our good doctors and nurses and the Mommy instinct that God continues to provide me.  I have been reminded that because of our quick response time, Charlotte is stable...and ready to be placed in my arms again.  There are MANY blessing here today, despite what I felt when we began this roller coaster ride yet once again.  Fortunately, I realize that God shines through all things, no matter how "pretty" or "ugly" they may appear.  He is GRACIOUS.  He is GOOD.  He will lead us through this with HIS LOVE.

Friday, March 23, 2012


Thanks to a little nudging by Mommy, Charlotte goes on walks around the unit every day.  She loves socializing during the first lap but by the second, she's well on her way to snooze town.  At least she gets a bit of mental stimulation with the new environment.  

And just as Charlotte enjoys social hour, she's quickly decided that being in the arms of those who adore her, is much more her style than lounging bedside.  So much so that she was rocked by her night nurse ALL night long yesterday.  It seems as though Char worked herself up and turned a dusky color of grey but after checking her stats as well as a blood gas (remember those?) which came back good, Dr. Stigall determined that Sweet Charlotte has it figured out.  Being in a set of arms is much better way of life.  I just wish that I could be there for her all the time.

Trust in the LORD with all thine heart; and lean not unto thine own understanding.  In all thy ways acknowledge him, and he shall direct thy paths.

Proverbs 3:5-6

Thursday, March 22, 2012


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

Wednesday, March 21, 2012


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

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

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

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

Tuesday, March 20, 2012


The pace around here is easy, and refreshing.  Sometimes frustrating because just as Charlotte is doing typical baby things like 'eating,' growing and crying her hoarse cries, she is a baby in the hospital and it's hard not being at home.  Nonetheless, she is doing what she's supposed to and making big, baby steps in the right direction.  (Growing being the most important, but also wearing clothes for the first time 2 days ago, sitting in a bouncer seat and being held in her Mommy's arms as I WALKED with her around the unit.) But, we still have a little less than 2 weeks BEFORE her surgery.  Arg.  I shouldn't complain because we are truly BLESSED with Sweet Charlotte's progress and health.

And soon, she will be able to meet her brother... and her dog.  And we'll all be home together.  I hope soon for my sake because I can't do this for much longer.  I need to call the shots.  I need to have my family of four under one roof, together.  I need her...HOME.

Monday, March 19, 2012


Witnessing the GREATNESS that is God's work.

Accidentally texting my priest instead of my 2 am...from lack of sleep.

Knowing that our baby is living and others, who were once like her, are no longer with us.

Sitting behind a curtain pumping while having a conversation with doctors and nurses.

Knowing how many people love and support us through prayer...hugs...and generosity.

That the journey for Charlotte doesn't end when we go's really only beginning.

Being in awe of the greatness that is...OUR DAUGHTER.

Friday, March 16, 2012


Already an overachiever in life, Charlotte has gained a bit over 3 ounces in 2 days!  It's music to our ears.  She's still struggling with keeping her feedings down, though.  As you can see, Char is strategically placed in her crib.  This fine, white straight jacket affair helps keep her in the inclined position which allows gravity to aide in digestion.  And since she loves to be swaddled tight (or at least as tight as her external hardware allows) she is certainly a candidate for this crib sling.  It almost looks like she is standing.  And I can always tell when her little body has smushed up inside it because she's inevitably slid out of her hat! 

Her Oral Therapist explains that Charlotte's reflux is so severe that the esophagus, which is more like an hour glass in design, is puffed open to "full column" from the sheer pressure of the reflux muscles pushing any and all contents in her stomach to head north.  Fortunately, her temporary feeding nasal tube goes past the stomach and is the remedy for keeping the majority of the actual formula in.

Regarding her brain shunt, it's continuing to look great.  Her 'brain doctors' tell us it's "beautiful."  That's certainly a word I understand!  And her head circumference continues to decrease in size, which is EXACTLY what we want it to do, as it is being relieved of the pressure which had built up because of the enlarged ventricles.  

Although Charlotte's journey is far from over, I've caught myself smiling again and again today and saying out loud, "Thank you, God."  Our life isn't without struggle, but I am so thankful and praise our good God for His love, His grace and His comfort during our time of need.  For when I needed Him most, He saved me...yet once again.

Thursday, March 15, 2012


As we adjust into our new life focused solely on growing, Charlotte seems to be playing the part.  Although she has had a few times today that she couldn't keep down her feedings, but overall she is tolerating well.  And, she even managed to gain 1 oz from yesterday!  CHECK.  She graduated into a hospital crib from her isolette but it seems HUGE.  Well, it is huge...for her.  

