Thursday, October 31, 2013

Praying for a miracle!

Overall, Grace is doing well today (Praise the Lord)...  the scary part is what the future holds!  I spoke with our local cardiologist tonight (remember she has been our biggest advocate) who has spent the day answering questions from EVERYONE at TCH "Why did they go to Boston?  Why didn't they just do a single ventricle?"  The simple answer to that is... "how many teenagers/young adults with Down's Syndrome do you know with a single ventricle?"  The answer is not many because the long term outcome is very poor!  God led us to Boston because it was our only hope.  It feels like the team at TCH has written Grace off as if she's a lost cause.  Boston seems to be more optimistic and is ready and willing to open a bed for her in the ICU tomorrow if needed (I think that they would go ahead and replace her mitral valve).  I love our local cardiologist, however, I got off of the phone with her feeling super discouraged because it seems like nobody in Texas (except her) believes that there is hope for our Gracie Doo.  They think that what Boston does is so rogue and they don't agree with the risk they take.  The truth is that Boston sees the toughest of cases, so Grace isn't really out of the norm for them; however, at TCH, Grace is the exception.  I tried to put on a happy face as we went out with friends trick or treating, although I know I did a terrible job of that; I tend to wear my heart on my sleeve, especially when it involves my babies.  I felt like I could barely breath and put one foot in front of the other until we ran into a sweet friend (that we hardly get to see, but we have both spent some time in the fire together), all she had to do was ask how I was doing and I broke down.  She then reminded me of the exact truth that I needed to hear at that moment...  "It is NOT over!  Our God is not a God of statistics!"

Happy Halloween to our little little angel!  I miss her scrunched up nose when she smiles and those almond shaped eyes so much that I feel it in my bones :-(

I don't know how long God will allow Grace to be on this earth, but until He calls her home we will pray for a miracle, trusting that He's not done with her yet!  Will you please join us in praying that Grace will have a phenomenal weekend and proves everyone at TCH wrong (even if He doesn't, we will praise Him anyway despite the fact that we will be so very broken)?

The short term plan is to watch her over the weekend, giving her some time to settle out.  On Monday, our local Cardiologist will be presenting Grace's case to the entire Cardiology team at 8:00 am CST (surgeon, cardiologists, etc) and at that point they are going to decide what they will or will not offer Grace at TCH.  At that point, there is a huge likelihood that we will be life flighted back to Boston if TCH doesn't have any other options for Grace.

Village, we have NEVER needed you more...  Will you please get on your knees before the Lord and ask that He heal Gracie's heart and lungs and proves every one at TCH wrong?

Here are our other two angels who know how to bless there Momma with their sweetness...
Tucker and Twinkie dressed up as a skunk and a squirrel (the same thing they are every year since new costumes for them just aren't in the budget :-) 

This picture does not do it justice at all, but God revealed a glimpse of His glory in the beautiful sky tonight!  It served as a sweet reminder of His presence...

Wednesday, October 30, 2013

Crash cart = NO BUENO!!!

Let's just say that the crash cart being pulled out makes for a rough day :-(.  I'm emotionally and physically exhausted, so here is the readers digest version...  Over the past couple of days, Grace has been having a more and more difficult time breathing, due to fluid in her lungs (it is still unknown if the fluid is a result of some sort of infection, part of the recovery process, or a sign that her hearts new circulation can't carry the load).  It finally became too much for her little body this morning, her lips turned blue and she was really struggling to breath, so they called for the crash cart and paged the Rapid Response Team (which caused about 25 different doctors and nurses from throughout the hospital to swarm into Grace's room).  By God's grace they didn't need to do chest compressions or breathe for her (she was breathing on her own) and they were able to intubate and stabilize her before taking her to the ICU.  It is a gut wrenching and heart breaking experience to get a text that "they are bringing out the crash cart to be safe." A praise is that I work in the Medical Center (which is where TCH is), so after receiving that text, I sprinted down the street as fast as I could while crying and praying out loud, "God, please don't take her home now..." (this has been a looming fear of mine that has been very difficult for me to shake the past few days).  When I rounded the corner to head toward Grace's room, I saw about 25 people in gowns pouring out of her room (including the chaplain) with all kinds of equipment on hand.  The attending did an exceptional job of running a tight ship during a super scary and critical time, while numerous people made sure that David and I were alright (explaining to us exactly what they were doing along the way, the chaplain prayed with us, etc).

Here is our little angel after all the excitement...  
Now this is more like the Grace we know...  a few steps forward and a giant step back!

It seems as though maybe Grace was discharged a little too early from Boston (she put on a good show for them, making recovery look easy), but we trust that God wasn't surprised by today's events.  Maybe it is a blessing in disguise that she was discharged from Boston so early, that way she could finish out her recovery close to home at TCH (Lord willing of course).  It IS such a blessing to have them close to home and literally down the street from where I work.

