Houston we have a heartbeat!

I apologize for not updating sooner, all they told us before was that "everything was going well."  We just got a great update though, Grace is off of bypass and her heart is beating on it's own!  Praise the Lord!!!  They are now just closing up her chest, measuring pressures, oxygenation, etc.  The surgeon is suppose to come talk with us in the next 30-45 min, then they will take Grace to the CICU, get her situated, and then, Lord willing, we will get to see our little honey!  Will you please pray for our hearts when we do get to finally see Gracie?  It is really hard to see your little angel in that condition, you know?  Thank you!

A couple of people have asked about what our shirts say, so here is a picture of it.  We had them made for the Buddy Walk in 2012 (it's the Down Syndrome walk).  "Gracie Doo" is our families nickname for Grace (in addition to Kitty :-).

Surgery day is here!

Gooooooo, Team Gracie Doo!!!  Sorry for the delayed post, I keep getting side tracked talking to people :-)

They took Grace back from pre-op at about 8:30 am.  At our first update, they had made the incision around 10:00 and we just got another update that she is now on bypass and they are beginning the repair.

God reminded me last night, as I was feeling a little anxious, that the reason for the tension was because my fists were clenched...  I was holding on so tightly to what I hoped for (a full bi-vent repair right now, the fear that they may not be able to do it in the future if the left ventricle and valve don't grow, etc) and the moment that I mentally unclenched my fists and opened my hands to God's will (even if it hurts :-) I felt an overwhelming sense of peace.  The kind of peace that can only come from our almighty, holy, gracious, sovereign, loving, merciful, and all around AWESOME Heavenly Father!

Next update should come in about an hour to an hour and a half...

Keep the prayers coming, our sweet prayer warriors!  All of your prayers, encouraging words and support have blessed our socks off!

Surgery is a go for tomorrow...

Grace did a great job during her MRI and echo!  They didn't need to do the heart catheterization, which is certainly a praise!  After reviewing the images, the Surgeon and Cardiologist have decided that the safest approach will be to do a staged approach to a biventricular repair, which means they will close the large holes in her heart, but leave a small hole (like a "pop off valve") in an effort to grow the left ventricle and left mitral valve.  Right now the mitral valve is only 10 mm and they need it to be at least 15 mm for it to function on it's own.  They also need to replace the pulmonary band which has caused a little damage (this happens because as Grace grows the band doesn't, so it can sometimes cause damage).  We also learned that she only has one papillary muscle when most people have two, which makes it even tougher for that left side to function on it's own. The hope is that the left structures (especially the valve) will grow over the next 6 months to a year, allowing them to be able to do a complete bi-ventricular repair at that time.  This surgery is newer and very cutting edge, so we are grateful it is even an option and will continue to hope and pray that her next surgery will be a bi-ventricular one.

Surgery is scheduled for 7:00 am tomorrow morning and will last about 6 hours.  Assuming that all goes well during surgery and post-operatively, her surgeon thinks she should be able to go home in about 10 days (much shorter than we expected because if they went ahead with a full bi-ventricular repair this time it would have been closer to 6 weeks).

Praises...
1)  We are able to have confidence that God is good all the time, even when it's scary or it hurts!  He promises to never leave or forsake us and He has never broken that promise... after all God has proven throughout time to be a promise keeper :-).
2)  Grace didn't need a heart catheter today, so she gets to stay in the hotel with us tonight, instead of the hospital.
3)  We were able to move hotels, especially since they have a big storm warning here that starts tomorrow and goes through Friday (I leave to go home on Saturday) and we get to give Grace her surgical scrub/bath in a private bathroom.
4)  The red spot on Grace's surgical site is pretty much gone.
5)  The heart of everyone we have met so far in Boston.  The Dr's and nurses have all been such a pleasure to work with and it truly makes my heart smile to see how sweet they are to Grace!!!
6)  Abigail and Andrew seem to be doing good as they count down the days until Mommy comes home!
7)  AND...  I got a new tooth brush :-)

Prayer requests..
1) Please pray for wisdom and skillful hands for her surgeon and everyone else involved in her care during surgery.
2)  The surgeon did say there is a small chance they could get in there and see that the valve looks better and bigger than what they could see on the images they got today (it's hard to see when you are talking about a difference of millimeters), so if they get in there and see that the valve is at least 15 mm, then they will proceed with a full bi-vent repair.  Please pray that the Lord's will will be clear.
3) For the type of peace and comfort that only God can provide as our little honey is in surgery and as she recovers.