In a concentrated effort of keeping feeds down, she is being kept on a major incline.  And every time that I hear someone say "feeds," I feel like reminding them that we're talking about a baby, not a cow.  Nonetheless, I pray that the incline business helps her find some relief.  It's no fun to vomit, as we all know.  

We also have a gtube surgery date on the calendar: March 29 and counting.  In the meantime, our days will be marked with an oral stimulation plan, Charlotte modified "tummy time," and of course FEEDS.  

Wednesday, March 14, 2012


Change rolls through here like the Texas weather.  One day it's 80 degrees and sunny and the next it's threatening to snow.  Charlotte's renal scan proved to be a sunny spot yesterday.  After pursuing more renal testing, we are hopeful that it was the last of it.  Dr. Quan believes that the clots in Char's kidney's are caused from the central line used for IV access during the first few days of life.  However, they are not cause for concern, nor is the plan to treat anything more than nothing!  In fact, we are going down on the blood pressure medicine because it's such a non issue in terms of them affecting her blood pressure.   However, much like the weather, the focus quickly shifted to her GI tract after a fishy looking xray and a struggle for Charlotte to keep her feeds down all day.

She had an upper gastrointestinal study done this morning and it revealed that my Sweet Charlotte's anatomy of her intestines are normal!  There was concern with her intestines being twisted but fortunately NOT the case.  We also had a swallow study performed which proved to be less as encouraging.  Charlotte has severe reflux as well as having aspirated after swallowing once.  Now, she's never taken milk by mouth before so today was truly a first that she sucked on a bottle and swallowed.

Because of Char's condition, she's a candidate to get a gtube which is a feeding tube in her stomach, next to her belly button.  This is a good thing because it will allow us to go home and as Charlotte gains ever-important strength and weight, she will learn to suck-swallow-breathe.  This muscular reflex allows to drink from a bottle but until then, the gtube will be our ticket outta here!  Additionally because of her severe reflux, her esophagus will also be banded during the surgery in an effort to prevent the stomach from refluxing food.

Right now, she has a nasal feeding tube which goes into the duodenum, past the stomach, and she has resumed feeds.  The hope is that by feeding directly into the duodenum, she has a significantly less likely chance of vomiting entire feedings, rather just good 'ol fashioned occasional baby spit up.

Due to Charlotte's brain shunt surgery last Friday, she's not able to have abdominal surgery until 10 days post shunt.  We are on Day 4.  Additionally it takes about another 10 days post gastro surgery before discharge.  Since she is so incredibly tiny, she is not yet eligible for the gtube surgery.  Babies need to be at least 3 kilos and Char is about 2.45 kilos.  So for the next 10ish days, we will wait for Charlotte to grow.  We hope that after she has her surgery, she is able to prove herself to us all over again - with having had been reintubated for the surgery and then breathing on her own again.  We also pray that although with another 3 or so weeks still ahead of us, that this is the end of Charlotte's stop and go recovery.  We need our little family of four to be together...for the first time.

Tuesday, March 13, 2012


Charlotte's renal doc decided to move forward with additional testing.  A scan of her kidneys was done this afternoon and we're waiting on Dr. Q to let us know his thoughts.  

Also on schedule is an upper gastrointestinal study tomorrow morning.  Her intestines might be twisted which could be the reason why she can't keep her feeds down.  

We'll keep you posted as we know more.  As always, your prayers carry us.

Monday, March 12, 2012


We met with Dr. Quan, Charlotte's renal doctor, who reviewed her labs, history and her before recommending treating her higher blood pressure with medication.  He is still reviewing her ultrasound slides but as for now, I'm taking this recommendation and putting it in the win column.  

And like her blood pressure, her thyroid is a bit high but is being treated with medication.  Usually if I have a headache, I take Tylenol and in about 30 minutes expect that I'll feel better.  Up until now, that's been my approach to my ailments although with Charlotte she continues to deal with so much.  Although I pray that much like a headache, we are able to treat these and MOVE ON, for sanity's sake.  

"See, we count as blessed those who have endured...the Lord is very compassionate and merciful."

James 5:11

Sunday, March 11, 2012


One can never get too comfortable around here.  Just when I think the focus is on feeding and home, we have a detour, another "something" to handle.  It's been shared that we'll have a consult with the renal doctor tomorrow regarding his take on Char's kidney ultrasound from yesterday.  It is not "alarming," yet deserves a look by the renal team.  Can I be honest with you and say how disheartening this is for me?

Our prayers are for healing and for peace for Charlotte and our family.


