Post op day 2...

Agh!!!  They just did rounds and while we think that Grace is doing awesome (compared to... herself), the first thing the attending says is "I wish she was doing better and not so up and down."  I was taken back because, like I said, we think that she's doing great and all of the other feedback that we've gotten has been the same.  As the fellow began presenting the case and the attending got to hear that her mixed venous blood gas was good (meaning that the coldness of her extremities was more environmental versus poor cardiac output) and other labs looked good, he asked the fellow if "he wanted to declare it a victory."  The fellow was extremely hesitant, but they both agreed that she is doing great for Grace (certainly not "normal" or "perfect", but great for Grace and that is praiseworthy in our book :-).  This is exactly what happen last time we were here... they kept talking about extubating (taking her breathing tube out) tomorrow and then tomorrow became the next day and then the next day, etc until I had to go home before ever getting to see her extubated (but more importantly than just being extubated, I didn't get to hold her- BIG SAD FACE).  While she has the breathing tube in they have to keep her super sleepy because the second they lift the sedation a touch, as the night nurse put it when we called in the middle of the night to check on Grace, "I tried to wake her up a little and she woke up fast and was like an alligator" (you know how alligators do the alligator spin where they spin in circles?).  She certainly likes to keep everyone on their toes.  The main reason they can't extubate her yet is because they need to get a better hold on her fluid balance :-/.  Again, this is such a dance with Grace because you have to give her enough medication to pull fluid off, but not dry her out too much.  Will you please pray that her fluid balance would get under control quickly and that she would blow the Dr.'s and nurses away with how stable ALL of her numbers are and that she would stay comfortable (did I mention how much she HATES the breathing tube?).  It's also painful for us to watch her do what we call the "silent cry," where you can tell she's crying by looking at her face and body language, but you can't hear anything because of the breathing tube... no bueno :-(.

Enough with the... not ideal news and on to some praises...  They just took out her LA line (it measures the pressure in her left atrium) which is a number that I love to stare at on the monitor, so having that number no longer available will give me one less thing to obsess over and they also removed her chest tubes.  YAY!!!  

What a little angel, huh?

Yesterday, my angel of a Mother in Law face timed us during Abby's soccer game, so that we could watch her play (she scored two goals and blocked the other team from scoring a couples goals too), we are so proud of her!  We were watching the game from the back of Grace's room in the ICU and when Abby scored her first goal, David thought, maybe she can hear us (from across the soccer field on the phone while face timing), so he yelled "good job Abigail!!!" The nurse cracked up and I'm sure all 29 beds in the CVICU now know that Abigail scored a goal.  It was actually pretty cute and funny!  We also got to see Andrew playing in the mud at the soccer game (since they had a huge down pour right before the game started) and it was neat to see him having sooo much fun (when he saw us on facetime he didn't know if he should be happy or cry), please pray that the kids finish our time apart strong.  Another praise is that since Grace will still be intubated over night (and knocked out to avoid her doing alligator spins with her breathing tube in), David and I will get to have one more night of good sleep in the hotel room together and we will be able to go to church together tonight (Calvary Chapel has a church service in our hotel).  

So grateful that our God is sovereign and reigns over all this craziness! :-) 

Day 1 of the craziness of recovery...

They just did morning rounds and overall they were pleased with how Grace is doing!  I want to stop and praise The Lord for that...  however, the one thing that they are concerned about is that her extremities are very cold, so they are trying to figure out if it is environmental or is it that her heart isn't doing a great job of getting blood out to her arms and legs?  They are drawing labs to get a better idea of the cause as well as giving her fluids and a medication that will help with her circulation (the nurse said 90% of their patients are on this medication post surgery, so it's common).  Now for the scary, hairy part...  they are going to stop the paralytic and start to wake her up, so that she can start to breath on her own, but at the same time try to keep her comfortable.  This is really where our Gracie Doo becomes a mystery (at least in the past, so maybe she's matured out of her crazy ways :-).  In the past it has been SO difficult to wean her off the paralytic and down on the ventilator, but keep her comfortable and happy.  Will you please pray that she blows us all away with how amazingly well she does this transition and that her circulation isn't a problem at all?  It certainly doesn't hurt to ask, right?  And even if the answer is "no" we will praise Him anyway :-).

Once again, the power of prayer has been reflected in the joy and peace we felt when laying eyes on our little angel for the first time after surgery.  I feared that it would be a sad, scary time, but instead it was a joyous time and the only thing that we could comment on was how pink she looked!  Check out this pink little foot (this is the pinkest her tootsy has EVER looked)!  

So, I tried to convince David not to post the picture of Grace right after surgery on facebook yesterday, but he could not be convinced...  He was just so proud of Gracie Doo that he wanted the world to see how tough she is...  even if it makes some people want to honk looking at a baby with tubes and wires all over the place :-).  I apologize if these pictures make anyone uncomfortable, so this is a warning that a post op picture is posted below :-)

Notice she has her little friends proping up her arms...

