Sunday, March 31, 2013


Today was an emotionally rough day for a couple of reasons (one of them being Grace's lack of eating), but I was constantly reminded of a life changing truth that brought me joy and hope despite many moments of tear filled eyes throughout the day...  We serve a God that has conquered death!  What does it mean that God didn't come just to live among His people to be a good example and to die a martyrs death?  Instead, He left the glory and comforts of heaven, wrapping Himself in human skin to come to this broken world, live a sinless life, die a sinners death (in our place), and RISE up from the dead .  If God would sacrifice His only Son for us, what won't He do for us?  If He can conquer death, what can't He do! The answer to those rhetorical questions are just the hope that I need to put one foot in front of the other, trusting in God's perfect provision (even when it hurts :-).  He has used many of you to remind me of that truth today...  Your comments and messages blessed me more than I could express (please forgive me for not always having time to respond to them and please don't doubt for a second whether they matter or not because they matter more to me than you could ever imagine!).  Some of you stopped in your tracks to pray over me when I simply mentioned my broken heart over Grace's eating, some of you talked me through different strategies and reminded me that we aren't alone on this journey, and most importantly you have covered us in prayer.   Please keep the prayers coming :-)!!!

Update on Grace's eating...  Her first 4 feedings (if you would even call them that) consisted of 1.5 oz, which was one reason for my tears, but on her 5th feeding, I mixed her formula with a good bit of rice cereal and spoon fed it to her.  She actually opened her mouth for it and ate enough to make my heart leap with joy!  As always, that could have been a one hit wonder, but we will praise the Lord never the less!

Here are some pics from our Easter festivities...

We caught the Easter bunny hiding the resurrection eggs (if you have never heard of them, please check them out!), which is our new favorite family tradition.  It was amazing to hear the kids tell us the story of Jesus' death, burial, and RESURRECTION!

Then, Gracie Bunny gave the kids a clue as to where to find their Easter baskets...  That's when Abby said "why do we get Easter baskets?"  I thought that was so sweet because it reminded me that Easter isn't about chocolate bunnies, candy, and stuff (or maybe we have just been successful at setting the bar low enough when it comes to giving them big gifts that they don't really know to expect much :-).

Then, we had a great time swimming with some sweet friends and family!  Praise the Lord we got a lot of swimming in before a big rain storm!

Then, we gave Grace a big bowl of formula and rice cereal.  I wish I had a picture of that activity...  to give you a visual, Abby said "that is so cool, it looks like fireworks of food all over Grace's face!"  Let's just say that Grace was enjoying trying to talk to me while eating, so we were both covered in food.  As long as more ended up in her tummy than on us, I was one happy and grateful Momma!

Praying that you are experiencing the hope found in Jesus this Easter Sunday!  (((BIG HUGS)))

Saturday, March 30, 2013

Long time no see...

Long time no see...  We are beyond grateful to be under one roof as a family and are trying to be purposeful about celebrating that blessing despite all of the chaos.  I will be honest, it has been HARD since Gracie has come home because it is like having a newborn all over again, in that she wakes up multiple times throughout the night (she use to be a world class sleeper).  It is also a huge challenge to get her to eat "enough."  We find ourselves investing so much time, emotion, and energy into pushing her to eat more because we know that her growth and health depends upon it.  Each day my adversity to her getting a temporary feeding tube weakens just a bit because worrying about her eating is exhausting.  I still pray and hope that she won't need one of course because it is just one more thing to remind us that she isn't healthy, but I trust that if God's in the process of preparing my heart for that, it will certainly be alright.  For a while, Grace was throwing up most of an entire feeding because she would gag on her Lasik's (one of her medications that apparently tastes terrible and is a large quantity), so that was heart breaking.  By God's grace we made some adjustments (give her yucky medicine on an empty tummy and mix it with apple juice) and it has worked in keeping the medicine down.  Long story short, I haven't posted on the blog lately because David and I are EXHAUSTED!!!  While it has been a tough week and a half, this truth reminds me of where my strength comes from...

