Answered prayers...

Answered prayers...  Yesterday we heard from Boston confirming our October 10th surgery date (we are so grateful it's official :-)! AND today at Grace's cardiology appointment, the pressure in her mitral valve was 15-16!!!  It has been 19 for the past 5 months, so the fact that it has gone down at all is amazing!  AND for the first time since seeing Grace's heart on her fetal ultrasound at 28 weeks we could clearly see 4 chambers of her heart.  Half the time we don't have a clue what we are seeing on the screen during echo's, but there was no mistaking the 4 chambers that we saw today.  Don't get me wrong, her heart is very far from "normal" or "well" and the high pressures in her heart can cause it to be dilated (bigger), which is not in itself good, but regardless of the reason, the shear fact that we got to see a picture of all 4 chambers is worthy of all kinds of praise!

Here is "the date crasher."  David and I had a date night on Saturday (we went to dinner, played games at home, and laughed a lot).  The big kids had a sleep over at my parents house, while Grace stayed home with us and was determined to be a part of date night since she boycotted bed time :-).

 

In case you're not on facebook and didn't see one of my favorite pictures that I posted yesterday, here are our sweet girls...

Where was Andrew while the girls were taking this picture?!?!  Saving the world dressed as Buzz Lightyear of course...

THANK YOU FOR YOUR LOVE AND PRAYERFUL SUPPORT!!!

It's all becoming so real now that we have a date...

While still technically tentative...  WE HAVE A SURGERY DATE!!!  We are waiting for scheduling to call to confirm the dates that they tentatively gave us last week are official, but at this point it looks like we will have pre-op on Monday, October 7th, MRI and Heart Catheter on Tuesday, October 8th and then surgery on Thursday, October 10th.  Now that we have dates, our flights out there, hotel booked, etc, it is starting to feel so real!  There really isn't a ton of planning that we can do outside of getting ourselves and Grace to Boston because there is no telling what the road will be like once we are there.  They say to plan on Grace being in the hospital for 2-3 months, so it's hard for me to wrap my mind (and heart) around the uncertainty of her recovery, being split up as a family, the kids starting a new school year during all the craziness (nothing can be more crazy than my water breaking just after dropping Abigail off on her FIRST day of Kindergarten last year), the financial side of this journey as a whole, etc, so we continue to cling tightly to the Lord trusting in His provision and relying on the prayers of our village to sustain us!  And the roller coaster continues, but here are some recent highlights that can been seen while on this crazy, but amazing roller coaster...

Grace is babbling more, but her vocabulary has exploded over the past couple weeks as she has put consonants and vowels together (some of our favorites include ma ma and da da... :-).  She can also wave, give high fives (this isn't a new trick, but it's still worth mentioning), and sign "all done." Since eating isn't her favorite activity (I don't know how that can be the case because the Lord knows it's my favorite activity) she likes to try to tell us that she's all done after just a few bites, but after we count down her bites when she's almost done (2 more bites, now 1 more bite), she is quick to remind us that she is "all done."  She puts her arms out when she wants to be picked up and puts her arms out for hugs (another one of my favorites :-).  She can sit up on her own and she's getting closer to crawling (she can get to where she wants to go, but hasn't quite figured out how to put all of the pieces to crawling together, yet).  These milestones may not sound super impressive for an almost 12 month old, but for a 12 month old with Up's and having been through 2 major open heart surgeries, we feel like they are certainly worth celebrating!!!  Praise the Lord for such a sweet view from all the loops and big drops of our divinely designed roller coaster....  Hey!  Maybe we should name our roller coaster...

We have our next cardiology appointment on Tuesday of this week.  Will you please pray that everything looks good/stable?  I have to admit, I always go into these appointments with a little fear that something will concern her Dr's enough to say that we need to be admitted to the hospital here or go to Boston sooner for surgery.

Praying that you and your family are having a great weekend and enjoying the view from your roller coaster (we all have one, right?).

Abigail is such an amazing big sister for so many reasons, but one of the sweetest is the way that she sings to Grace.  Here she is singing Grace, her favorite song "Amazing Grace."