They did an echo this evening, but we haven't received the results yet.  Will you please, please, please, please, please pray for good echo results and that the cause of all this craziness is just a sign that Grace needs a little more time to recover (maybe she does need 2-3 months) and that the road to recovery would be smooth?  Please also pray for David, Abigail, Andrew, and I as we try to navigate this uncertain and difficult time.

Thank you sweet Village!  We need you more than ever right now!

Monday, October 28, 2013

...and the Divinely designed roller coaster continues...

Well, Grace has decided that she has more love and entertainment to give, so she wanted to take her show on the road and share that extra love with the Dr's and nurses in her home hospital.  They admitted her to TCH (Texas Children's Hospital) this afternoon because her oxygen saturations were low and it was clear that she was breathing heavy.  Deep down, I sort of knew this was going to be the case because she has just not been herself the past few days (more fussy during the day, inability to sleep very well beyond a few hours, heavier breathing, etc).  I have been thinking that she needs better pain control (something stronger than just Tylenol) which may allow her to take deeper breaths more comfortably, instead of short, rapid breaths that don't allow her to move secretions/fluid through her lungs very well.  Her Cardiologist agreed that that could be the root cause and they are also testing her for a viral or bacterial infection since her lungs look very wet.

This is what Grace thinks about sleeping these days...

Today's PRAISES...
-she is being monitored closely, which gives us a peace of mind since sitting at home and worrying doesn't do anyone any good
-David feels like he is at a resort because he has his own room (verses a shared room like in Boston), that has a sleeping thing that resembles a bed far more than the reclining chair he had in Boston and he has his own bathroom!!!

"Party time... Daddy and I are at a spa resort (also known as Texas Children's)..."

Today's PRAYER requests...
-this is just a part of the recovery process and not something more (like a precursor to a failing heart or lungs).  The pressures in her heart (via echo) were much higher than they should be, but we are hoping/assuming that it's just do to the fact that her body was in distress (please, please, please pray that that is the case)
-strength, peace and rest for David and I!!!  I'm exhausted trying to hold it together for everyone and everything (Abby and Andrew at home, Grace and David in the hospital and a very busy season at work...)


So, our Divinely designed roller coaster continues :-)...  We will continue to cling to God's promises, trust His character and thank Him for our faithful Village!!!  XOXO

Sunday, October 27, 2013

Recovery stinks...

Recovery stinks... but we remain immensely grateful that we have our sweet Gracie girl home!  Sweet Village, we could really use your prayers for ...

-Grace's Cardiology appointment tomorrow at noon (she will have a sedated echo), that we get only good results
-Grace would SLEEP well at night!  Some how I forgot that post surgery recovery is like having a newborn all over again.  Last night David and I got a total of 3 hours sleep (and that's a generous estimate) because Grace's sleep schedule is ALL out of whack and then she gets herself so tired that she does fuss bombs (and fuss bombs worry her mommy to pieces)...  You get the picture :-)

This is what Grace and I were doing at 2 am this morning...

-Wisdom to know, when and if there is a need for us to worry about Grace.  It's hard to know if Grace's fussiness is related to a lack of pain control from surgery or if her heart isn't functioning well and causing her to not feel well, etc.  There is always that part of us that is waiting for "the other shoe to drop" because things have gone so well post surgery thus far.  This is what I'm trying to set my mind and heart on...

We have tried to take it easy this weekend, so we have spent time playing at home, watching movies, snuggling, and we did venture out to a Trunk or Treat this afternoon...

This bump in the road just serves as a reminder that this is a life long journey where we are being refined in to Christ's likeness, while praising Him on the mountain top, but much more so when we are in the fire.  Thanks for joining us on all terrains of this journey :-).  XOXO

Wednesday, October 23, 2013

The best homecoming EVER!!!

So, I told the kids that we were going to put our Team Gracie Doo shirts on because when we get home from running errands, we were going to make a video for Gracie to encourage her to keep getting better fast, so that she can come home soon.  I had them pick out a movie to watch in the car while we ran our errands and they remained distracted up until we pulled into the airport and when they asked why we were there, I simply said that the errand we had to run is right by the airport.  As we were parking at the airport, Andrew was saying that he wished we could just get on a plane and go to Boston right now...  Once we parked, they some how still had no idea what we were doing at the airport and they seemed to have bought the idea that they were just running an errand with me (they had such a great attitude about running errands :-).  Before we got out of the car, I said "Oh! Daddy just sent us a video, so they gathered around and watched a video with Gracie in it, saying (via David's voice) "Hi Abby and Andrew! God has been SO good that I get to come home today!  I can't wait to see you guys!"  Abby looked at me with big eyes and said "TODAY?"  I replayed the video for them and when they realized that we were at the airport to pick them up today, they both squealed and said "these are the best errands ever!"