Will you please cover us in prayer right now (we need it :-)?  Please pray that we would get some rest and that Grace would EAT (and stay healthy of course)!  Thank you village!  We love and appreciate you more than you know!

Here are a few pictures from the past week...




Grace saying "Who me?!?!"

Thursday, March 21, 2013

"Bless the Lord o my soul..."

Happy Down Syndrome Day!!!  We have had a crazy and busy past 2 days...  Grace was discharged from the hospital yesterday, so David and Grace stayed in a hotel last night.  Grace decided to have over an hour long fuss bomb last night that seriously had David and I questioning if we could even bring her home.  David was ready to call the hospital to see what he should do because she seemed inconsolable (we knew if we called that they would probably want to see her, so that would mean that they wouldn't come home today).  We agreed to both pray about it and ask God for clarity and wisdom as to what we should do and God answered our prayers in the sweetest and most timely way...  she just randomly knocked out!  Our guess is that she was just overly tired from only taking 15 minute cat naps for much of the day and just needed to get home (more on that in a minute).  David and Grace woke up this morning to go to the airport and Grace was back to her "hospital normal self, " so they made the 4 hour flight with only about an hour and a half of her kitty fusses.  We can only praise the Lord that she didn't have an all out fuss bomb, but instead the kind of fuss that sounds like an irritated kitty cat meowing (which isn't really loud enough for other people to hear, just enough to keep her daddy busy bouncing her for 90 minutes straight :-).  

Meanwhile, I hadn't told the kids that Grace had even been discharged because as we all know, anything can happen from one moment to the next.  I told Andrew that we were going to do something fun today and he said "we can't do something fun without Abby," so I said "we are going to pick Abby up early at school and then do something fun."  Andrew was trying to figure out what we were going to do and decided that he thought we were going to Chuck e Cheese (just typing that name makes me envision germs :-).  Abby was surprised to see us at school to pick her up early and wondered what was going on, so I asked them if they were "ready to go pick up Daddy and Sissy at the airport?"  They squealed and we all hugged.  Andrew went on to say that that was way better than Chuck e Cheese (Phew!).  

The pictures tell the rest of the story...  

Together again at last!

The moment I held Grace and talked to her, she gave me the biggest smile ever (and has continued to bless us with more smiles and giggles than we have ever seen from her in one day) and my heart hasn't stopped overflowing since then!

Praise be to God!!!  

The journey continues...

Tuesday, March 19, 2013

Praises and prayers...

PRAISES for the day...
-Grace's cardiologist in Boston commented today on how great Grace looks and is breathing!  He was also very impressed at how much she was eating...  that's my girl! 
- NG tube (feeding tube) is officially and intentionally out!
-David was able to send me a couple pictures and videos of Grace smiling! 

PRAYER requests...
-Grace is cutting her first tooth and NOT happy about it (perfect timing, right?)!  To make matters worse, her night nurse didn't give her Tylenol as scheduled, so Grace was very unhappy in the middle of the night (and Daddy too :-).  This evening a different nurse was an hour late giving her Tylenol, so needless to say...  Grace has had some serious fuss bombs today! 
-We are praying that Grace gets the green light on discharge tomorrow.  Please pray that she is ready to go home (we want to make sure we are bringing a healthy baby home) and that it is a seamless process (getting a hotel, plane flight home when it's time, etc)
-We have prayed a lot about what to do regarding Grace's cardiologist in Texas.  Do we switch? If we switch, who do we switch to, etc?  We think that we have found a new cardiologist in Texas that would be a great fit for us because she trained in Boston (she did her internship, residency, and part of her fellowship there- that's a lot of time spent at Boston's Children's Hosptial :-), so she knows their philosophy and will likely be able to collaborate well with Grace's team in Boston.  Please pray that if she is supposed to be our new cardiologist that the switch will go smoothly and for us to be able to get in to see her when Grace gets home, etc.
-Please pray for all of the other families with "heart babies" in the hospital at Boston Children's (and everywhere really...).  It is truly a community of people that are all on this roller coaster together, so when you hear that another "heart baby" has hit a bump in the road it impacts us all.  Please pray that they/we would all find our hope, peace, and strength in the great Physician, Jesus Christ!

