I will take uneventful...

Because of the Lord’s great love we are not consumed,

    for his compassions never fail.

²³ 

They are new every morning;

    great is your faithfulness. 

Lamentations 3:22-23

I experienced this verse so very tangibly this morning...  Waking up, knowing that Grace is at Boston Children's Hospital, has provided me/us with a priceless peace and much gratitude!  Thank you Jesus!

Today was a pretty uneventful day (I welcome uneventful days at this point :-)! They just worked on getting more fluid off of Grace's lungs, replacing all of the potassium that she has lost from being so heavily diuresed (pulling fluid off of her lungs by making her pee a lot) and trying to keep her cO2 levels in check (when you are on a ventilator for an extended period of time, cO2 can become elevated because your breathing is being controlled by a machine, so your bodies natural ability to change the rate and depth of your breathing to get rid of extra cO2 is inhibited).  They also placed a PICC line (peripherally inserted central catheter) in preparation for her heart catheter tomorrow and possible surgery early next week. 

Pure sweetness...

Another blessing of the day is that, every tear I shed today, were tears of gratitude!  Gratitude for God's provision in getting Grace to Boston and for the out pour of love and support from each and every one of YOU!!!

PRAYER REQUESTS...

-for an uneventful heart catheter (no complications) and positive results (confirmation of good left ventricular function and no long term heart or lung damage) tomorrow.

-they are going to extubate Grace after the heart catheter tomorrow, so that means she (and David) are going to have to deal with the worst with drawl she has ever experienced :-(.  She will have been on heavy sedation medication for 9 days (that's the longest she's ever been sedated) and apparently TCH was using some super strong sedation medication that they try not to use at BCH because it's so hard to come off of (our poor little angel is going to need methadone and adavan to help wean her).  Please pray for the easiest wean possible!

-wisdom for her Dr's as it relates to a surgery date, what valve to use during surgery (there are 3 different options that all come with varying degrees of risk and benefit), who is the best person to place the valve, etc.

       *the valve that may be best for Grace is in short supply.  Please pray specifically that if in deed that is the best valve for Grace, it is readily available when she needs it.

-continued wisdom for when and if I should go to Boston (I just want to do what is best for Abby and Andrew as well as David and Grace).  In the event that surgery is on Monday or Tuesday, I'm considering going to Boston on Sunday or Monday and staying through the first 48 hours of her recovery (when she is most critical).

-strength for David and I as we yearn to see Grace's sweet and vibrant smile again soon.

Thanking God for each of you today and everyday!  

SERIOUSLY precious cargo delivered...

The crazy, red bull drinking butterflies that took up residence in my stomach today, finally took a rest when I got David's text at about 1:10 pm that they had landed safely and that Gracie did good on the flight (no complications).

Grace being loaded into the ambulance... next stop, Boston Children's Hospital!!!

It seems like Grace (just like her Mommy and Daddy) had a huge sigh of relief when she arrived to her home away from home...  BOSTON CHILDREN"S HOSPITAL!!!

Doesn't she look a lot less "rough" than she did this morning?  To God be the glory!

We are in no way out of the woods (Grace is still critically ill), but we are beyond grateful to have her in the place that can care for her (and us :-) like nobody else!  The best way to communicate how much BCH and our Dr's there (specifically Dr. Marx, Grace's Cardiologist) mean to us is to quote the text that David sent me shortly after getting Grace settled in there..  

"they are doing echo right now and Dr. Marx is in here too.  I felt like crying when I saw him (if I was a chick I would've) just because it felt so reassuring to see him."