The reunion that ensued was a little slice of heaven...

First line of business... smother Grace...

Then, love on Daddy...

Y'all have stood in the gap, bore our burden's and in essence, lived out Romans 12:15 "15 Rejoice with those who rejoice, weep with those who weep" in our lives in a profound and tangible way!  There truly aren't words to express our love and gratitude for each and every one of you, so please trust us when we say that you are more than family and friends, you are our Village for whom we adore and appreciate!!!  We still have a long road ahead of us (Lord willing) that will undoubtedly be full of peaks and valleys, so please stick with us and pray us through this journey for which we are honored to be on.  (((BIG GIANT HUGS))) 

Tuesday, October 22, 2013

Post op day 11...

Today's PRAISES...
-Grace's chest x-ray looked good!!!
-Wait for it...

"We are about to break out of this joint..."

Lord willing, David and Grace are coming home tomorrow!!! Can you believe it?!?!  We can't... :-)


So, they "technically" discharged Grace today, but they (David and Grace) are staying one more night in the hospital and "officially" being discharged tomorrow because there isn't a hotel room to be found in Boston right now since the Red Sox are in the World Series.  It is such a huge praise that the nurses worked to make a way for them to stay the night in the hospital an extra night, otherwise they would have had to find a hotel way outside of the city that was almost $500 a night, not to mention, we love the idea of having the nurses eyes on Grace up until the moment that they head to the airport.  As if that's not enough, David and Grace will have a personal escort when they arrive at the airport tomorrow to help expedite checking in, getting through security, etc, complements of case management at the hospital.  GOD IS SO GOOD!!!

The last thing that I want to do is misuse or misrepresent this word, but we seriously feel like this is a miracle!  We have plane tickets to go visit David and Grace in Boston in 15 days; I've been planning how to get the kids and I through Andrew's birthday; Thanksgiving; and even Christmas, without David and Grace because we were told to plan on Grace being in the hospital for 2-3 months. Grace's post surgical recovery the past two times around were brutal (an emotional and physical roller coaster to say the least), so the fact that Grace is being "technically" discharged after just 11 days and that her recovery has been so "smooth" (by Grace's standards that is :-) is indescribable and unbelievable (from a worldly point of view).  This journey has in no way been "easy" (and we still have a long road of recovery once she's home, but at least we will all be under the same roof).  This has been an awesome experience in a way that only God can make it awesome.  This bible verse is really the best way to sum up our feelings...

Ephesians 3:20-21- 20 "Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, 21 to Him be glory in the church by Christ Jesus to all generations, forever and ever. Amen."

-NO HICCUPS!!!  Please pray that Grace has a great night and day tomorrow and that her and David have a safe, seamless, and germ free trip home!
-The enemy would in no way squelch the joy of our family being reunited
-As I mentioned before, we still have a long road of recovery at home with Grace (we will have to keep her as quarantined as possible through cold and flu season and lots of cardiology appointments to keep a close eye on her, etc)
-GOD WOULD GET ALL OF THE GLORY and that our measure of "awe" in Him and all that He has done would not ever fade!

Monday, October 21, 2013

Post op day 10...

Today's PRAISES...
-Grace's sedated echo results today were good (which means they were unchanged from what they saw in the operating room, so that is good, we will take it :-)!
-She has continued to eat even better than she did before surgery!
-She has remained off of oxygen!
-We did Face Time with David and Grace tonight, which was a treat to get to see Grace's personality live and in action, but seeing David made my heart melt (I sure do miss my man!).
-Grace got to change her clothes...

"Sometimes my Daddy forgets that I need a costume change, but he did it for Mommy tonight.  Here is my BEFORE..." 

"and AFTER..."
Ummmm...  I want to eat her, she is SO stinkin cute!!!

***please, please, please pray that her chest x-ray looks good tomorrow!  They stopped the second diuretic today, so she needs to show them that the lasiks alone can keep her fluid in balance (this is a VERY important component to even considering discharge anytime in the near future).
-Grace continues to do well eating, maintaining her oxygen levels, vitals, labs, etc (please pray that nothing goes out of whack...) and that God gets all of the glory!

Y'all continue to bless us with your prayers and encouragement, thank you, thank you, thank you!!!  

Sunday, October 20, 2013

Post op day 9...