THANK YOU!!! (((BIG HUGS))) to each of you!

Monday, March 18, 2013


Praising God today that after a delayed echo and having to wait many hours for the results, Grace's  cardiologist said that he was very pleased with her echo!  Overall her heart looks the same as it did immediately after surgery, which is a good thing.  The biggest praise is that he said the left valve they built and left ventricle are already doing their job well!  They haven't grown any yet, because it is too soon, but we are beyond grateful for the encouraging news!  He did say that there was some stenosis in the mitral valve, but that's to be expected and should hopefully get better as that valve grows (Lord willing of course :-).  They are talking about a mid week-ish discharge, so David and Grace may be able to come home by the end of the week!  The bench marks that they are looking for are for Grace to show them that she can eat well (David just said she finished her whole bottle) and gain weight before they will let her break out of there :-).

Despite Grace's best effort to get rid of the NG tube yesterday, they had to put it back in today for her echo.  Hopefully they will take it out first thing tomorrow, or I'm sure Grace will do it for them if they take too long :-).

Grace's Nurse Practitioner did remind David that for her next surgery it will be a much longer stay.  It can be overwhelming to think that we have to go through all of this again in 6-12 months, but we are SUPER DUPER grateful for the work that they are doing at Boston Children's Hospital (that a bi-ventricular repair is even a possibility) and this has been a good trial run for the next bigger surgery and longer recovery time (closer to 8+ weeks, especially since Grace doesn't always read the text book on how you are suppose to respond after surgery :-).  Oh!  By the end of Spring, they should have a big construction project done, so possibly no more shared rooms!!! In His strength we can do it and find joy along the way!

We can't thank y'all enough for covering Grace in prayer today! You are the best "village" ever!

Sunday, March 17, 2013

Today was a good day in Grace's world and in Texas...  While I missed David in a big way sitting next to me at church today, I had my stand-in husband in tow...  Mary Ross (my Mother in Love).  We've been a great team this week, and it comes as no surprise, she has exceeded any expectations I could have had for our second stay-cation with Abigail and Andrew, while Gracie and David are in the hospital!

This morning, our Youth Pastor and dear, dear friend of our family, preached at church, where he did a GREAT job of helping us to better understand "How Does Jesus Love?"  We were reminded that often times God shows us His glory through our suffering, which ultimately strengthens our faith (if we find our hope and joy in Him alone).  Part of our workout routine to strengthen our faith muscles includes becoming comfortable with being uncomfortable.  This is something the Lord has put on my heart, since we received the call from the geneticist.  David is right, when he reminds me that "easy is not good" because it is when life is not "easy" that we are drawn to our knees at the foot of the cross.  That is when the love that Christ demonstrated toward us on the cross becomes magnified and our faith muscles grow stronger.  Too bad muscle memory doesn't just remember the lessons we have already learned, so that we don't have to be reminded over and over again throughout our time here on earth :-).   Thanks for allowing the Lord to deliver a powerful message through you today, BG!

A few praises from the weekend include...
-I have become pretty good at giving "smack downs" (like David), however, I will NEVER be as fun as he is because my "smack downs" usually turn into tickle fests because tickling is way safer than wrestling :-)
-We went swimming for the first time this year in my parents pool and had a great time!  Again, I had to try my best to be as cool as David by being willing to go from the jacuzzi to the pool over and over again with the kids, even though I felt like I might get hypothermia.

-David got to take a shower for the first time in 3 days!

-Yesterday, Mary and I had food delivered to David in the hospital, so he could have a few "real" meals, not just snacks. The restaurant made a mistake and sent him a dish with 10 different vegetables, instead of the appetizer sampler that we ordered (along with a yummy pizza and salad).  I think it was Divine intervention because David said that since he has eaten so much junk lately, his body was craving veggies :-).
-Grace was much more content today and eating well without spitting up!
-My favorite story of the day is as follows...
I asked David to please send me a picture of Grace smiling (I SO miss her infectious smiles) and he said  "Grace said that she would smile for a picture after she gets her NG tube out."  I asked when that would be and he said "sometime tomorrow."  Approximately 2 minutes later, David texted "Grace just went for it and yanked her NG tube out herself.  So, I guess it'll be today!" along with this picture...