Thank you prayer warriors!!!  I plan to update the blog tomorrow throughout her surgery, as we get updates from the nurse (it should be about every hour and a half).  (((hugs)))

Boston adventure...

David and I are treating our trip to Boston as an adventure because there have been so many unknowns that we have already had to work through and yet one thing remains...  God is good!  

We arrived in Boston yesterday evening and Grace was a little angel on the airplane.  

"Check me out, just snoozing away with Daddy!"

We stayed at a Ronald McDonald like house last night, which used to be an old dorm room for nursing students, where you walk into a room that barely has enough room for a queen bed in it and you share a single bathroom and shower with everyone else on the floor.  We are so grateful for the amazing service that this house provides, but it didn't take us long to realize that walking 4 blocks to the hospital with Grace in 30 degree weather (the shuttle that we thought we could take wasn't available); needing to give her a pre-surgery bath (bath with surgical scrub, etc) in this tiny community bathroom wouldn't be ideal; having to walk back and forth to the room by myself would be super scary (especially because they weren't kidding when they say that only one person can stay in the ICU with Grace because there is hardly room for one person there); and lastly, being 4 blocks away when your baby is in critical condition doesn't seem far, but it is.  With all of that being said, thanks to the generosity of so many, we were able to get a hotel room right next to the hospital, so we just checked into our new room and couldn't be more grateful!  I was praying about whether we should switch rooms/hotels or not because I didn't want to have to spend more money, but also knew that it would make so much more sense to be closer to the hospital...  and just then, my toothbrush fell into the toilet.  For some reason, from that moment on I was sure that moving rooms made sense :-).  

"I love our new room and how my Daddy can always make me laugh, even after a long day at the hospital!"

God's sweet hug yesterday came as we were boarding our airplane.  We had the window and center seat and the gentleman that we would be sitting next too was already in his seat as we were boarding, so inside I was bummed that we would for sure have a neighbor and not an open seat.  The second he got up to let us in and offered to put our GIANT diaper bag in the overhead for us and commented on how cute Grace was, I knew that if we had to have a seat buddy he would be a good one, but never did I know that he would be God's hug for me that day.  I can't remember how we began talking about Grace and why we were going to Boston, but I quickly realized that he must be in the medical field because of the questions that he was asking.  As I told him about Grace's diagnosis and why we were traveling to Boston, he said that Grace looked so good for a "heart baby" and he had full confidence that she would do great!  Besides just being a really nice guy, what would qualify him to say that.... well, he just so happens to be a Cardiologist at Mass General!  He must have made the comment about what a good baby Grace is, how great she looks, and how confident he was that she would do great in her surgery about 5+ times and he was so generous as to talk me through some of the concerns that had been weighing on me (risk of flying, fear of germs, potential complications of the surgery, why some Dr's respond the way they do about second opinions, etc).  Long story short (well not that short because I don't know how to tell a short story- sorry!), God gave me a big hug by forcing us to have a flying buddy that knew just what this Momma needed to hear as we begin this journey!

We were at the hospital for our pre-op appointment at 7:30 this morning and didn't finish until about 1:00 pm, but there was hardly a minute of down time.  They run that operation like a well oiled machine.  We did X-ray, EKG, vitals, blood draw, hospital tour, meeting with our Cardiologist, Cardiology PA, Surgeon, surgery fellow, and Anesthesiologist with out a whole lot of wait time in between.  We loved everyone that we met with today and couldn't be more grateful for the heart and gifting that God has given them (not only in Medicine, but in interacting with patients and their families :-).  As much as we enjoyed meeting everyone today, one thing that that was hard is being reminded of the reality that lies before us and that is the critical condition that Gracie will be in shortly and the seriousness of her surgery. It's not like we didn't know that (especially because we have already been through one open heart surgery), but it's amazing how quickly you forget how traumatic it was; also, the reality that we are not guaranteed a bi-ventricular repair until they see the additional images tomorrow.  This is where you come in sweet friends and family, will you please pray that the MRI and echo tomorrow only confirm that Grace is the perfect candidate for a bi-ventricular repair and that they don't find anything that would make them question that?  We also learned that in addition to an MRI and echo, there is a high likelihood that Grace will need another heart catheter tomorrow to potentially do a balloon procedure on her aorta (which was corrected during her first surgery).  If she does need the heart catheter tomorrow, surgery will be moved back to Thursday or Friday (that makes me sad because I'm going home to be with A and A on Saturday, so I'll have to leave while Grace is still very critical) in an effort to give her body time to rest after the catheter and before surgery.  Also, if she has the catheter tomorrow, she will stay in the hospital tomorrow night, instead of in the hotel room with us, so it's one less night with her before surgery.  Lastly, this morning Grace woke up and had a small red spot on her surgical site (where they cut her open the first time) which she has never had before, so I was worried that it may be an infection which would only delay surgery, etc, so I showed everyone that we met with today and they all felt like it was more of just an irritation not an infection.  Will you please pray that it's not an infection and that she does't get any other illness before or after surgery?  By the way, we made a CVS run yesterday where I bought a new can of Lysol for our room and I can not tell you the joy that it brought me!!!  