Today's PRAISES...
-Grace got a bath for the first time in 10 days!!!
-X-RAY looked much improved today, so we are on for a sedated echo at 9:00 am EST tomorrow
-No more oxygen (for now at least :-).  They may put it on her while she sleeps, but praising God for the oxygen free face for now
-I got to spend some time hanging out and chatting with my Daddy (while my sweet step-mom played with Abigail and Andrew :-)
-Abigail and Andrew continue to bless me with their silly antics and sweetness.  Andrew melts my heart when he randomly says "your the best Mommy ever.  I'm grateful God gave me you as a Mommy because I wouldn't want any other Mommy." Another measure of sweetness was when we were all suppose to be sleeping last night and I could see Andrew just rubbing Abby's cheek and then her hand (I can't help but praise the Lord constantly for their relationship). Abby blesses me with her servants heart.  She will almost always help Andrew pick up his room without being asked or she will rush to do something that I've asked Andrew to do (most often it is to put his clothes or toys in his room :-).  She will let Andrew choose first on most things and looks for opportunities to encourage him and others (especially kids with special needs...  I have some precious stories to share with y'all about how God is using Grace in Abby and Andrew's lives, giving them a love and passion for special needs kids).  Don't get me wrong they are in NO way perfect kids, they are sinful human beings just like the rest of us, but their silliness and sweetness really minister to me for which I'm super grateful for (especially during times like this where I feel broken inside missing David and Grace)!

-Grace's sedated echo tomorrow morning would produce stellar results!
-Grace would keep her oxygen levels in the mid 90's on her own
-They would be able to easily and quickly find the right lasiks dose for long term maintenance.  She is on 2 different lasik type medications, one of which she can't go home on, so they need to find the balance of keeping the fluid off without drying her out on just the one medication
-Peace, strength, and joy despite our family being split up :-(

Isaiah 40:31 but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

Saturday, October 19, 2013

Post op day 8...

Today's PRAISES...
-Grace has continued to eat well!
-Grace was able to wean down to .25 liters of oxygen (there is just one more level to wean down to before she is totally off of oxygen)... slowly but surely :-)
-Grace is even more herself again today... she is performing her "tricks" again.  She uses them to make people smile or to get them to talk to her (she does "sooooo big", blows kisses, does the funniest growl and then a big cheesy grin afterward, etc)

Happy pants on a walk... David get's to tote that big oxygen tank around with them on walks.

-let's just say that the lasiks seem to be working, she fills one diaper after another (praying her x-ray tomorrow reflects all of her hard work :-)
-I got to have a fun day with the big kids (Abby and Andrew).  Abigail's soccer team won their game and she scored again.  We also went to a fundraiser for the American Heart Association at a local hospital, played at a park, and we are currently having family movie night (at home).  Next on the agenda is EBT (early bed time), where we will all pile in my bed because it's been lonely sleeping alone.  I'm so desperate for some snuggles that I'm willing to sleep next to my two little heaters that are either on top of me while we sleep (or while they sleep and I lay awake wondering why I thought it would be different this time :-) or kicking me.  It is worth it though...

We got to see a Life Flight Helicopter land and the kids got to tour the inside of it... The theme of the event was "Super Hero's" so you were suppose to dress up as your favorite super hero, that's why we wore our Team Gracie Doo shirts (she is our favorite super hero)!

-Grace would be able to get off of oxygen completely as soon as possible (all in God's timing...  Dear Lord, tomorrow would be a fantastic day to ditch the oxygen :-)
-Grace's x-ray tomorrow would look significantly improved and that they would be able to move forward with a 9:00 am echo on Monday
-Grace would get the memo that she needs to sleep tonight.  Every other day she boycotts sleeping during the day or at night.  Unfortunately, she didn't consult David on that strategy, so he suffers with little to no sleep
-God would continue to use David to minister to his roommates (he is on his 3rd roommate in 4 days)
-great sedated echo results on Monday (assuming her chest x-ray looks good enough to have it done)

II Samuel 22:33- "It is God who arms me with strength and makes my way perfect."


Friday, October 18, 2013

Post op day 7...

PRAISES for today...
-Grace has continued to polish off her bottles without much spit up.  Those of you that know Grace know first hand what an immense blessing that alone is (I have shed many tears over her eating).
-David said that the "welcoming committee" is back, which means that Grace is back to welcoming everyone into her room with a smile, a wave and maybe some "interpretive dance" (she does this thing where she stares at her hands and moves them around like she is doing some sort of interpretive dance...  We love to watch it because it is so precious and hilarious all at the same time)
-they didn't end up doing a sedated echo today because her lungs looked more "wet" than the previous day (most likely because they had reduced her lasiks), so they didn't want to sedate her with that amount of fluid on her lungs.  They did an unsedated echo instead and Grace was actually super still for it!  It took forever to get the results back, but we finally got the reader digest version from the Nurse Practitioner (our Cardiologist, whom we adore, is in Argentina giving a presentation and we are missing him in a big way).  The gradient across her mitral valve is the same that it was in the OR (which is certainly a praise) and the pressure in her right ventricle is a little elevated, but they don't seem to terribly concerned about that (I don't think).