PRAYER REQUEST- Grace has an echo tomorrow morning at 9:00 EST.  Will you please pray that everything looks better than good on the echo and that her Dr's have no hesitation in discharging her sooner than later?  If everything looks good on the echo, they could discharge her as soon as Tuesday or Wednesday.  THANK YOU!!!

Saturday, March 16, 2013

His mercies ARE new every morning!

Whew!  The last few days have been good, but busy here at the hospital.  Grace has been doing so much better since I (David) last posted on the blog.  Thank you for your prayers!  Overall, Grace has really improved over the last few days; however, she decided that she had slept long enough the first six days after surgery, so her last three days she decided that she would just take little cat naps here and there, but for the most part she has been ready to party, which means that by default I have also been partying.

She got a crib toy that she has been fascinated with, so instead of sleeping she watches this for awhile.  She has even figured out how to turn it back on when it shuts off (or at least she has gotten good at smacking it with the back of her hand and sometimes her hand lands in the right spot)

This is just one of the cool packages that she received in the mail.  She got another package with lots of snacks and stuff in it, but we don't have a picture of it because somebody already ate most of the goodies that came inside.

Grace just wanted to show you a picture of her scar and how well it is healing

 We also get to use this snazzy stroller to walk around the unit.  Sometimes daddy wants to use it more than Grace probably does, just so he can get out of the hospital room and move around for a minute.  

Today, has been a much better day than yesterday and she has already taken a three hour nap for the day.  Hallelujah!!  Thank you for your continued prayers.  Your prayers and comments have been a blessing to our family!  We are so grateful for each of you and pray that God may bless you and keep you, make His face shine upon you, and give you peace!

Over due update...

I hope that you enjoyed David's post a few days ago...  Please forgive us for not posting yesterday and for it being so late today, our lives have just been a little crazy (I don't know why :-).  I also apologize in advance that this post will be short and without a whole lot of detail.  The truth is that today has been a rough day emotionally for David and I!  Grace was moved to the step down unit yesterday (which is one step closer to being discharged), where the nurse to patient ratio is 4 to 1.  Therefore David is responsible for most all of her care outside of administering meds, etc.  Oh! and the step down unit has shared patient rooms, so David and Grace have just a thin curtain separating them from their neighbors (VERY little privacy :-).  We try to remember that while shared patient rooms are less than ideal, if they only had single rooms, they wouldn't be able to care for as many patients that are desperate for their amazing care (like us :-).

One of the reasons that the past couple of days has been so tough is because David and I hardly get a chance to talk or text because Grace is so incredibly needy right now (who can blame her).  Our poor little girl hardly sleeps more than 15 minutes at a time and when she's awake she needs David's full attention (he got 3 hours of sleep last night and couldn't even get away for meals today) making it hard for us to have any meaningful conversation.  Therefore, the updates that I get from David are usually VERY brief and infrequent (in comparison to my preference that is :-).  While the circumstances are not ideal, I can praise The Lord that some of the updates that I have received for today have been that "Grace is doing great," "she almost finished a 4 oz bottle without spitting up... yet" and "she has an echo scheduled for Monday, if that looks good, she may be discharged on Tuesday or Wednesday of next week."  All of those updates are certainly praise worthy, so I humbly ask that you would please join us in praising the Lord for Grace's progress and please pray for her continued healing with no more bumps in the road.  Please also pray for David and I to endure this difficult time (days) well, we feel like we are just trying to make it through each day until we can all be together again.  The verse that I'm clinging to right now is Lamentations 3:23 "Great is his faithfulness; his mercies begin afresh each morning." 

Thank you for being our "village"! We SO appreciate all of your prayers, encouragement and support!