Andrew is always kissing on his baby sister...

Here is Gracie and her best friend/Daddy today at the movies.  We went to see Planes.  Super cute movie by the way...

Surgeon update...

.... So, we are waiting (with anticipation) to hear from the scheduling department in Boston as to when our pre-op (MRI, heart catheter, blood work, vitals, meeting with our cardiologist and surgeon, etc) and surgery date will be; it should be early October.  In the mean time, we are so grateful for how God has chosen to reveal who should perform Grace's next open heart surgery.  Our Boston Cardiologist, Dr. Marx, called me a few weeks ago in the evening to discuss Grace's upcoming surgery date and when I asked him about potentially switching surgeons, I was floored by his response.  He said that he would be willing to talk to Dr. Del Nido for me to see what his thoughts were.  At 6:45 the next morning, he called me back and said that he had been thinking more about it and that it would probably be more compelling coming directly from me, so he suggested that I e-mail Dr. Del Nido directly.  Dr. Marx went on to bless us with his unwavering support and encouragement.  He said that if he had even the vaguest sense that Dr. Del Nido was a better fit for Grace, he would have suggested a switch without me ever having to bring it up.  The reason he was willing to support us reaching out to Dr. Del Nido is because he wanted to make sure that we felt heard and had peace about the whole situation. He went on to encourage me and ask about how David was doing and commented on the great impression that David made on him while he was in the hospital with Grace (when I had to go home).  So... seconds after hanging up the phone with Dr. Marx, I was sending off the e-mail to Dr. Del Nido.  His response came later that day and he very graciously said that he would be at a huge disadvantage if he stepped into Grace's case at this point, since Dr. Pigula has seen Grace's anatomy first hand (when he had her chest open for the last surgery) and knows her case.  He also said that he has full confidence in Dr. Pigula, but would be happy to review Grace's case with him and Dr. Marx.  David and I have complete peace that Dr. Pigula is who the Lord has hand selected to operate on Grace in October.  There really aren't words to express the magnitude of that peace that can only come from God except to say that it must be the peace that He talks about in Philippians 4:6-7.

^{6 "}do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. ⁷ And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus."

So often, when you have a sick kiddo (like Grace) you can feel like you are carrying the weight of the world on your shoulders (how to provide the best care for your child, advocate well for them, protect them, etc) and that is a burden that we weren't created to bear in our own strength.  It can be mentally, physically, and spiritually debilitating when you feel responsible for all aspects of your sick kiddos (and your healthy kiddos too for that matter:-) well being, which makes me so grateful for the truth found in Mathew 11:28-30.

^{28 "}Come to me, all who labor and are heavy laden, and I will give you rest. ²⁹ Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. ³⁰ For my yoke is easy, and my burden is light.”

Here's the deal, our praying village...  please remind me of these powerful truths when I'm in the hospital and broken because the roller coaster feels like too much to bear.  Please also continue to pray us through each step of this journey because we are not above reproach when it comes to feelings of fear and anxiety and we all know that's where the enemy wants us, but we also know that prayer and truth are the best and most powerful tool that we have!

Last weekend we took a mini vacation to La Toretta on Lake Conroe (only about an hour and a half away).  Grace stayed with us the first night and then went to my in-laws the second day and night so that we could spend some quality time with Abigail and Andrew.  We had a great time!  Some of the highlights include, going on this giant slide about a thousand times, the lazy river, and golfing (it was the kids first time doing real golf).

We have had two family outings to the movies with Grace so far and she is a great movie goer so far...

On a not so good note...  we came home to a house that was 85 degrees :-/.  Long story short, our air conditioner needed to be replaced.  Since it was 12 years old and out dated, we had to replace the inside AND outside unit...  OUCH!!!  Boy, that hurts when you are gearing up for an expensive vacation (trip) to Boston Children's Hospital for 2-3 months and something that big and expensive goes out.  I'm trying to remind myself that our money is really God's money, so if He wants to spend His money on a new air conditioner then He can do that :-).

Just for fun, here are a couple sweet and silly pictures of our sweet Gracie Doo...

We love and appreciate each of you!