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!

Count down...

Oh dear!  I can't believe it's been over a month since I have posted on the blog...  I seriously don't know where this past month has gone.  As bad as I have been at updating the blog, I've been equally as bad at taking pictures, so I hope that our most recent family pictures will do :-)...  Here are a couple highlights of the past month and an update on what is to come in just "TWO SLEEPS"...

Let's begin with Andrew...  

This boy has blessed us this past month with his ongoing antics, from the way that he (in a very serious manner) teaches us about what the fireman or veterinarian that visited his school taught him.  In an effort to make sure that we were retaining the information, he proceeded to give us a verbal quiz (Gracie was exempt from the quiz, but the rest of us where called on individually).  Another sweet (and heartbreaking) Andrew moment was when I had two long work days in a row (I had to leave right after they got up in the morning and got home shortly before they had to go to bed) and when I walked in the door, he ran up to me with tears in his eyes and said "Mama, I've been missin' you!"  Cue the tears...  He melts my heart!

Abigail's turn...

Since my last post, Abby started soccer.  She is doing a great job on a team with girls that are twice her size (or more).  We love watching her play soccer because she tries so hard and her love for the game is  so evident. Isn't it neat when you get to see your kids get passionate about something?  Abby's other passion that is further evidence of how God has already used Grace (having a sister with special needs) to mold her into the person that He created her to be is seeing and hearing about how much Abby LOVES the "kids that take longer to learn" at her school (that's what she calls the special needs kids at her school).  She makes cards for them, looks for opportunities to encourage them, finds such joy in watching them learn new skills, wants to be partnered with them whenever possible (during PE, Music, etc), and most of all she loves that she has been asked to be their special helper whenever they need something.  More tears and melting of this momma's heart :-).

We made some other great memories this month that include (but are not limited to): a great visit with Nana Lu Lu (we went to an Angel's vs Astros game), an amazing Steven Curtis Chapman concert with some dear friends, our church praying over us, and much more...

Now that you are caught up on what we've been up to, I would like to humbly ask for your immediate prayers.  In two sleeps we will be heading to Boston for Grace's third (and biggest heart surgery).  We leave on Sunday, we have a full day of pre-op stuff on Monday, heart catheter on Tuesday, and then surgery on Thursday (Lord willing).  I will be there for 9 days (I need to get home to be here for Abby and Andrew and to work) while David stays with Grace for the 2-3 months that she will be in the hospital.  I plan to take the kids to Boston at least once to see Grace and David and then I will go back and forth as time and Abby and Andrew's needs permit.  I've been surprised that the anticipation of this trip to Boston is very different than the last one in that it has been very emotional for the kids (especially Abby) and David and I.  I think that the heightened emotion is due to the fact that we will be split up as a family for much longer than last time, the risk associated with this surgery is much higher (if this surgery fails, we don't have many good options left), and now that Grace has been a part of our lives for over a year we are all head over heals in love, or should I say obsessed with her, and it will be all the more difficult to hand what appears on the outside to be a healthy child over for surgery.  Aside from the uncertainty of the future, the past few weeks leading up to our departure have been full of what feels like attacks from the enemy.  For some reason, I pictured the weeks leading up to Boston being full of "kumbya" moments (lots of family time where we pour into our kids, feed our marriage, etc), but instead we have been hit with pink eye, a terrible bout of allergies for me (an unruly cough that nothing could touch except a steroid pack), the busiest I have probably ever been at work, and lots and lots of loose ends that need to be tied up before we leave... all while trying to help the kids process their feeling associated with this journey.  While it crushes us to see our kiddos broken over our trip to Boston, I'm grateful that they share their hearts with us and it provides us all with some great teachable moments on how to lean into God and trust Him during the toughest of times.  It is also a chance to get to reflect on how God has used this journey over the past year with Grace to refine us, and draw us closer to Himself and each other.

Here is how you can specifically be praying for us...

1)  Sunday- when we say goodbye to the kids that it's not to painful on any of us, our trip to Boston is seamless and that we all stay healthy (especially Grace!) and that Abby and Andrew would have a great time with my in-laws and hardly have time to miss us.

2)  A successful surgery and recovery that goes better than anyone could have ever imagined and that God would get all of the glory.

3)  Peace, strength and joy for our family as we are split up for what feels like forever.  On a side note, as I ponder being split up for months, I can't help but think about military families that are split up for so much longer and face life or death situations daily.  Will you please join me in praying for the amazing men and women that serve our country and their families?

4)  That our hearts and minds wouldn't be so focused on our own circumstances that we miss opportunities all around us to encourage other families in the hospital and share with them the hope and peace that can be found in Jesus Christ.

It is times like this where we feel your prayers most tangibly than ever before, so thank you for lifting us up in prayer!  I will be updating the blog as often as possible while in Boston...

"Thank you for your prayers!  You are the best village a girl could ask for!"

A blessed week...