Wednesday, March 13, 2013

Extubation Day

This is David posting, so if this post lacks the emotion and eloquence that you so frequently enjoy from Kristi's post, then just know that Kristi will be back in full-effect for future posts. Thank you so much for your prayers yesterday!  Grace had a much better day today, filled with many joyous events!  After waking up this morning, Grace had one of her internal lines that measured pressures on the right side of her heart taken out; she also had one of her arterial medication lines removed; then best of all, while the doctor's were doing their morning rounds, they walked into Grace's room and noticed that she was awake, so they decided on the spot to extubate Grace, removing her ventilator (Praise the Lord because when Grace was going through her withdraws yesterday, she would be squirming around which caused her to move the ventilator around in her throat and then she would get even more upset!!); she also was able to start taking food through the bottle today; and lastly, I was able to hold Grace for the first time since her surgery (I can't emphasize how awesome this is too much because I don't want Kristi to feel too jealous:)!

This is right after Grace was extubated!

Happy Daddy!

Again, I can't tell you enough how much we appreciate your prayers yesterday (and every other day as well).  In attempting to make this post as much like one of Kristi's as possible, I figured I would keep consistent by posting about a hug from God that I experienced yesterday.  In the midst of one of Grace's withdraw episodes yesterday, I just wanted to cry because she would glance at me, almost like she was waiting for me to help her, while in the midst of her little body twitching all over, her eyes rolling all over the place, gagging on her ventilator tube, throwing up, getting a fever, and there was absolutely nothing I could do to help her find relief.  It was terrible!  If that was too much information for you, I apologize (Kristi is much more sympathetic than I am, thus her filter operates better than mine).  Grace finally fell asleep (after receiving another dose of the medicine to ease her withdraws) and I walked over to the window to pray and after a few minutes I was about to erupt in tears and the chaplain poked her head in and had just stopped by to see how things were going.  What an amazing God we serve!  He knows that I am too prideful to want to reach out to someone at a moment like that, so He met my needs and humbled me by sending someone to me.  It is in these moments, where God transcends time and makes His imminence known, to a sinner such as myself, that I can do nothing other than praise Him!!

Tuesday, March 12, 2013

Rough day...

Today has been really rough so far, we could really use your prayers! Grace is experiencing serious withdrawal symptoms from the sedatives and pain meds that she's been on. She has vomited multiple times and is very agitated (jittery, looking all around, etc).  I know it's bad when David says "i'm glad you're not here to see it." While that statement confirms how heart breaking it is to witness our little angel in such distress, it is also a reminder that God has all of us right where we need to be (even though it's SO hard). Will you please pray for healing and comfort for Grace and continued strength for David to endure such a heart breaking scene. Please also pray for me.... I feel better after having had a really good cry, time of prayer and worship, but I could still really use your prayers :-).

I'm posting from my phone so I can't upload a picture of Grace with a cold wash cloth on her head as she battles these nasty withdrawals.  I will try to post a picture of our tough little cookie next post.

Thank you for investing in our family! We love an appreciate you!

Monday, March 11, 2013

Day 5 post surgery...

Grace was stable today and they are continuing to prepare her for extubation to take place tomorrow, or more than likely on Wednesday. They removed the line from her neck and placed a pic line (a line for them to administer medication and draw blood from) in her arm. They did this because she is such a difficult peripheral stick (rather than have to stick her a bunch of times and upset her, they opted for a pic line). They also took the line out that was measuring her LAP (left ventricle pressure) because her surgeon felt like people were treating a number not the patient (instead of looking out how Grace looks clinically and taking into account all of her numbers, they may have been making decisions based on one number on the monitor). Well, that's one less thing for me to obsess about :-). I use to ask David all day, everyday what her LAP was and he would even send me pictures of the monitor to prove that he was telling me the truth (of course I trusted what he was telling me, but a picture is worth a thousand words, right? :-)). David said that Grace is starting to move around again, since they took the paralytic completely off and are trying to allow her to wake up again, but with a different cocktail of medications that hopefully won't agitate her. Please pray for a smooth transition and successful extubation. David is getting so excited that she's moving again and closer to waking up. I feel like he's a kid at Christmas waiting to unwrap his big present... It's everything he can do not to get in that crib with her!

