Saturday, November 30, 2013

Tears and Trees

This is David - I hope that everyone is enjoying their long weekend!  Staying here in the hospital, I find myself attempting to figure out things to do or ways to not go stir crazy and praying for God to use me if that is His desire.  I try to find adventures in walking circles with Grace around the 8th floor of the hospital.  Usually, I make conversation with the person that I am sharing a room with; however, this hospital stay on "the floor" has been unique.  My first night, my roommates did not speak english, but they were transferred to the CICU the next day, so I thought I was going to enjoy a room to myself, but the nurse came in to tell me that I was going to get a new roommate.  It's kind of weird, I anxiously await the new roomate and know it is going to be a little awkward at first, and I often hope that they will be cool, but mostly I hope and pray that God uses me in some capacity to be a light for Christ to my roommate.   There is little privacy between the roommates, we share a bathroom, the only thing separating us is a thin curtain between the two cribs, and I end up learning everything about the other patient because the nurses and doctors come in and talk about treatment plans, and somehow the sound travels through the sound proof curtains (so much for patient privacy).  I'm not sure what God's plans are this time, or if He wants to use me at all, because my roommates are here from Russia and the little boy's nanny is staying with him and she doesn't speak a word of English.  She enjoys talking to Grace, then she'll tell me something and I will nod my head; sometimes she will bring me her cell phone or iPad and ask me for some sort of technical assistance, but all the writing on her devices is in Russian as well, so I fear that I'm not much assistance; she will bring over her iPad when she's skyping with someone and she will say my name in a very thick Russian accent and show me to the person that she's talking with and I will give an awkward smile and say hi.  Please pray for my roommate Lucia and that if God wants to use me somehow, that He is able to do so and that I am a willing participant, even under these odd circumstances.

A wonderful interruption to the monotony of the day came when Kristi's VP from her division (the same woman who worked so hard to ensure that we were able to get insurance coverage to get a medical flight to Boston) and her husband showed up at the hospital unexpectedly.  They were traveling back home to New York from Maine and were nice enough to stop by the hospital and bring Grace and I some goodies.  I received some much needed hygiene products, snacks, and gift card to Au Bon Pain, while Grace received a new bow and a card and well-crafted Christmas ornament, both made by the niece of Kristi's VP.  Thank you very much for the blessed visit and treats!

It's me-  When I received this picture from David, it gave me a much needed smile!  I love her precious headband (thank you Kristen and Jim!!!), those beautiful eyes and smile remind me of God's faithfulness.  Only He could create such an amazingly resilient little angel.  Grace so freely loves, forgives, and blesses despite ALL that she has been through.  15 months ago, before she was born, I was mortified about what our lives were going to look like raising a child with Up's and major heart defects.  It is hard to type this, but I was less than excited about having a special needs child and there was a point where I thought it would be easier if God took her home before having to endure, what seemed like such a cruel life.  Fast forward 15 months and this journey has been way worse than I even imagined, in terms of circumstances, but way more magnificent that I could have ever dreamed.  I once feared raising a child with Up's, now I'm just so afraid that I won't get to raise my Gracie Doo with Up's.  David and I find great joy in seeing pictures of other kids with Up's, or seeing them in person is even more exciting.  We literally want to say to their parents "We have one too!!!"  (it's such a treasure that it's hard to explain unless you have a special needs child) with the worlds biggest grin or we just hope for a chance to interact with the child or adult with Up's.  Something that I've struggled with lately is that I find myself trying to avoid pictures of children with Up's (specifically on Facebook) because my heart breaks when I think about not getting to see Gracie at some of those precious ages.  I don't know what tomorrow holds, but I know that when I reflect on God's faithfulness to date, I'm reminded that I can trust Him for my tomorrow.  We focus on just taking another joyful step to get through each day and today was no different.  The kids and I spent the day decorating the house and our new little Christmas tree.  We had a great time, but there is no question that David and Grace's absence was certainly felt in a big way.  We took a break from decorating to go get lunch and run a couple errands and when I looked at Abby in the back seat, she was crying.  When I asked her what was wrong, she said, through big tears, "I just really miss Daddy and Gracie!"  Luckily, we were just down the street from our lunch designation, so I could quickly park and share a big hug and good cry with her.  We were able to praise God that we do miss them so much because if we didn't miss them, it would mean that we must not love and enjoy them very much and it will make our reunion that much more special.  