We have spent the last week at TCH feeling beat up for having to constantly defend why we made the decision to take Grace to Boston.  Not to mention the doom and gloom attitude about her condition that haunted us day after day.  Therefore, getting Grace to Boston has changed everything... When David told Dr. Marx about what we were told by the Chief of Surgery at TCH (the checkmate comment), he looked flabbergasted and apologized that we had to endure that.  He is hopeful that a mitral valve replacement (which is still very risky) should take care of much of the problems that Grace is experiencing with her heart and lungs (that was his preliminary opinion based on a 3D echo, they still need to gain more information via a heart catheter to make the final call).  It appears that her problem isn't really mitral stenosis, but instead mitral regurgitation.  A huge gigantic praise is that the function of the left side of her heart is good and that is really super important (the left side of your heart does most of the work)!!!  They have scheduled a heart catheter (which has to take place before they can do surgery) for Friday because they want to work on getting her more stable before doing any invasive procedures.  If the heart catheter isn't until Friday, I'm not sure when they will do surgery because Dr. Marx also said that they needed to do something (surgery) sooner than later.  

PRAYER REQUESTS...

-they can get the fluid in Grace's lungs under control 

-that there hasn't been any permanent damage sustained to her heart or lungs 

-wisdom for Grace's team of Dr's as to what the next step(s) should be and when

-wisdom and strength as I try to juggle being here for Abby and Andrew and there for Grace and David

These two hunnies are the best distraction and source of joy during such an incredibly tough time...

I have so many stories and thoughts that I want to share with y'all, but they will have to wait because this momma is EXHAUSTED!!!  I wish that I could hug each and every one of your necks tonight, and thank you for ALL of your support (((BIG GIANT HUGS))).  The fight for Gracie Doo's life is far from over, but I have full confidence that...

so, please keep the prayers coming, sweet Village!

SERIOUSLY precious cargo in route...

Village, Today is the day that the Lord has made and I WILL rejoice and be glad in it, despite the fact that our sweet Gracie Doo looks really rough today...

Here is the Kangaroo Crew (transport team) getting her ready to head to the ambulance...

It took them a little longer to head out because when they transferred her from her crib to the to the gurney, her cO2 level went up, so they decided to give her a paralytic and let the vent do most of the work for her on the flight...

Here is God's provision in the form of a well equipped plane, capable medical team and the worlds best Daddy, carrying and caring for some SERIOUSLY precious cargo...

They took off at about 9:15 am and the flight should last 3 hours and 40 minutes!

I've been up since 4:15 this morning, your messages, texts and prayers have already blessed me greatly!  Just  knowing that I'm not alone and that you are already flooding heaven with prayers brings me much needed comfort.  I have been and will continue to fight (and trust me it's a fight) to keep my mind out of the gutter (fearing the "what if's?) and instead focus on...

What or who is true, noble, right, pure, lovely, admirable, excellent and praiseworthy...

AMEN!

Will you please continue to...

today and everyday until our Gracie Doo is healed (Lord willing)?

So, I'm hoping that I just the missed the memo and that puffy eyes at work is the latest fashion trend because if it is, I'm totally nailing it today :-)

THANK YOU!  Loving you all to pieces and can't imagine life without you, Village!

Today was a nail biter...

This is David- Today was a nail biter, below are two separate posts that Kristi wrote on Facebook:

"Prayer warriors... Please pray that if it's the Lord's will for Grace to get back to Boston, that insurance will approve her life flight ASAP! Her lungs have more fluid on them (despite aggressive lasiks), which is a sign that something needs to be done NOW, but insurance is dragging their feet! Thank you for standing in the gap for us!"

Then, around 2:30pm she was able to write this, "It is through grateful tears I type... The medical flight was approved!!!!!!! Praising God with all that I have! Thank you prayer warriors... The fight for Gracie isn't over so please pray for safe travel for her and David (and the rest of the crew of course) and that her Boston team, in God's strength, would have the wisdom and skill to fix our Gracie Doo's heart! Ephesians 3:21"

Grace and I were supposed to leave today, but the transport team was already transporting someone, so Grace is scheduled for tomorrow morning.  The Kangaroo Team (the transport team) came by the hospital tonight to let me know that since Boston is a longer trip, they will be in Grace's room before 7:00am to prepare her for transportation.  We will take an ambulance from TCH to Houston Hobby Airport and board one of TCH's personal jets.  Grace and I will be accompanied by two pilots, a nurse, a respiratory therapist, and a physician.  They will have an ambulance waiting for our arrival in Boston to transport us to Boston Children's Hospital.  