Oh! How I miss these two!!!!!!!!!!!

Sunday, March 10, 2013

Day 4 post surgery...

Grace has had a good day today and at his point they are continuing to work towards extubating her tomorrow or Tuesday. Her nurse for the past few days (who has worked in the CICU at Boston Children's for 15 years) is convinced that Grace is going to go "kamakazi" (her words) and need to be weaned off of the sedatives and extubated all at the same time because she dislikes being intubated so much and therefore gets super agitated when the sedatives come off. This is the first day that our family is split up and I can't say that it's been easy. I miss not being able to see and touch Grace and sleeping next to David in a big way, but in God's strength we will get through this with a heart full of gratitude. I shed a lot of tears during worship this morning at church for a multitude of reasons... I was overflowing with gratitude for God's goodness, peace, and unmerited favor during such a difficult time in our lives and humbled that our God has experienced the heart break that a parent feels watching a child endure and even suffer. He not only watched His perfect Son endure suffering, but extreme suffering to the point of death. He could have easily reached down and plucked His Son off of that cross, cuddled him and healed His wounds, since that is the hearts desires of any parent when we see our child suffering (even if they are a big kid). If we had the chance to take away our child's suffering (even if it meant that we take the suffering on ourselves) we would all jump at the chance and yet God (who knows the most pure form of love possible), chose not to rescue His Son, so that we could have eternal life. That act of love blows my mind and makes Romans 8:32 "He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things?" jump off of the page and into my heart. I worshipped today and wept because I know that I/we are not alone on this journey and that our Heavenly Father knows and sees our deepest heart ache and yet He has the perfect remedy, more of Himself! If our ultimate goal is to be as close to Christ as possible, "suffering" is a gift in that it gives us more of Him (the only gift that truly satisfies). I need more of Christ each moment because otherwise I don't know how I will be the parent that Abigail and Andrew need me to be here, while also trying to be the parent and wife that Grace and David need me to be from a distance. Please pray that the Lord would continue to strengthen David.  He misses Abigail and Andrew in a big way and while he loves being there with Grace, he hasn't been able to experience her joy and sweet smiles (because she's still knocked out), so he probably feels very much alone.  Thank you for letting me share my heart with you. Thank you for covering us in prayer! Your prayers have been felt as if they were a warm blanket, just coming out of the dryer with a fresh linen smell on a freezing cold day!

This picture brought me great joy today!  Our precious little girl looking less puffy and sweeter than ever.  Good thing she's still knocked out because that bee looking stuffed animal that they are using to prop up her tubes is scary!
Sorry this picture is side ways, blogger won't let me post the rotated version :-(

Saturday, March 9, 2013

Day 3 post surgery...

Today was a LONG, but good day! I had to leave Grace's hospital room at 9:10 am (at the latest) in order to get to the airport in time, and thankfully, Grace's team finished rounding on her at exactly 9:10 am.

They were very pleased with how Grace was progressing and planned to remove one of her chest tubes and catheter, while trying to wean her off of morphine, in order to begin weaning her off the ventilator, in preparation for extubation. When they began weaning her morphine, she got very agitated/restless and moved around more than they were comfortable with because her body was quickly eating through the sedatives that they were giving her (which is common in children with Up's). So, it's a fine balance of tryng to allow her to wake up enough so she will breath on her own, but not so awake that she gets agitated and puts herself at risk of pulling out tubes by accident, etc. Since her episode of getting agitated, the pressure of her Left Atrium has been on the high side. Will you please pray that her numbers get back into a normal range sooner than later and stay there? THANK YOU!!!
I spent most of the day traveling home (which was pure torture not being with David and Grace OR Abigail and Andrew for most of the day) and was beyond blessed to turn the corner on the way to baggage claim to see Abigail and Andrew running toward me screaming "Mommy!!!!" each with a boquet of flowers flopping around in their hands! All that they wanted to do when we got home was snuggle, which was fine by me! I LOVE SNUGGLES!!!