Here is our sweet little Christmas tree…  

Sweet Village, we love, appreciate, and need you!  Will you please continue to cover us in prayer? THANK YOU!!!  (((BIG HUGS))) 

GRACIE STRONG (in God's strength)!!!

Friday, November 29, 2013

Blessed Black Friday

This is David - Things are going well in Boston today!  Thanks to the kindness of some local coworkers of a friend of ours in Texas, I have been enjoying some home cooked food that they brought to me yesterday.  Unfortunately, I think I overdid it and ate a quarter of a key lime pie for lunch today; and, unfortunately, there is a high likelihood that I will do the same for breakfast or lunch tomorrow, it's delicious!

In regards to Grace, she has done a great job today!  She still vomits half of her feedings, so they are going to try a different formula to see if it is related to what she is eating or just a result of her mitral valve.  They also tried to take Grace off her oxygen for a little bit to see how she could handle it and slowly her sats began to drop, so within 10 minutes she was in the low 80's and continuing to go down, so they put her back onto just an eighth of a liter of oxygen and she jumped right back up to between 95-100.  Other than that, there is not much to report from here in Boston.  Grace and I are doing well.  If I stop and dwell too long on the fact that our family is split up, then I start feeling a little I just choose to not dwell on that too much.  I would love to be with Kristi and the kids right now, but that just isn't an option, so it does not seem like it makes a lot of sense to allow our situation to dictate my feelings.  I praise God for His peace, comfort, and strength through this; for it is not from my own will, but by the grace of God.  

No post from Kristi today. She has been busy doing some online Black Friday shopping, but she had to wait until the kids went to bed before she could really get going, so that's what she's doing right now. Grace wants to wish everyone a Happy Black Friday!


Thursday, November 28, 2013

A day full of thanks...

Many praises and thanks this Thanksgiving…

I hope that you guys felt a little extra love coming from The Ross Family this Thanksgiving because all day y'all have been on the hearts and minds of David and I.  We can't help but continuously praise God that so many of you continue to stand in the gap for us in such profound ways, meeting needs that we didn't know we had or wouldn't dare ask for help.  I have shared this with some of you, but the truth is, David and I have a very difficult time asking for help or even accepting help.  Now, I have talked to God a lot about it to try to understand the source of this difficulty.  I've asked "Lord, is there an ounce of pride in my heart that makes it difficult to receive a gift/blessing without felling bad, etc" and the answer so far is no.  It really comes down to, we just don't want to inconvenience anyone because we are well aware that we are all bearing burdens of different kinds (all of which are important and significant to the person going through it, you can't compare burdens) so who are we to be on the receiving end of so many people's thoughtfulness and generosity.  We have always believed that if "God brings you to it, He will bring you through it," therefore, we trust that He has and will provide along this journey and much of His provision has come from y'all blessing us without even asking for permission, so we didn't have to struggle with saying "yes."  You continue to stand in the gap for us, by faithfully lifting us up in prayer, sending encouraging messages, delivering a hot meal at a time when only God knows how bad we could use it, setting up a fundraising mechanism to help fund our Christmas reunion in Boston, contributing financially to our cause, sending care packages, making sure that Abigail and Andrew aren't forgotten about during this holiday season, random hospital visits from new (previously unknown) friends, and so much more…  These acts of kindness have been delivered by many of you who I haven't talked to since high school, dance studio days, college, previous co-workers, neighbors, church family, teachers and families at Abby and Andrew's schools, family members and friends of friends, total strangers, etc.  You and your pure sweetness have brought me to my knees in thanks this Thanksgiving!  By God's grace, I have kept my heart in a place of awe and thankfulness today, trying to focus on the blessings right under my nose (not the big overwhelming picture) and that made for a great Thanksgiving (despite missing David and Grace terribly).  David and Grace also had a good Thanksgiving because Grace had a pretty uneventful day (by Grace's standards) and David was beyond blessed by total strangers (a dear friend of ours who works for NY Life reached out to their Boston branch to see if anyone there would be willing to deliver David food for Thanksgiving and a sweet family jumped at the chance) who brought him an amazing Thanksgiving dinner (including a whole pie :-) that is enough to feed him for the next couple of days.  Can you believe that?!?!?  Oh, how I wish I could hug their necks right now because you know how it goes…  if you bless my man and baby girl, you inevitably bless me too :-).