Our littlest member is quite the performer!  She did great yesterday as she was extubated and successfully weaned from the nasal cannula which provides air flow.  She loves breathing "room air" and even flashed a grin or two at Mommy, not to mention pointing her little toes like a ballerina.  She must take after me.    

She's heading in the right direction now.  Our hope is that although bumpy, Friday was a turning point in Charlotte's recovery.  That she may now focus on learning to master the ever-important suck-swallow-breathe combination which she needs to eat.  With her small size, the shunt in her brain is quite noticeable and intrusive looking but will quickly fade away as she gains some weight.  She is a titch over 5 lbs now.  Perhaps if Mommy can consult with a hair stylist, we can come up with a game plan for a better hair cut!  Her surgery has left her beautiful hairs 're-styled' and Mommy just knows that a BOY did it - ahem.  And soon...PICTURES of our beautiful baby girl will be plastered all over thanks to NO open chest, NO breathing machine and NO random "hair cut."  I had visions of a first haircut with Miss Ginger, just as we had with Little P, but instead was reminded of our new normal when Char's locks of hair came back in a "hazardous waste" plastic baggie from the OR.  But I'll take a piece of normal any way you can cut it...

Friday, March 9, 2012


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, 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.  


Charlotte is back from surgery and everything went well.  The surgeons are happy with how she did, and that's good enough for me.  She came back intubated, which was not surprising, so now we will wait to see how long before she can come off again.  Once she is able to wake up from the sedation they will consider extubating her. 

It is amazing to think of all that she has been through in the first 5 weeks of her life and now we can add brain surgery to the list.  She is one tough little cookie, and we are certainly thankful for that. 


Charlotte was taken off for her surgery around 12:30.  The anesthesiologist had some trouble with her so he and the neuro decided to skip the MRI and head straight to surgery.  We're now waiting in her room for the neurosurgeons report back after surgery.  I'm hoping to hear from them by 2, but have started adding an hour to whatever time we're told, so I'd be surprised if we see them before 3 pm. 

I'm not sure how to feel about the neurosurgeons.  There are two who will perform the surgery who are exceptionally excited about their job.  It's like kids in a candy shop.  The younger of the two has a big grin every time he talks about what they are going to do to Charlotte.  Not in a bad way, rather an "I'm so happy to be at my job and can't wait to get to work" sort of grin.  Humorous really.

Thursday, March 8, 2012


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.  

Wednesday, March 7, 2012


Our Charlotte continues to impress - most of all, Mommy and Daddy!  She came off the ventilator on Monday afternoon and had a rocky start but nearly 48 hours later, she's still flying high.  I'm continually amazed at her strength and willpower.  Although teeny tiny, she is more powerful than we know thanks to our GOOD GOD.

Her vocal chords are damaged due to surgery and it will take time to heal so for now we hear hoarse whimper sounds, if any sound at all!  We are so GRATEFUL that she has mastered breathing on her own due to this issue because it's rather tricky since the vocal chords play a key role in breathing.  Since Charlotte's is damaged, it's like she has a 'slow leak' and it's hard to keep her lungs inflated enough to take another breath.  Again, a PRAISE to the Hands above which have shown yet once again what He is capable of.

Tomorrow is Char's follow up head ultrasound.  We pray that the ventricles in her brain which are swollen resolve on their own.  The neurosurgeon eluded to Char most likely having to undergo the surgery in which the shunt is placed in her brain to drain the excess fluid (which causes the swelling) and therefore alleviates the pressure in the brain.  Please pray with me for SUPERNATURAL HEALING.

This morning as Dr. Mendeloff made his rounds he remarked at what a remarkable transformation that his little girlfriend, Miss Charlotte, is making.  She's come so far from where she was, and I shudder thinking about what could have been.  But by the grace of our God, Char Char is defeating the odds, one baby step - and breath - at a time.  It makes this Mommy's heart skip a beat.

Monday, March 5, 2012


Today almost felt routine-like.  On Monday and Tuesdays, Little Patrick goes to Mother's Day Out and we've been able to manage Mommy dropping P off the last week - just like old times!  It's such a treat for me, especially since I was on bed rest for 6 weeks prior to Char's birth.  And although ultimately I leave him for the day, there's a peaceful feeling that I have as I walk out of the building.  It's peaceful because it's our old routine. And P feels it too.  

Charlotte's head scan this morning revealed that the ventricles in her brain very slightly increased in size.  The good news is that it's not enough to 'do' anything other than wait until Thursday for another ultrasound.  So my prayer request for today is for healing of Char's ventricles.  But of course I'll have to ask that you also call to mind Charlotte's EXTUBATION which should take place around NOON today.  That's all I can say about it right now.  Your prayers will carry her - and us - through it.