PRAYER REQUESTS

-For a safe flight with no complications for Grace

-Before going into surgery Grace will need a heart catheter (to measure various pressures in her heart), so please pray for good results on her catheter, especially for low pressures and good function in her left ventricle.

-Wisdom and skill for Grace's cardiologist and surgeon.

-Please pray for Grace's body and heart to recover from all that is going on inside of her right now.  The chief of cardiac surgery at TCH told us yesterday that if Grace's heart was a chess board, she is about to be in check mate.  We'll see what God has to say about that though.

Thank you so much for your prayers and comments.  They mean so much to us and amaze us at how much God cares for us through each and every one of you.

As we have had all sorts of thoughts and questions running through our mind this week, we have found tremendous comfort in the song "The Glorious Unfolding" on Steven Curtis Chapman's new album.  You need to listen to the song itself to get the full effect, but here are the lyrics below to get an idea:

Lay your head down tonight

Take a rest from the fight

Don’t try to figure it out

Just listen to what I’m whispering to your heart

‘Cause I know this is not

Anything like you thought

The story of your life was gonna be

And it feels like the end has started closing in on you

But it’s just not true

There’s so much of the story that’s still yet to unfold

And this is going to be a glorious unfolding

Just you wait and SEE and you will be amazed

You’ve just got to believe the story is so far from over

So hold on to every promise God has made to us

And watch this glorious unfolding

God’s plan from the start

For this world and your heart

Has been to show His glory and His grace

Forever revealing the depth and the beauty of

His unfailing Love

And the story has only begun

And this is going to be a glorious unfolding

Just you wait and SEE and you will be amazed

We’ve just got to believe the story is so far from over

So hold on to every promise God has made to us

And watch this glorious unfolding

We were made to run through fields of forever

Singing songs to our Savior and King

So let us remember this life we’re living

Is just the beginning of the beginning

Of this glorious unfolding

We will watch and SEE and we will be amazed

If we just keep on believing the story is so far from over

And hold on to every promise God has made to us

We’ll SEE the glorious unfolding

Just watch and SEE (unfolding)

This is just the beginning of the beginning (unfolding )

One step closer to the next step...

Today's events went something like this...

-Our cardiologist presented Grace's case at the Cardiology conference at 7:30 am.  The results were pretty much the same as what we discussed with her throughout the day yesterday, they believe that something must be done with the mitral valve, so it may make sense to go to Boston for that or they are willing to do their strategy at TCH (take down what was done on the last two surgeries and go to a single ventricle).  The only other thing that was brought up is the risk associated with flying Grace to Boston (it could cause worsening pulmonary hypertension, etc, so she could arrive in Boston less stable than she left TCH).

-The chief of Cardiovascular Surgery came by to talk to us and reiterate that he didn't want us to feel like they were kicking us out of TCH.  His visit would have been brief, but I opened my big mouth and asked his opinion about something (which probably wasn't my brightest move because I should have known what was going to come next).  He went on to highlight/rant that Grace was in bad shape, he was really mad at Boston and said that he would have never attempted the bi-vent like they did, as if it was a negligent decision on their part, etc.  I'm not saying that Boston is perfect (because nobody is), but you aren't #1 in pediatric cardiology year after year because you are negligent.  He did say that he wishes he was involved in our case from the beginning and that we had been treated differently at TCH before we made the decision to go to Boston.  Apparently, he has been made aware that we had a bad complication that should have never happened and our relationship with our old cardiologist led us to feel as though we had no say over Grace's care (we were originally just told what they were planning to do, rather than making us feel as though we were involved in the decision; my questions and concerns weren't really answered; and we would continually get inaccurate information, which made us very uncomfortable with the palliation that we were being offered at TCH.  Remember, our cardiologist warned us that the chief of surgery is passionate, persuasive, and charismatic, which he definitely was, but despite all that he had to say, we still feel more comfortable in Boston (in fact, our discussion may have even increased our comfort in going back to Boston- Lord willing of course).