God also showed up today in other big and small ways…  Abigail, Andrew and I had a great Thanksgiving with family, despite missing David and Grace terribly.

Another smaller, but still super sweet blessing today came from David (being the World's best Daddy that he is), who all on his own, bought detangler from the CVS inside the hospital and took care of Grace's rats nest in the back of her hair.  

I didn't mean for this post to get so long, but I couldn't help but try to convey just how much we love and appreciate you on this special day of Thanks!  Here is Gracie's hug of thanks for you…

Wednesday, November 27, 2013

Mascara or no mascara?!?!

Today was pretty uneventful for Grace...up until this afternoon.  For most of the day, Grace slept, ate, vomitted half of what she ate, played, and went back to sleep.  She was doing pretty good on just half a liter of oxygen, so the nurse got a new attachment for the oxygen and weaned Grace down to a quarter of a liter.  Grace fell asleep and within 15 minutes Grace's oxygen saturations were in the 70's (the goal is 100%).  At one point, Grace decided to desat, which means her saturations were in the 60's.  The nurse gave Grace some physical therapy, which means that she beats on her back to try and loosen anything up in her lungs, but that did not help to bring it up.  She raised the amount of oxygen she was on to two liters, but still nothing changed.  The nurse practitioner had us go down to get an X-Ray, to see if Grace's lungs were filled with fluid, but her X-Ray looked great (even better than yesterday).  We get back to the room and hook Grace back up to the monitors and her saturations were still in the 70's.  The nurse called in the charge nurse to have her help troubleshoot.  The charge nurse recommended for the nurse to make sure the oxygen from the wall was flowing properly....well, problem solved.  It turns out the oxygen was not tightened all the way to the wall, so once the oxygen was working properly, Grace was back to 95-100%.  Well, I guess one thing we learned from this is that Grace needs oxygen, even if it is just half a liter.  Hopefully, this is just one more piece of information for the doctors to get closer to making a decision.  Grace is scheduled to get another echo on Tuesday, so until then Grace and I will just be partying on the step-down unit.  I hope and pray that everyone has a great Thanksgiving tomorrow!

I'm back - So, I start each morning, by asking myself a very important question as I'm getting ready…  "Is it safe to put mascara on today?" Some day's I'm wise and make a good choice, but others not so much. Yesterday, I made a bad call and put on mascara, but boo hoo'd it right off (in the beginning of the day) because I so badly wanted to make Andrew's birthday so great that he wouldn't have even known that his daddy and baby sissy were missing.  Wouldn't you know that he had a GREAT day (praise the Lord) and it was me that was overwhelmed with my "to do list" and missing the other half of Team Duck's terribly.  I've learned that I'm like the kids, FaceTime always sounds like a great idea, but it is more painful than we could have imagined.  I love seeing Grace on FaceTime because it helps so much to see her preciousness in person.  It serves as a reminder that she is still alive and well (… "well" being a relative term :-)…

Check out this sweetness!  One of the nurses gave Grace a Cinderella balloon, that I love seeing her play with, however, my favorite part of this video is that she let go of the balloon to wave to her Mommy.  Be still my heart, be still...