We are THANKFUL to God for His healing blessings and for the gifts that are my children: Patrick and Charlotte.

Sunday, March 4, 2012


Just as quickly as they come, they go.  Days, that is.  I'm certain that the past month could be tied in a pretty little package of about a week, although I know that what we've lived could certainly stretch well over a lifetime!  The good news is that even though we're working on month 2 in the hospital, the days go by fast and the faster they do, the quicker it will seem before we are HOME.  

Charlotte's day was about as uneventful as the last and it's just the way we like it around here!  We are hopeful that in the next day or two, she will be extubated.  Despite being more comfortable, she will likely tolerate her feedings better.  Not that she's having a hard time now necessarily, but certainly when a breathing tube is crammed down your throat, it would make anyone gag.  

Her head ultrasound happens tomorrow.  We are claiming healing.  End of story.  (Mommy has spoken...and when Mommy speaks, everyone listens, right?!)  Please pray that the ventricles in Charlotte's brain are resolving on their own so we don't have to intervene surgically. 

Although uneventful, today was MONUMENTAL for Mommy in that I had some alone time with my my arms.  Thanks to her good behavior lately, I was allowed the privilege of holding her with the ventilator.  PRAISE HIM.  It was glorious.  It was wonderful.  It was perfect.  I think I have a permanent neck cramp thanks to staring at her for the hour and half that I had her in my arms.  Of course, I don't mind at all.  And once she's extubated, she'll be right back in my arms tomorrow...and the next day...and the next.

Until then...

Saturday, March 3, 2012


At this morning's chest ultrasound, we were shocked at the news that the fluid in Char's chest is GONE, especially since her diuretic cocktail had stopped yesterday.  Her doctor said that he was truly "shocked." And I ask you, how could it be anything less than by the Hand of God?!  I am speechless...and so is everyone else.  What a gift it is for Char Char!  Let's ask that all prayers for Charlotte be answered ESPECIALLY those for the continued healing of the  ventricles in her brain.  

She continues to wow on the CPAP trials and breathing settings on the ventilator.  The plan is to increase her feedings - which started last night - throughout the day and really focus on beefing her up before extubation.  The more calories, the better!  We will watch that the fluid in her chest doesn't reaccumulate after eating, which ties into the lymphatic system grouping of issues that we are dealing with.  This is also why she is on special formula vs Mommy's milk.  

Charlotte is 4 weeks old today!  Happy one month birthday to my little muffin.  I wonder if when she's older, she will remember being carried by God during all of this?  No matter, we will tell her that when we couldn't hold her, He did.

We hope that MONTH 2 brings many more relaxing days, happy days and days filled with feedings, clothes, and being HELD.  Although this month's best birthday gift is her accomplishment of being HERE.  What a rockstar she is.  I hope that she doesn't get a big head after all the times I've told her just how perfectly perfect she is.  Oh, and beautiful too.  Yup...definitely beautiful.

Can you tell that I'm smiling?  It's a good day.  

"Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge Him, and He will direct your paths."

Proverbs 3:5-6

Friday, March 2, 2012


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

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

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

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


Thursday, March 1, 2012


Seriously people...she's NEGATIVE AGAIN! I can't believe it. To help put this into perspective, when she was on ecmo, the team "scuffed" off (manually drained) fluid and was able to get large amounts like the 174 number she lost last night! I remember being told that they were scuffing off a lot the night before she came off ecmo to help get her down to fighting weight, if you will. It's absolutely incredible that she is doing this on her own now. She's shrinking right before our eyes. The past 2 mornings - today especially - have been incredible to walk in and see my old Char Char staring back at me. I might remind you that she has been on diuretics on and off this whole time, to no avail.

She will have a chest ultrasound tomorrow to determine if the fluid has decreased around her lungs. PRAY PRAY PRAY that it has. If not, she will need the pig tail catheters. And if once drained, she continues to have fluid build up in her chest, then the thoracic duct is the culprit with surgery being the fix. We pray that once drained, her chest stays so! Additionally, it will give her lungs a better chance not having to fight against that fluid build up when she is extubated again. All of this is married together.

I continue to struggle with just how to thank all of you for your constant prayers for my darling daughter. Truly, we are forever grateful to each and every person who has lifted her up in prayer. There aren't words to express our deep gratitude, as it's the most precious gift you could ever give us. From the bottom of my heart...thank you. God is shining not just through Charlotte but also in each of your hearts.

Weight: 5 lbs 7 oz
Diaper Size: Preemie size Small (the diaper is folded in half and the tabs overlap when fastened!)