-We have been praying without ceasing about what the Lord would have us do for the next step in Grace's care and we know that y'all have been faithfully lifting us up and covering us in prayer too.  At this point, we feel like it's Boston or bust; however, there is still just one detail that is holding us back at this moment and that is the insurance approval for the transport.  My insurance should cover the flight at 100% because we have clearly already met our max out of pocket, however, it's up to our insurance to decide if this qualifies as a "medical necessity."  Therefore, we continue to sit and wait for their decision...  the hope is that we will have a decision by tomorrow morning.  While that part of the story is so frustrating (the waiting game), we have prayed specifically that God's finger prints would be evidant all over the situation as a reminder that He is in it with us and leading us into His will.  He has done that in some pretty amazing ways, so I will share one with you right now and more to come...

***over the weekend I received a phone call that took my breath away and made me sob out of gratitude.  The VP of my Division at work called me to express her care and concern for Grace and our family.  She shared that they want to help alleviate any stress over the financial burden of getting Grace to Boston, if that is what's best for her and our family.  Her phone call was way more than just words because they put some serious feet behind their heart to help us out, by involving a number of senior leaders to troubleshoot; communicate with my insurance company; help get answers over the weekend about coverage (I was unable to talk to anyone from our insurance company because they are closed on the weekend for average Joe's like me :-); get an expedited review; and making sure that there isn't anything else that they could do to support us.  This was all done over the weekend, throughout the day today, and into the evening, on their free time!  I have always loved my job at Pfizer and have been beyond grateful for it, however, the support that I have received on every level (counterparts, my boss, regional manager, even the VP of our Division, and other senior leaders) has taken my love for Pfizer to a whole new level!  It's one thing to work for a great company, under great leadership, but for those leaders to demonstrate their genuine care, concern, and support for our little angel (and the rest of our family) during the toughest time in our lives is truly a priceless gift!!!

PRAYER REQUESTS...

-if it is indeed the Lord's will for us to go to Boston, that the insurance approval for the life flight would be approved and executed seamlessly

-if it is approved, that Grace and David would have a safe flight with no complications

-the kids and I would handle the separation from the rest of our Ducks well because we are all a little heart broken about being split up again under these circumstances (our Gracie Doo being in such a critical state and the uncertainty about the future)

Buzz, Woody and Bullseye came to visit Grace today (it's amazing what you can find in a Mom's purse)...

The story of my life :-)

Calling all prayer warriors...

******* MAJOR UPDATE AND PRAYER REQUEST...

-It has taken me all day to get a post together due to all different kinds of interruptions, so now that I almost have it done...  we just received some more information that means we have big decisions to make (so finishing my other post will have to wait)!!!

Our Cardiologist came in today (her day off) and spent the whole day at the hospital just for Grace (she's so sweet).  I asked her if it would make sense for Grace to have another echo done today since the last one was done right after "the wheels fell off" on Wednesday, in case things looked any different which would give them a more complete picture of Grace to present at the conference tomorrow.  She totally agreed, so Grace had an echo which showed that things were relatively unchanged from the previous echo; therefore, it is clear that something needs to be done with her heart because it just isn't happy.  At that point, we agreed that it probably makes the most sense to go back to Boston, assuming that my insurance would cover the super costly life flight, etc....  Then, she just came by again and shared with us that the head of the Cardiology Department said that he was concerned that the cost of flying Grace back to Boston could wipe us out financially, about the burden it would place on our family for Grace and David to go back to Boston for such an extended stay, and he doesn't want us to feel like they are kicking us out of TCH, so he wants to help.  Let me stop here and say that we are impressed with his leadership and grateful that he has expressed such care and concern for our family because we were sort of feeling abandoned. So, the surgery that he is offering is basically going back to where we were two surgeries ago, rather than trying to make the bi-vent repair work (remember they have totally different philosophies at TCH and Boston).  The difficulty in making this decision is that it is easier and less risky upfront to go TCH's route, however, the long term risk is greater.  If we go back to Boston now, and most likely have a mitral valve replacement, it is more risky up front, but if it works it will provide a better long term strategy (Lord willing).  Our heart and gut says to go back to Boston because we feel like the Lord led us there to begin with and we are so much more comfortable there, but we just want to make sure that, without a doubt, it is God's will and not our own preference in any way.  The team at TCH is still planing to meet tomorrow at 7:30 am to discuss our case, but at this point we pretty much already know our options (the meeting tomorrow will just solidify those options or throw another wrench in the road :-).  Will you please pray that God makes His will abundantly clear to us and that all obstacles would be removed either way?  Assuming that our insurance will approve the (very expensive) medical flight back to Boston, David and Grace could be on their way tomorrow afternoon or Tuesday morning!  It is so hard for me (and the kids) to wrap our minds around us all being split up again, especially in such high risk circumstances and through the Holidays (Andrew's birthday, Thanksgiving, Christmas...), but we trust that if it's God's will it won't just be ok, it will be good because God is good.  That's kind of the mantra in our house :-).