Wow!  What a busy and blessed week!  Here we go with an update...

Abigail started 1st grade on Monday...  For those of you not on Facebook, I have to tell you about Abigail's outfit that she wore on her first day of school.  Although Abigail is not much of a "girly girl" (she's been known to wrestle boys much bigger than her), she still LOVES long dresses/skirts, so we bought her a "knee length" uniform skirt; however, on her it's more of an "ankle length" skirt (which she thinks is awesome).  She was married to the idea of wearing this skirt on her first day of school, so we let her wear it despite the fact that she looked like she just walked off of the set of "Little House on the Prairie." This summer I have been reminded of the Divinely woven relationship that these two have...  They truly adore each other and see themselves as a team which has and will (Lord willing) continue to serve them well during this chaotic and uncertain time approaching in our lives.  They are learning that while our circumstances here on earth are uncertain, we will always have the certainty and stability of an all loving, unwavering, all powerful, and always present Heavenly Father!  

Abigail and Ju Ju's classes are right next door to each other which is another sweet treat for many reasons, but one of which is that they can walk into school together, etc (especially because Abigail is directionally challenged like her Mommy, so she has already gotten lost on the way back to her class after going to the bathroom).

The Three Musketeers outside of Abigail's classroom on her first day.  There are many times when I ask David if we should ask my parents to watch Grace, so that we can focus on the big kids (like taking them to their first day of school, etc).  I already know the answer that I will get from him, but I'm just always concerned about not being as present as possible for the big kids when they need us; however, David will almost never leave Grace out of any family outing (especially ones that have meaning behind them, like the first day of school) and the reason is twofold...  She's a special part of the family and he doesn't mind toting her around (anywhere and everywhere, even when I am unsure) and the other reason is one that neither of us have been able to finish the sentence of... One of us will say "she needs to come because what if..."  the rest of the sentence that we can't seem to vocalize (but don't really need to because we both know what comes next :-) is "...this is her last time to take the kids to their first day of a new school year, go on that family vacation, watch the kids at gymnastics, etc."  We are well aware that tomorrow isn't promised and there is always a chance that we could have to come home from Boston without our Gracie Doo, which makes for a great reason to practice finding the joy and blessings in every circumstance.  While this journey that we are on is not easy, it is good because it challenges us to see life through God's eyes, not our own earthly eyes.  

Abigail and G-dog outside of her classroom.  I just had to throw this one in because this is a depiction of one of Abigail's favorite things to do.  She loves to hold Grace (and anything else that we will allow her to do with Grace :-) and Grace is giving a great Downsy-Doo look (which we love :-)!

This was just minutes after getting home from dropping Abigail off on her first day of school and the question "is it almost time for Abby to get home" started promptly after the picture was taken...  Poor Andrew was missing Sissy all week (glad he starts school this coming week)!  I'm sure Gracie missed her a bunch too, she just didn't talk about it as much :-).

Grace turned ONE on Tuesday...  

David turned 34 on Friday and Andrew got to meet his teacher on Friday too (I totally forgot to take a picture of Andrew with his new teacher :-(, but I will make up for it on his first day of school, as long as Grace doesn't distract me :-).  This was Grace and David's birthday dinner at BJ's!

PARTY TIME!  Saturday we celebrated Grace's birthday with a little pool party!  Thank you KK (my step mom) for hosting it and helping out with all of the details!

Love these two!  Our poor little honey scratched her nose the day before her party, but she's still a cutie, scratch and all!

This is one of her Grace's new tricks...  we sing "Humpty Dumpty sat on a wall..." and when we say "Humpty Dumpty had a great fall"  she puts her arms out and scoots off the edge of the pool!

The big kids and their Papa (KK isn't pictured because she was running around preparing food, etc)!

Grace's first bite of cake...  I think that her eyes say it all :-)

Their were plenty of tables, but the kids loved sitting on the blanket to enjoy their food.

Sissys giving each other a high five!

The kids Grandparents and pseudo-Grandparents (Mrs. Kathy and Mr. Burt are Ju Ju and Glo Glo's Grandparents, but we love them like ours), minus Mary (who is behind the camera) and Lu Lu (who is in California and coming out to visit in a couple of weeks where we will celebrate all over again).

THE CAKE!  I had a picture of Grace and David put on the birthday cake because we were celebrating both of their birthday's, but also because they are homies!  David gets Grace in a way that nobody else does.  He doesn't worry about things like I do ("is she looking blue, has her food intake decreased, does she feel hot to you, is she fussy because she's getting sick... " and the list goes on :-) and he joyfully gets up in the middle of the night when she wants to party for two hours for no apparent reason. I know... he's amazing, right!  Oh!  And the hearts are for Grace's special heart (since having our Gracie Doo, I've been obsessed with hearts :-).

That's it for now...  Thank you Village for your love and support!  Please keep the prayers coming!

Grace is saying "peace out!"

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!