"Daddy must have read the blog because he gave me a fresh hair doo :-)"

-Grace would be able to continue to wean off of oxygen completely and maintain her O2 sats

This is what Grace thinks her oxygen is for... a teething toy.  David is always having to reposition her oxygen because she likes to pull it out and chew on it or sit it on top of her nose.

-they would be successful in getting the fluid off of her lungs over the weekend and that her chest x-ray on Sunday evening will look much improved, so that they can proceed with a sedated echo on Monday at 9:00 am
-beautiful echo results on Monday!!!

This is the prayer that the Lord put on my heart this morning...  It is only in His strength that this is even possible because it is all too easy to be consumed by our own circumstances that we don't have enough left in us to bless others.  

Village, your prayers, support (financially and otherwise), encouraging messages, texts, etc continue to draw us to our knees before the Lord with immense humility and gratitude for you.  Thank you for allowing Him to use you in our lives in such profound ways!

Thursday, October 17, 2013

Post op day 6...

Answered prayers for today...  Gracie Doo (and subsequently David :-) pretty much slept through the night last night (that's huge for Miss. Grace).  She also started eating orally and is doing better than we expected in that department!!!

"Check me out, no more feeding tube!"

She has also perked up even more...  the little ham that we know and love is waving to people and winning them over with her sweet smile again.

"I have the worlds best Daddy EVER... even though he never really remembers to do my hair!"

-Grace is suppose to have her echo at 11:00 am EST tomorrow.  The results are super important because it will dictate how soon she can come home, whether she needs another surgery (before coming home), etc.
-Grace is needing a small amount of oxygen (.5 liters) to keep her oxygen levels where they would like them.  Will you please pray that she can come off of the oxygen quickly because that will most definitely keep her in the hospital for a while?

Thank you, sweet Village!!!

Wednesday, October 16, 2013

Post op day 5...

Grace had a good day today!  We are praising the Lord that she seems to be tolerating her feeds via the ng tube (tube in her nose that dumps the food into her belly) pretty well and she is getting her spunk back.  She is actually smiling some and back to her rascally ways...  The second David takes his eyes off of her, she rolls onto her tummy and then smiles about it (she's on sternal precaution, so she isn't suppose to be on her tummy).  Grace also got a visit from a therapy dog today.  She was interested in looking at him, but NOT touching him (or getting too close).

Her face says it all...

I miss David and Grace terribly, but fortunately Abigail and Andrew are world class snugglers and know how to make their Mamma smile through the heartache.

Village, will you please pray specifically that...
-Grace tolerates oral feeds exceptionally well (no dry heaving or throwing up), they are starting them back up tomorrow
-her chest x-ray improves and shows less fluid on her lungs
-Friday's echo results show a healthy heart and that God would get all of the glory!
-we would praise God for the blessings right in front of our eyes and not be concerned about tomorrow or the "what if's" ("what if" the wheels fall off tomorrow, putting Grace in danger and keeping us apart longer, but instead, trust that "even if" that happens, God's got it).

THANK YOU!!!  We love you Village!!!

Tuesday, October 15, 2013

Post op day 4...

This is David...  Praise God!  Grace's recovery has gone so well that she has already been moved out of the ICU and onto the recovery floor (nursing ratio is 4-to-1, instead of 1-to1).  Grace's cardiologist and her surgeon are both very pleased with how well she is doing.  To be honest, I am very pleased as well.  I feel like I am hesitantly happy with how great she is doing, since her recovery thus far has been so much better than either of her two past surgeries, I feel like I am just waiting for something to go wrong at some point.  However, when I catch myself thinking like that, I have to confess and ask God to forgive me for not rejoicing and praising Him for how great Grace is doing.  Kristi and I came into this surgery with the understanding that we would be here for two to three months.  When I spoke with Grace's surgeon this morning, he stated that, assuming she continues progressing like she has been, then we might be out of the hospital in 7-10 days (What?!?! we are having a hard time even wrapping our minds around that being a possibility).  Please praise God with us for how great Grace is recovering thus far, and also pray that she will continue to do great.  She needs to get more fluid off of her lungs, begin normal feeds (thus far she dry heaves or throws up when she eats, we are praying it is just a sign that her tummy needs to advance feeds at a slower pace, not a bigger issue of some sort) and have a sedated echo that looks good before discharge can ever become a reality.

Although today was great, with Grace moving to the recovery floor, it was bitter sweet because Grace and I had to say goodbye to Kristi this morning and Kristi missed getting to hold Grace by a couple hours.  While it seems as though the past 9 days should have been a little wearisome, it has actually been a tremendous blessing for Kristi and I.  It seems like God blessed us with some much needed time together, so it turned out to be a sort of surgical honeymoon for us.  It is wonderful to experience God's hidden blessings in the midst of trials, and God certainly blessed Kristi and I (and Grace) these past 9 days.  Thank You, Lord!!!