One of God's many sweet blessings today is that it just so happened that the kids got to come see Grace today because my sister in love took them to the Dynamo soccer game (which is near the hospital, making it a good pick up and drop off location).  In the event that David and Grace do go to Boston tomorrow, the timing couldn't have been more perfect!

Village we know that y'all have been standing in the gap for us this weekend because we have felt it and we just humbly ask that you please continue to flood heaven with prayers for wisdom, favor, healing, strength, peace, and joy as big decisions are being made and carried out.  THANK YOU!!!

Almost extubated...

Thank you to everyone for your continued prayers and support!  I (David) arrived at the hospital at 5:30am with the anticipation that Grace was going to be extubated, but when the attending arrived, he stated that he wasn't comfortable with that because her newest X-Ray revealed that the upper right lobe of her lungs had collapsed; therefore, no extubation so they could continue to give her support, pull off fluid, and help fix her collapsed lobe.  In order to prepare for possible extubation this morning, the nurses needed to begin taking Grace off her sedation so that her body would demonstrate that she could handle breathing on her own, so Grace was squirming all over the place, trying to turn on her tummy, reaching up with her hands to try and get the tubes out of her nose and mouth herself, and kicking her legs up in the air.  However, since the plans changed they had to start trying to resedate her, which is never a smooth process for Grace.  The nurses gave her the max dosage for all the sedatives that she was approved to get and Grace wasn't even fazed by it.  They kept having to get approval from the doctors to give her more sedation.  Finally, after two and a half hours of squirming, Grace settled down.  Another development for the day was a spiked temperature of 103.7, but by the time I left the hospital she was down to 99.1.  The doctors did not seem too troubled by that, since she is already on antibiotics and they have already sent off cultures to see if there is any infection (we are hoping it is just environmental, since she had a brief jump in temperature the day before as well and it went down quickly after she had the blankets taken off of her).

A tremendous blessing for the day was Kristi being able to talk with our cardiologist from Boston.  He expressed his sorrow for what is going on with Grace, his frustration with Grace having been discharged too early from Boston (while he was out of town speaking at a conference), and his preparedness to have a bed available in the ICU in Boston whenever it is needed.  Also, he provided Kristi with some hope in regards to the long-term plan for Grace.  He expressed that they would do whatever was needed for Grace.  They would be happy to talk with TCH and work with them on any treatment for Grace or if we wanted to come to Boston he stated that they were ready to have Grace back and prepared to do everything possible to try and get Grace the best outcome possible.  His mentality and approach was very different from what we have experienced at TCH thus far.  He provided us with hope compared to doom.

We would be grateful if you could continue praying for Grace's lungs to desaturate and her heart to be able to adapt to its new circulation; for wisdom on knowing what direction we should move (between treatment at TCH or Boston); and, if we do end up returning to Boston, for the ability to figure out the logistics of getting to there, since she would need to take a medical flight.

Thank you for being present with us on this journey!

(I apologize for not having any pictures...that's what happens when I post).