but on the other hand, seeing David on FaceTime… takes me days to recover from :-(.  I assumed that today would be a no mascara kind of day because I decided that this evening the kids and I would go get a small Christmas tree and some new decorations (for our little tree) to put up this weekend.  Our normal family tradition is to put up our Christmas tree and decorate the house the weekend after Thanksgiving.  It just doesn't feel right to pull out our huge Christmas tree and zillion ornaments because this Christmas is not "normal," and it is also a major operation to make all of that happen without David here.  However, it doesn't feel right to start a new tradition, by getting a new small Christmas tree with some new ornaments either... After some prayer and talking to the kids about it, we were all on board and excited about getting a new "special tree" that we decided to decorate in "Up's" colors (blue and yellow are the Downs Syndrome awareness colors) to celebrate our Gracie Doo!!!  I will let you know how it turns out :-).

We have SO VERY MUCH to be grateful for this Thanksgiving, it's hard to even know where to start! I think I'm going to have to copy my 6 year old as to the top 4 things that I'm thankful for because she nailed it :-).

This sheet of paper came home in Abigail's school folder yesterday…
I know it's kind of hard to read because of the glare, so I will translate and add Abigail (and Andrew's) description behind what she wrote (per our discussion last night):

1) God-  "that God is always with us no matter what and we can trust Him"
2) Jesus- "that Jesus died on the cross for our sins and that we will get to live with God in heaven, forever"
3) Family- "that God gave me the best family ever and I love them so much"
4) My little sister, Gracie- "that God made her so strong and I love her so much.  I'm also grateful for the Dr's and nurses in Boston that know how to take care of our Gracie"

And I would have to add, I'm thankful for the most phenomenal Village in the World!!! 

Abigail's list captured much of my thanks, however, there are so many life giving/life changing lessons that have come out of (and continue to be refined in) this HOT, HOT, HOT fire in which we are currently living.  There is no question that these lessons can only be learned in the fire, so we are thankful for the fire, but even more thankful that we can walk through this fire and trust that we won't be burned because no matter how hot this earthly fire gets, our ultimate fate is sealed.  Like Abby and Andrew said, "we will get to live in heaven with God FOREVER" because we know that we are sinners in need of a Savior and have therefore accepted His free gift of salvation.  Clearly, our Gracie Doo hasn't made this profession of faith and she may or may not have the ability to do so, but we believe based on various verses in scripture that Gracie will also spend eternity in Heaven, for which we rejoice. It is the hope of eternity that gets us through each day, with or without mascara :-).  I selfishly pray this Thanksgiving that we get to spend decades with our Gracie Doo before she departs for her heavenly destination, but the truth is that tomorrow isn't promised for any of us (not just those fighting for their lives in the hospital), so despite how we may feel, let's "give thanks in all circumstances; for this is God’s will for you in Christ Jesus." 1 Thessalonians 5:18

I pray that each of you has a HAPPY THANKSGIVING tomorrow!!! XOXO

Tuesday, November 26, 2013

Happy 5th Birthday Andrew!

Happy 5th Birthday, Andrew!  Grace and I sure did miss a fun birthday party for Andrew today,

but Grace had some excitement of her own today (in a good way).  Grace was moved from the CICU over to their step down unit, "the floor."  Grace has been her happy little self today.  The only things to keep an eye on are that when Grace gets fussy, her hands, feet, and lips all turn blue.  From March to October, Grace had a gradient on her mitral valve of 15-19, but she never turned blue when she fussed; however, when she fusses now, even with a lower gradient, she turns blue.  I have told this to the cardiologist and nurses and they stated that is good information to know.  Also, in speaking with Grace's cardiologist this morning, I stated my fears of the doctors placing a lot of emphasis on Grace's clinical appearance when making their decision, since Grace has shown us already that clinically she stays happy right up until the last moment and all of a sudden she is having the crash cart called on her.  Dr. Marx stated that he understood our concerns and he wanted me to know that they will definitely not be sending Grace home to Texas unless she is looking perfect and they can be close to certain that we won't get home and go through the same experience with Grace that we did before.  That was very relieving to hear that he understands our concern and is in agreement with what Grace needs to prove in order to go home without a valve replacement.