"Hope this picture makes you smile because for some reason it makes Mommy and Daddy laugh.  This was me doing tummy time as I waited to see one of the many Dr's today!"

Well, I guess that's it for now...  Tomorrow is another big day, so please keep the prayers coming!  THANK YOU!!!  We love and appreciate you more than you know!

"two more sleeps" until we leave!

I can't believe that we leave for Boston in "two sleeps" (as Abigail and Andrew would say)!  I just wanted to introduce you to the newest member of our family...  

Her name is "Lovey!"  Abigail and Andrew picked out this puppy dog at Build a Bear because she had hearts all over her (representing Grace's upcoming heart surgery).  They put a recorded message in two of her paws.  Abigail said "I love you Gracie!  You are a tough little cookie.  I'm praying for you."  Andrew said "I love you Gracie!  I 'm praying for you.  I can't wait until you come home so that I can snuggle you."  We promised them that we would take "Lovey" with us to Boston and play there message to her often so that she will be comforted hearing her Big Brother and Sister's voice.  I must say it was all (BOTH) David and I could do, not to fall out in tears as we heard them record their personal message to their Little Sister :-).  Gracie loves "Lovey"!!!!

We are so excited to go to Boston and (Lord willing) get Gracie's heart fixed (or closer to being fixed)! This is crunch time family and friends...  we need your prayers more now than ever, so we humbly ask that you continue to cover us in prayer as we begin our journey Sunday morning (our flight leaves at 11:00 am Central Time)...  Thank you, thank you, thank you! I will do my best to post updates at least once a day while we are in Boston, since you are all a special part of "Team Gracie Doo" I want to make sure that y'all know what is going on!

One more specific prayer request...  Will you please pray that we would have soft and open hearts toward other families, Dr's, nurses, etc in Boston (not inward focused on our own situation), so that we would be ready and willing to love on and encourage them.

For such a time as this...

Lord willing, a week from tomorrow we leave for Boston!  We are doing our best to prepare for a journey that is full of unknowns, but God has been SO generous to us by providing reminders all along the way that He's got this...  There have been cries and conversations that only God has heard and He has met those cries with comfort and reassurance in ways I would have never imagined.  He has called and equipped people to come alongside of us and provide for some of our biggest needs.  The most amazing part is that the people He has used to bless us are people that we have never even met before or hardly know!  A super special friend of ours has really stood in the gap for us, encouraging us all along our journey and sharing our story with anyone that would listen :-).  Some of her family, friends, and church family felt led to help us out in various ways, making our trip to Boston more and more of a reality and less stressful.  We find ourselves on our knees thanking the Lord for how He meets needs and we pray blessings over those people that have so generously opened their hearts to our sweet Grace, whether by praying for her and/or us or meeting our very tangible needs.

I hope this smile is a glimps of our gratitude!  THANK YOU!!!

I also stand in awe when I think through how God has knit our lives together in preparation for "such a time as this."  I remember sitting on the balcony of a beach house in Galveston with Suzan Parle in October or November of 2011 as we were reflecting on what God was up to in our lives.  I remember saying that I was confident that God had David and I in the roles we were in (myself working full time and David in Seminary and being home with the kids) for a reason, He just hasn't  revealed the specific reason yet.  I would have NEVER dreamed that just a month and a half later we would be pregnant with Grace (we weren't even considering a third child at that time).  Now I know!  God was preparing us all that time for such a time as this!  The fact that David has had the time and energy to lead our family through this journey (as I've mentioned before, in God's strength, he is the backbone of our family) and is able to stay in Boston with Grace as long as needed (of course I pray that it will be shorter, not longer :-) is a blessing that can't be described in words. I have always loved my job, but I have never been more grateful for the medical benefits that my company generously provides and the incredible support I have received from my manager, counterparts, and upper management.  There are so many other details that I know are no coincidence, but instead are a divinely orchestrated plan that has been devised for such a time as this.