Monday, October 14, 2013

Recovery :-/

Long, rough day so far....  Poor Gracie Doo is happy to have the breathing tube out, but now she's dealing with withdrawls from the pain meds and throwing up from getting air in her belly from the nasal canula that they put in to help her be more comfortable (not have to work so hard to breath)...  David and I are dealing with the heart ache of watching your baby go through withdrawls, throw up and not being able to hold her.  It doesn't look like I'm going to be able to hold her before I leave because she still has her arterial line and the line in her neck in, which they can't afford to lose (especially since she already kicked out the line they had in her foot).  

While I'm bummed I can't snuggle Grace yet, I can't wait to snuggle Abby and Andrew tomorrow!!!

Thank you for praying us through this ugly and hairy time of recovery.  (((hugs)))

Recovery :-/

Long, rough day so far....  Poor Gracie Doo is happy to have the breathing tube out, but now she's dealing with withdrawls from the pain meds and throwing up from getting air in her belly from the nasal canula that they put in to help her be more comfortable (not have to work so hard to breath)...  David and I are dealing with the heart ache of watching your baby go through withdrawls, throw up and not being able to hold her.  It doesn't look like I'm going to be able to hold her before I leave because she still has her arterial line and the line in her neck in, which they can't afford to lose (especially since she already kicked out the line they had in her foot).  

While I'm bummed I can't snuggle Grace yet, I can't wait to snuggle Abby and Andrew tomorrow!!!

Thank you for praying us through this ugly and hairy time of recovery.  (((hugs)))

Post op day 3...

AGH, again!!! and YAY!!!  The same attending was on rounds today (however, we had back the fellow that we really like) and in what I'm learning is his terrible sense of humor, he walked into the room and asked who put in her new bow (maybe we should give him credit for noticing that she had a new bow in)? I jokingly said that we put in a new bow to celebrate what we hope is extubation day!  He asked "are you superstitious?" I said "not a bit superstitious, we are trusting God all the way, the bow is just some added flare."  He proceeded to examine her, walked to the edge of the doorway and says "she squeaks..."  I said "so, what does that mean?"  He put his arms up and smirked (not the warm fuzzy smile, but more like "guess you will have to wait and see").  Rounds went on and our favorite fellow did a great job of highlighting all the the things that Grace has been doing and then said "I think that she's earned her extubation."  YAY!!!  Lord willing, Grace will be extubated some time in the next couple of hours!  It can't come fast enough because Grace has made sure that everyone knows how much she hates the breathing tube.  All of her nurses have been begging for her to be extubated because they are with her 24 hours a day and see how miserable she is.  Will you please pray for a seamless extubation (it can be a very hairy situation)?  

"Check out my extubation celebration bow"...

One down side of being in the hospital is that no exercise takes place and candy is a signature.  Hopefully, some new scientific data will show that a bag of Good n Plenty's will keep the Dr. away (apples are over rated :-).  It's 10:00am and I've already finished my daily bag of them :-/

Once she's extubated, it will officially signify the beginning of sleepless nights for us (mostly David, since I leave tomorrow).  One huge blessing of Grace remaining intubated yesterday is that David and I were able to go to church together last night.  The pastor did an amazing job of literally teaching through the whole bible in about an hour!  He especially focused on what communion signifies, why it is so special for us to participate in, and the type of heart condition that we should have when taking communion.  There wasn't necessarily anything new that he taught us, but it is so amazing how God can make His word so powerful to you that it's as if your hearing it for the first time.  I love that!  It was a great reminder that while we were disappointed that Grace wasn't extubated yesterday, there was a very good reason for that!  God used it for good in that He allowed us to sit under some great teaching and have sort of a date night.  

Well... I didn't even have time to publish this post because Grace made it clear that she was ready to be extubated now!  They extubated her about 30 minutes ago and she seems to be doing good, so far (praise The Lord).  Please, please, please pray that she continues to do well being extubated because this is the time that she is either going to sink or swim.  Thank you praying Village!!!  There are a number of you that I need to text, facebook message, or e-mail back to thank you so very much for your encouragement and prayers.  Until I have a chance to do that, please know that each word that you have taken the time to type has been imprinted on my heart forever!  There is something magical that happens when you are lifted up by the body of Christ, so thank you and please don't stop :-).

"Look, no breathing tube..."

Sunday, October 13, 2013

Post op day 2...

