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.

Urgent prayer request...

Since Grace has NEVER followed the typical path and always seems to be the exception, we shouldn't be surprised by her latest antics...  Since Grace's invasive tests yesterday she has just not been herself, which is typical for her (it usually takes her a day and a half after an invasive proceedure, shots, etc to get back to her normal self), but Grace didn't get the memo that this is no time for funny business because if there is even a hint of her being sick they will postpone surgery.  That is so hard for us to wrap our minds around because that means surgery would be some time next week, I'm suppose to go home on Tuesday and I can't imagine not going home at my scheduled time because it would crush Abby and Andrew, but I can't not be here for surgery...  It doesn't seem like there are many good options, but we trust God's already got it all figured out.  We called the hospital this morning to let them know that Grace has had a cough since her procedure yesterday, so they called her cardiologist and he wants to see us in clinic tomorrow morning at 7:30 am to take a look at her white blood cell count (if it's high, it means something is brewing and we need to postpone surgery) and get a chest x-ray.  Will you please, please, please pray that everything looks good at tomorrow's appointment and we can proceed with surgery on Friday morning (Lord willing of course :-)?

Here is little miss happy pants after we got back from a walk down to Fenway Park...

THANK YOU!!!  XOXO

First three days in Boston...

3 days in one post...

We made it through the dreaded goodbye's on Sunday...

Grace did a great job on the 3 hour and 15 minute flight...

Day 1- Our pre-op appointments went great except that Grace didn't love the sweet male nurse that had to take her vitals, EKG, etc, so she got herself so upset that she honked...  Aside from that, the rest of the appointment went great.  We were grateful that her cardiologist (whom we ADORE) said repeatedly how impressed and perplexed he was by Grace...  He couldn't believe how great she looked, from her size (she's in the 50th percentile on the Up's chart for height and weight), how pink she was (or should I say, not as blue as he would expect) for having an average oxygen saturation of 82%, and for how well she appeared to be handling the repairs that they did on her last surgery.  These are all praises that are a direct result of answered prayers lifted up by our sweet village!

We got to take in the beauty of Fall in the North East, as we took a walk on a trail just down the street from the hospital...

Today was a much longer day than I expected...  We checked into the hospital at 7 am and didn't leave until 7 pm.  Grace had an MRI, transesophagial echo, and heart catheter (all while intubated and sedated).  Since she underwent an invasive procedure, they had to monitor her for 6 hours after it was completed.  

Here is Grace as we wait for her to get drunk enough for the Dr's to take her back without too much separation anxiety (by Gracie or Mommy :-)...

Annnnnndddd... She's wasted...  

The results from all of these tests reflected more praiseworthy news.  Her left ventricle has grown and is functioning well, the other areas of her heart and lungs look good too.  The main source of concern (which was no surprise to us at all) is her silly mitral valve.  We are praising The Lord that it appears to have grown and the gradient across the mitral valve was 10 which is better than it has been over the past 7 months in Texas and exactly the same as it was when we left Boston after her last surgery.  The question going into surgery is how to address the stenosis of the mitral valve.  Are they able to repair it or do they need to replace it?  If they need to replace it, which valve do they replace it with (there are pros and cons of both, so it's trying to pick the lesser of two evils)?  Will you please pray for wisdom for the Dr's and that God makes His will clear as to what is best long term for our sweet Gracie Doo?  Our surgery date was moved to Friday due to our surgeon's schedule.  Will you please pray that, Lord willing, our surgery doesn't get postponed any further?  One last prayer request I promise...  Will you please pray that Grace is healthy and doesn't have any sort of infection brewing because that would further delay surgery?  She appears normal, except that the anesthesiologist said that they got a bunch of yellow mucous when they extubated her and since being back in our hotel room she has spit up a couple of times and is coughing some.  We feel like the mucous is just all the post nasal drainage she has had lately (maybe allergies) and we are praying that the cough and spitting up is just a result of being intubated today and being a little nauseous from all of the anesthesia.  Thank you prayer warriors!!! We are praying that you feel an extra measure of our love and appeciation today and everyday because your prayers, texts, e-mails, and random acts of kindness are so often the fuel that keeps us going during this trying time.  (((BIG HUGS))) to each of you!