Once we arrive in Boston, we are suppose to have a very full day of pre-op "stuff" to take place on Monday, March 4th, a sedated MRI and 3D echo on Tuesday and surgery on March 6th.  We sure could use your prayers that the additional images provided by the MRI and 3D echo only confirm that she is a candidate for the biventricular repair and that surgery is a huge success with no complications. You know the saying that it takes a village to raise a child?  That saying has never been more true than right now in our lives, so thank you all for being our village!

"Did someone say surgery?!?!" - this is one of our favorite new faces that Grace makes...  We call it her Grandma without dentures face :-)

Our family did the Campbell Elementary Bunny Hop Fun Run this morning (it is Abigail's elementary school's big fundraiser) and we ran the 1 mile portion of the race.  David and Abigail ran the whole mile pretty hard, without taking any breaks, while Andrew and I... well, we ran about half of it with Andrew on my back or with Andrew saying his legs were tired.  However, the last quarter of a mile I said to Andrew that I needed him to push it for Gracie because she is one tough cookie and has been through way more than just having tired legs.  At that moment, Andrew got a determined look on his face (eyebrows down, starring intently ahead) and he took off practically sprinting the remainder of the race while saying "I'm running for Gracie...  I'm doing it for Gracie!" I was surprised that I didn't lose it crying at that moment, but I sure did have a huge lump in my throat watching him run hard for his baby sissy.  We were so proud of them both!

Here is a little extra sibling love...

Who would have known...

This post has been on my heart for the past week or so and today seemed like the perfect day to share it with you for a reason I will explain in a minute...

I grew up dancing since the age of 3 years old until after college.  My Mom and I (I'm an only child) spent most days after school at Dellos Dance Studio where I not only grew as a dancer, but also as a dance teacher, and it didn't take long to develop friendships that I never would have dreamed would have such a profound impact upon my life.  One special friendship that has always held a special place in my heart (but never more special than how I feel about him right now) is this amazing little boy that I met when I was of elementary school age.  He and his mom would spend hours at the dance studio, while his older brother took dance class.  This little boy captured my heart with his infectious smile, joyful spirit, and unconditional love that he so freely gave.  This little boys name was/is Keith and he just so happens to have Down Syndrome.  I can so vividly remember the joy I felt in my heart when ever I would see Keith.  One day in particular stands out in my mind, the studio was selling dance clothes and Keith and I were sitting inside of the clothing rack where the clothes were hanging.  We sat in there and laughed for quite some time and I will never forget the love I felt for that little guy at that moment.  He was only 5 years younger than me, but I loved him like a little brother.  After spending time with Keith that day I remember saying to my mom in the car on the way home from the dance studio that "I want a little boy like Keith some day."  I don't even think that I knew what Downs Syndrome was at that age, I just knew that there was something so special about Keith and it didn't need a name.  As life would have it, I got more and more involved with dance at school and went to Dellos less and less, so I eventually lost contact with Keith.  In the years that would pass, I apparently became more and more worldly (caring about my own comfort and allowing the world to dictate what "good" is) because 20+ years later God blessed me with a little girl "just like Keith" and I was scared to death, not realizing (at the time) that He had spent decades preparing me for such a time as this...  To be the mother of Grace Astrid Ross, who just so happens to have "Up's."  It is with great humility, joy, and gratitude that I can say that I'm SO honored to be her mom.  Isn't God good, how He prepares us for His perfect plan in ways that we could never imagine?  The reason I felt that today was the perfect day to share this post is because it just so happens to be Keith's 29th birthday!  Oh, what I would give to wrap my arms around his neck right now and thank him for all that he taught me and probably didn't even know it!  I pray that Grace will impact someone's life like Keith did mine.  HAPPY BIRTHDAY KEITH!

Check out our little honey sitting up in her bumbo, playing with one of her best friends (her favorite toy).  Grace was on sternal precaution (she couldn't lay on her tummy, get picked up under her arms, etc) for 6-8 weeks after her first surgery, therefore, she wasn't able to do tummy time until she was 10 weeks old.  Since she got a late start on practicing strengthening her neck muscles it has been a much celebrated milestone as she has started really holding her head up well!  Way to go Little Doo!!! BTW-  this little stinker has the sweetest, most precious, and infectious smiles when you are talking to her and the second you pull out a camera she turns it right off!  This is why there aren't many pictures of her smiling and while I have a lot of videos with her smiles, I still can't figure out how to upload them without investing a great deal of time... Sorry!

Just because I can't leave out Abigail and Andrew's sweetness, here is a picture that our friend, Dionne, took of them a few years ago...