Agh!!!  They just did rounds and while we think that Grace is doing awesome (compared to... herself), the first thing the attending says is "I wish she was doing better and not so up and down."  I was taken back because, like I said, we think that she's doing great and all of the other feedback that we've gotten has been the same.  As the fellow began presenting the case and the attending got to hear that her mixed venous blood gas was good (meaning that the coldness of her extremities was more environmental versus poor cardiac output) and other labs looked good, he asked the fellow if "he wanted to declare it a victory."  The fellow was extremely hesitant, but they both agreed that she is doing great for Grace (certainly not "normal" or "perfect", but great for Grace and that is praiseworthy in our book :-).  This is exactly what happen last time we were here... they kept talking about extubating (taking her breathing tube out) tomorrow and then tomorrow became the next day and then the next day, etc until I had to go home before ever getting to see her extubated (but more importantly than just being extubated, I didn't get to hold her- BIG SAD FACE).  While she has the breathing tube in they have to keep her super sleepy because the second they lift the sedation a touch, as the night nurse put it when we called in the middle of the night to check on Grace, "I tried to wake her up a little and she woke up fast and was like an alligator" (you know how alligators do the alligator spin where they spin in circles?).  She certainly likes to keep everyone on their toes.  The main reason they can't extubate her yet is because they need to get a better hold on her fluid balance :-/.  Again, this is such a dance with Grace because you have to give her enough medication to pull fluid off, but not dry her out too much.  Will you please pray that her fluid balance would get under control quickly and that she would blow the Dr.'s and nurses away with how stable ALL of her numbers are and that she would stay comfortable (did I mention how much she HATES the breathing tube?).  It's also painful for us to watch her do what we call the "silent cry," where you can tell she's crying by looking at her face and body language, but you can't hear anything because of the breathing tube... no bueno :-(.

Enough with the... not ideal news and on to some praises...  They just took out her LA line (it measures the pressure in her left atrium) which is a number that I love to stare at on the monitor, so having that number no longer available will give me one less thing to obsess over and they also removed her chest tubes.  YAY!!!  

What a little angel, huh?

Yesterday, my angel of a Mother in Law face timed us during Abby's soccer game, so that we could watch her play (she scored two goals and blocked the other team from scoring a couples goals too), we are so proud of her!  We were watching the game from the back of Grace's room in the ICU and when Abby scored her first goal, David thought, maybe she can hear us (from across the soccer field on the phone while face timing), so he yelled "good job Abigail!!!" The nurse cracked up and I'm sure all 29 beds in the CVICU now know that Abigail scored a goal.  It was actually pretty cute and funny!  We also got to see Andrew playing in the mud at the soccer game (since they had a huge down pour right before the game started) and it was neat to see him having sooo much fun (when he saw us on facetime he didn't know if he should be happy or cry), please pray that the kids finish our time apart strong.  Another praise is that since Grace will still be intubated over night (and knocked out to avoid her doing alligator spins with her breathing tube in), David and I will get to have one more night of good sleep in the hotel room together and we will be able to go to church together tonight (Calvary Chapel has a church service in our hotel).  

So grateful that our God is sovereign and reigns over all this craziness! :-) 

Saturday, October 12, 2013

Day 1 of the craziness of recovery...

They just did morning rounds and overall they were pleased with how Grace is doing!  I want to stop and praise The Lord for that...  however, the one thing that they are concerned about is that her extremities are very cold, so they are trying to figure out if it is environmental or is it that her heart isn't doing a great job of getting blood out to her arms and legs?  They are drawing labs to get a better idea of the cause as well as giving her fluids and a medication that will help with her circulation (the nurse said 90% of their patients are on this medication post surgery, so it's common).  Now for the scary, hairy part...  they are going to stop the paralytic and start to wake her up, so that she can start to breath on her own, but at the same time try to keep her comfortable.  This is really where our Gracie Doo becomes a mystery (at least in the past, so maybe she's matured out of her crazy ways :-).  In the past it has been SO difficult to wean her off the paralytic and down on the ventilator, but keep her comfortable and happy.  Will you please pray that she blows us all away with how amazingly well she does this transition and that her circulation isn't a problem at all?  It certainly doesn't hurt to ask, right?  And even if the answer is "no" we will praise Him anyway :-).

Once again, the power of prayer has been reflected in the joy and peace we felt when laying eyes on our little angel for the first time after surgery.  I feared that it would be a sad, scary time, but instead it was a joyous time and the only thing that we could comment on was how pink she looked!  Check out this pink little foot (this is the pinkest her tootsy has EVER looked)!  

So, I tried to convince David not to post the picture of Grace right after surgery on facebook yesterday, but he could not be convinced...  He was just so proud of Gracie Doo that he wanted the world to see how tough she is...  even if it makes some people want to honk looking at a baby with tubes and wires all over the place :-).  I apologize if these pictures make anyone uncomfortable, so this is a warning that a post op picture is posted below :-)

Notice she has her little friends proping up her arms...

More updates to come, they are shutting off the paralytic now, so I'm going to run...

Friday, October 11, 2013

T minus one hour until we get to see our little sweetie!

