We got to kiss our baby!

We were pleasantly surprised that Gracie didn't look nearly as scary as she did after her first surgery (I think the gown and the fact that she was intubated through the nose instead of the mouth helped a lot too :-) , but still not easy to see your little one in that condition.  It didn't take long to realize just how blessed we are with such incredible nurses here in Boston!  They are keeping her completely sedated overnight and into tomorrow morning, so we plan to try and get some rest tonight at the hotel and be there for rounds first thing in the morning (where the cardiac team reviews each patient's diagnosis, condition, treatment plan, etc).  I have debated about whether to post a picture of Grace post-operatively, in case anyone is squeamish, however I know that there are some people that would really like to see a picture (like my sweet friend Steph who is far from squeamish :-).  So, I'm going to post a picture, but if you don't want to see a picture then please don't scroll down...

I just have to remind y'all again how much your prayers, comments, texts, etc mean to us.  They truly fuel us to push on when we feel weak! (((BIG HUGS)))

One step closer to seeing our little honey!

The surgeon finally came to talk to us (thank you for your prayers and scripture reminders)!!!  Grace is being moved to the CICU now and, Lord willing, we will be able to see her in about an hour.  The surgery went well and the Dr is pleased with how it went.  He said they have been messing with the Pulmonary band for the past hour and that's what took so long.  The Pulmonary band is basically a string like thing around the Pulmonary Artery (to restrict blood flow) and it is tough for them to judge how tight to make it.  It needs to be loose enough so that she can grow into it some, but not too tight (it really is an art).  Long story short, our little Gracie Doo is stable and for that we are beyond grateful.  They plan to keep her fully sedated overnight to give her body a chance to heal and they will continue to monitor her closely.  We have certainly felt ALL of your prayers!  THANK YOU!!! Please continue to pray for a quick and seamless recovery and for the left ventricle and mitral valve to GROW, GROW, and GROW some more!

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.