Tonight you are stuck with just me, David, writing on the blog post.  Kristi has not had a down moment since she returned home to Texas and with all of the plans and details going into providing Andrew with a great birthday party today (given that he doesn't have his dad and baby sister home with him for his birthday), all of this craziness is catching up to her and she is getting pretty worn down.  I have never felt a greater desire to be able to take some things off of Kristi's plate and care for her, so being unable to do that is a very helpless feeling.  However, we know that God has brought us to this place for a purpose and we will do our best to glorify Him with our lives to the best of our abilities.  Thank you, Lord, that we even have the option and opportunity to praise You, for You alone are to be glorified and it is a blessing that You allow us the ability to give You glory.

Here are a couple of pictures Kristi sent me from Andrew's Pizza Making birthday party.

Have a great night, Village!  As always, thank you for your prayers and encouragement!

Monday, November 25, 2013

And the plan is…. to wait some more

This is David - Thank you for praying for Grace's echo today.  The pressures in the right side of her heart are high and the gradient across her mitral valve was between 14-18.  Grace remained consistent and it took a lot of sedation to knock her out.  So the gradient was 18 when she was sleepy, but still wiggling and needing to be restrained a little bit.  After an hour, and lots of extra doses of sedation, Grace finally knocked out and her gradient was down to 14.  The last echo that Grace had was roughly 9 or 10 days ago and her gradient was between 11-13, so it has certainly gone up.  Our cardiologist, Dr. Marx, stated that in his discussion with our surgeon, Dr. Pigula, they sort of had differing opinions as to what should be the next step.  Basically, Dr. Marx feels like her valve is demonstrating that it needs to be replaced and Dr. Pigula would like to wait another week and reassess to see if they can control her heart rate with medication and then see if her gradient will stay lower with a lower heart rate.  A big part of Dr. Pigula's reasoning is based upon how Grace has looked clinically over the last 3 or 4 days.  Grace has made major improvements and when Dr. Pigula came to see her this morning she was sitting up in the crib on her own and smiling and waving at people, she was not on any oxygen, she was almost completely off all of her sedation, and she has been eating by mouth.  Believe me, we want Grace to be doing well clinically, but the difficulty is that Grace tends to do well clinically up until the last minute.  Even when we were in Texas, after Grace had been admitted to the hospital, she had been smiling and waving at the attending doctor fifteen minutes prior to turning blue and having the crash cart pulled out for her.  It seems to us like the direction is obvious, but we have been praying for God to guide the doctors in their decision making and we trust that everything is working out according to His plan.  In the process of waiting until next week for another echo and further steps on this path, will you pray that if Grace needs to have a valve replacement that it will be obvious to the doctor's (but without Grace having to go through any major trauma in the process); or, if she can make it on her valve for a little while before needing to have it replaced (non-emergently), please pray that it will be apparent and that God will help align our hearts with His will.  Thank you for your continued prayers and support!  We love y'all!
I'm baaaaaaaack :-)

It's me-  In all honesty, today has been rough for me…  when I got David's text about Grace's gradient across her mitral valve being higher than before (and it was already considered high last time when it was 11-13), I felt deflated because we have invested 2 weeks of recovery and hope that this valve might work.  Her personality has just started to shine through today (scrunched nose smiles, waving, clapping and drawing everyone in with her sweetness)…
And, she just got the staples in her chest out today, so the thought that they might have to open her right back up, makes me cry as I type this because it feels so barbaric.  However, the last thing that I want to do is bring her home (to Texas) with an unreliable valve and fear another crash cart experience, so that's why our preference has been to replace it.  The reality is, we are at a fork in the road and whichever direction God leads us at this point, there will be the temptation for fear, doubt, and heartache to lurk around every corner.  Therefore, I will hold on to God's promises for dear life because this fire is HOT… 11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