We just spoke with the surgeon and he successfully closed her VSD (hole between the ventricles), took off her pulmonary band and repaired the pulmonary artery that was a bit damaged from the band (that is common), and he was albe to repair her mital valve without having to replace it (yet :-).  He said that he is "satisfied" with the repair of her mitral valve.  Obviously, I would love to hear that he is super duper excited about it (that would be asking a lot, especailly since I have never met a surgeon that talks like that :-), but I'll take "satisfied" and praise The Lord all day and night.  The goal of this repair of her native mitral valve is to buy us as much time as possible before it needs to be replaced.  2 big prayer requests...  Will you please pray that her body handles her new circulation/repair amazingly well and that her mitral valve wouldn't give her any trouble (I know of a number of kids that have had to have the valve replaced just a couple weeks after having their native valve repaired because the child goes downhill shortly after surgery)?  We are beyond excited to go see our sweet Gracie Doo, but it is also one of the hardest parts of this journey, seeing your little angel all beat up after surgery (especially since we handed over a healthy (well, healthy for Grace :-), joyful, smiley little girl just 8 hours ago).  Thank you Village!!!  Now comes the next tough part of this adventure... recovery, but we trust that you will pray us through it and God will be in control :-)

Surgery Update #3

This is David...  Since our last update, Kristi and I were able to venture outside and enjoy a three mile walk in some beautiful weather.  As of our update at 3:00pm, the surgical team had finished up the surgery and had just taken Grace off of bypass.  We don't know the results of what the surgeon did with Grace's mitral valve, yet.  The nurse said that Dr. Pigula, Grace's surgeon, should be out within the next thirty to forty minutes to speak with us.  After we speak with Dr. Pigula, it should only be 30-45 minutes until we are able to see Grace in the CVICU.  Yeah!!!

Next update...

We were waiting for the update that she is now on the heart and lung bypass machine, but they forgot to call with that update, so not only is she already on bypass, but they are in the process of doing the repairs on her heart...  Please continue to pray!  Thank you!


First things first...  Y'all know how to bless and make a girl (and guy :-) feel loved!  Each and every text, phone call, facebook post, and e-mail has been an incredible reminder that we are not in this alone!  Please know that if you don't hear back from me right away, your message has NOT gone unnoticed or unappreciated, in fact the opposite is true, you have made a huge impact on my heart and made this journey that much easier as you bear this burden with us!

We checked in at 6:00 am and they took Grace back at about 7:30 am.  During that hour and a half every nurse, Dr, etc that we encountered loved on Grace and told her how beautiful she was, so Grace was all smiles and waving at everyone. 

They gave her the medicine that makes her drunk, so that the hand off process wasn't painful for her or us.  The medicine worked like a charm and within a few minutes Grace was wasted and we got to see once again what a happy drunk she is :-).  After they took her back, her surgeon, Dr. Pigula, came out to talk to us and it was a great conversation!  He didn't make us feel rushed a bit, answered all of my (many) questions thouroughly and when I told him that we have been/would be praying for him, he didn't look at me like I had 5 heads this time, but instead smiled and said "thank you!"  We got our first update at 9:30 that they had made the incision and we should get our next update around 11:00ish.

David and I have tangibly felt your prayers and God's promises in full effect this morning.  We have marveled at the peace that we have experienced so far, so please, please, please don't stop praying now becaue that peace can be threatened at any moment.  THANK YOU!!! WE LOVE YOU!!!

Thursday, October 10, 2013

It looks like surgery is a GO for tomorrow...

We had our appointment this morning to make sure Grace's funny business won't impede her ability to have surgery tomorrow.  The Dr. said that her lungs sounded crystal clear (praise The Lord), her temperature was 100.1 (they didn't seem concerned about that at all), and they drew blood and said that they would call us if her white count was high (so no news is good news).  We haven't received a phone call yet (it's almost 5:00 pm our time, so we feel good about that!) and we called to confirm our surgery date and time (normal procedure to make sure they didn't have to bump us for another case, etc).  Lord willing, it looks like tomorrow will be the day...  We have to be at the hospital at 6:00 am and we are assuming that surgery will be roughly 6-8 hours.  They usually give us an update about every hour, so I will post updates throughout the day (at least that's my intention :-).

Thank you for praying with us through these uncertain circumstances.  Your prayers have been felt for which we are deeply grateful.  Please pray that it would be the Lord's hands and wisdom making decisions on the best way to mend Gracie's heart.  Please also pray for peace for David and I as we wait.... and continued peace, strength, and joy for Abigail and Andrew, since we are at the half way point of being apart (until I get to snuggle them).  

"Please also pray that it isn't long before my Mommy and Daddy can see my sweet smile again (and lots of them) because I can't really light up the room as well when I'm knocked out"

Love this reminder...  We aren't promised that the journey will be easy, but we are promised that Emanuel (means God with us) will go before us, never leaving nor foresaking us.