More updates to come, they are shutting off the paralytic now, so I'm going to run...

T minus one hour until we get to see our little sweetie!

We just spoke with the surgeon and he successfully closed her VSD (hole between the ventricles), took off her pulmonary band and repaired the pulmonary artery that was a bit damaged from the band (that is common), and he was albe to repair her mital valve without having to replace it (yet :-).  He said that he is "satisfied" with the repair of her mitral valve.  Obviously, I would love to hear that he is super duper excited about it (that would be asking a lot, especailly since I have never met a surgeon that talks like that :-), but I'll take "satisfied" and praise The Lord all day and night.  The goal of this repair of her native mitral valve is to buy us as much time as possible before it needs to be replaced.  2 big prayer requests...  Will you please pray that her body handles her new circulation/repair amazingly well and that her mitral valve wouldn't give her any trouble (I know of a number of kids that have had to have the valve replaced just a couple weeks after having their native valve repaired because the child goes downhill shortly after surgery)?  We are beyond excited to go see our sweet Gracie Doo, but it is also one of the hardest parts of this journey, seeing your little angel all beat up after surgery (especially since we handed over a healthy (well, healthy for Grace :-), joyful, smiley little girl just 8 hours ago).  Thank you Village!!!  Now comes the next tough part of this adventure... recovery, but we trust that you will pray us through it and God will be in control :-)

Surgery Update #3

This is David...  Since our last update, Kristi and I were able to venture outside and enjoy a three mile walk in some beautiful weather.  As of our update at 3:00pm, the surgical team had finished up the surgery and had just taken Grace off of bypass.  We don't know the results of what the surgeon did with Grace's mitral valve, yet.  The nurse said that Dr. Pigula, Grace's surgeon, should be out within the next thirty to forty minutes to speak with us.  After we speak with Dr. Pigula, it should only be 30-45 minutes until we are able to see Grace in the CVICU.  Yeah!!!

Next update...

We were waiting for the update that she is now on the heart and lung bypass machine, but they forgot to call with that update, so not only is she already on bypass, but they are in the process of doing the repairs on her heart...  Please continue to pray!  Thank you!

IT'S SURGERY DAY!

First things first...  Y'all know how to bless and make a girl (and guy :-) feel loved!  Each and every text, phone call, facebook post, and e-mail has been an incredible reminder that we are not in this alone!  Please know that if you don't hear back from me right away, your message has NOT gone unnoticed or unappreciated, in fact the opposite is true, you have made a huge impact on my heart and made this journey that much easier as you bear this burden with us!

We checked in at 6:00 am and they took Grace back at about 7:30 am.  During that hour and a half every nurse, Dr, etc that we encountered loved on Grace and told her how beautiful she was, so Grace was all smiles and waving at everyone. 

They gave her the medicine that makes her drunk, so that the hand off process wasn't painful for her or us.  The medicine worked like a charm and within a few minutes Grace was wasted and we got to see once again what a happy drunk she is :-).  After they took her back, her surgeon, Dr. Pigula, came out to talk to us and it was a great conversation!  He didn't make us feel rushed a bit, answered all of my (many) questions thouroughly and when I told him that we have been/would be praying for him, he didn't look at me like I had 5 heads this time, but instead smiled and said "thank you!"  We got our first update at 9:30 that they had made the incision and we should get our next update around 11:00ish.

David and I have tangibly felt your prayers and God's promises in full effect this morning.  We have marveled at the peace that we have experienced so far, so please, please, please don't stop praying now becaue that peace can be threatened at any moment.  THANK YOU!!! WE LOVE YOU!!!

It looks like surgery is a GO for tomorrow...

We had our appointment this morning to make sure Grace's funny business won't impede her ability to have surgery tomorrow.  The Dr. said that her lungs sounded crystal clear (praise The Lord), her temperature was 100.1 (they didn't seem concerned about that at all), and they drew blood and said that they would call us if her white count was high (so no news is good news).  We haven't received a phone call yet (it's almost 5:00 pm our time, so we feel good about that!) and we called to confirm our surgery date and time (normal procedure to make sure they didn't have to bump us for another case, etc).  Lord willing, it looks like tomorrow will be the day...  We have to be at the hospital at 6:00 am and we are assuming that surgery will be roughly 6-8 hours.  They usually give us an update about every hour, so I will post updates throughout the day (at least that's my intention :-).

Thank you for praying with us through these uncertain circumstances.  Your prayers have been felt for which we are deeply grateful.  Please pray that it would be the Lord's hands and wisdom making decisions on the best way to mend Gracie's heart.  Please also pray for peace for David and I as we wait.... and continued peace, strength, and joy for Abigail and Andrew, since we are at the half way point of being apart (until I get to snuggle them).  

"Please also pray that it isn't long before my Mommy and Daddy can see my sweet smile again (and lots of them) because I can't really light up the room as well when I'm knocked out"

Love this reminder...  We aren't promised that the journey will be easy, but we are promised that Emanuel (means God with us) will go before us, never leaving nor foresaking us.