Friday, March 8, 2013

Day 2 post surgery...

I'm always reluctant to post an update before the day is over because we know all too well that anything can happen, but glory be to God, Grace has had a great day so far!

It snowed last night and through most of the day today which was a sweet hug from God because we were able to enjoy the beauty of it from our hospital room, instead of having to be out in it...  Here is a picture of our walk to the hospital this morning as we passed a snow plow...
When we walked into see Grace, the numbers on her monitor looked great.  The plan for today has been to take off the muscle relaxer/paralytic (which keeps her from moving), but still keep her sedated (completely asleep).  They weaned her off of most of the cardiac meds, except for a low dose of dopamine.  She will start getting a very small amount of formula through an NG tube (the tube that goes through her nose and into her tummy) this evening.  Today has been a great day and we are praying that when we come in to see Grace early tomorrow morning, before I have to leave (to fly home), that she will be doing just as good or even better, so I can leave with the peace of mind that she is doing well.  Another hug from God came when we got back from lunch and found that someone had put a sweet little bow in Grace's hair...  It's the little things some times :-)
Two other God hugs have been just how AMAZING every single one of the Dr's and nurses that we have encountered here have been.  That statement alone doesn't even begin to do our feelings justice, so I will try to do a better job of putting into words what an incredible hospital this is at a later date.  The other hug has been seeing Grace's little movements and hand squeezes since they have taken her off the paralytic.  While they are all involuntary movements on her part, they still make us smile!

We were bummed that we had to miss Rodeo Day at Abigail's school today, but we loved and appreciated the pictures and videos that David's mom took for us!  Here is Abigail and her BFF Ju Ju...
Please pray for Andrew, he had the stomach bug last night, so he not only missed school today, but he has to miss a sleepover that he and Abby have been SO looking forward to for over a month.  They are going to reschedule it for sometime next week (since it will be spring break) when everyone is healthy, but it breaks our hearts that he was so let down.  Please pray that it was just a 24 hour bug, nobody else gets it, and that both him and Abby will have a great night and day tomorrow, even though they aren't having a sleepover with some of their favorite people.  We can't leave out the best big and little Brother ever, so here is a picture of Andrew at his rodeo day last week...

Thursday, March 7, 2013

Day 1 post surgery...

Please forgive me for not posting sooner today, our computer ran out of battery (David was busy doing school work whenever possible today) and we left the charger in our hotel room.  Grace is doing well.  She is still intubated, heavily sedated, on paralytics, and giving her Mommy heart attacks :-).  It didn't take long for David and I to be reminded of what a roller coaster ride it can be in the CVICU after major open heart surgery.  Things can be fine one second and not so fine the next... For instance, as her Dr's and nurses work to get one number under control (like her heart rate or blood pressure), one or two other numbers go out of whack.  This is all a normal process of recovery, but it doesn't mean it's easy for Mommy and Daddy to watch.  Praising God again for allowing David to stay with Grace while I go home to be with Abigail and Andrew (who we miss to pieces!!!!) because if I had to be at the hospital alone with Grace (riding the CVICU roller coaster alone) I might need heart surgery myself :-).  Please keep the prayers coming for Grace's numbers to all even out and that the left side of her heart and valve will be able to take on the additional work load and GROW!  Thank you prayer warriors!!!

Another part of our adventure is the fact that we stand out like a sore thumb here in Boston...  Surely people look at the way we are dressed (especially David) and think "CLEARLY they aren't from here..."  This is what David wore yesterday in 30 degree, rainy weather (we were just entering the hospital after walking outside)...
Here is what he wore today in 30 degree, windy and snowy weather (my light fleece sweatshirt)...  You will notice he's squinting because we discovered that it is uncomfortable when snow pelts you in the eyeballs :-)

Wednesday, March 6, 2013

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!

Tuesday, March 5, 2013

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).

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)))

Monday, March 4, 2013

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!

Friday, March 1, 2013

"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.