It's hard to imagine celebrating Andrew's birthday tomorrow without David and Grace here, so I can only imagine what Thanksgiving will be like, but in God's strength we will choose joy and gratitude because we have SO VERY much to be thankful for!  For instance, God has used so many of you to remind me/us that we aren't alone in this fight.  You have also allowed me to get excited about the hope that our family will be reunited for a special Christmas in Boston!  I can't even imagine what it will look like with all of the logistics and uncertainty between now and then, but all that matters is that (Lord willing) we will be TOGETHER to celebrate the birth of our Lord and Savior, Jesus Christ!  The only reason for the season :-).  To each and every one of you that is praying for us and that has made it their mission to get Grace back to Boston, to make the holidays special, less lonely, and as stress free as possible, we are eternally grateful and don't take an ounce of your kindness for granted.                 

(((BIG HUGS)) with complementary tears and snot on your shoulder :-).

Sunday, November 24, 2013

"Take another step…"

This is David- Happy Sunday, Everyone!  I have always loved going to church, but having to have missed church for such a long period of time has caused me to love church even more.  Sure, while I am here in the hospital I can easily listen to sermons online and have worship music on my phone and iPad, but that in no way counts as a proper substitute for church.  What I miss most is being a part of a community of believers, unified in worship and prayer.  It is a vital part of being a Christian and I miss that component dearly.  But I rejoice in the hope that one day Grace and I will be back at church again, worshipping our Triune God in the midst of a body of believers who are doing the same thing.

In regards to Grace, she has had some steps forward and steps back today, but thankfully the steps back were very small and not tumbles.  On a positive note, Grace was able to begin eating by mouth again today, to which she has taken off and done really well with, finishing each bottle as quickly as she can.  Also, Grace got to actually venture out of her room for a little bit and go for a ride around the CICU.

She had a great time and even stopped to greet lots of different nurses that she has had since she has been in the hospital.  They all commented on how beautiful she was and how happy they were to see her without all of the tubes on her face.  Unfortunately, when we got back to the room, Grace's oxygen saturations began dropping into the 80's, so she had to get the nasal canulas back on for the rest of the day (which half the time they were in her nose and half the time they were in her mouth).  This is not a major setback though, as it relates to what is going on with her treatment at this time.  As we shared, part of Grace's treatment has been to begin weaning a lot of her diuretics to see how she will do and because her kidney numbers have been really high, since she has been dried out so much. Thus, yesterday they stopped giving two of her diuretics, so she was only getting one diuretic.  This morning, her chest X-Ray was a little more cloudy than it had been, which is why her oxygen saturations eventually started dropping a little bit.  Therefore, this either demonstrates that Grace was just weaned from diuretics too quickly and she still needs them at this time or it means that her left pressures are getting higher and are backing up into her lungs and before the amount of diuretics she was on was masking the fluid backup.  Thankfully, Grace will be getting an echo tomorrow or Tuesday, so that should give a better idea if there is anything going on in her heart.

My turn- Here is what has been on my/our hearts lately… The turn of events over the past month, from Grace getting discharged in record time, just to crash 5 days later, spending a week in the ICU being told that there is little hope for our baby to survive and that we shouldn't have made the decision that we did to go to Boston, being life flighted back to Boston, and the roller coaster that we continue to ride can seem so cruel to some and it's easy to wonder why God would allow such "suffering," but David and I have continued to remain confident that it isn't "for not." God isn't just messing with us to watch us squirm, but instead we trust that He is doing a mighty work that we may never understand on this side of heaven, but we know that He will be glorified and we will continue to be refined by the fire. There is no question that the fire is HOT, but He is GOOD! We have also said that if all of this craziness casues just one person to draw closer to the Lord and learn to lean into Him during their times of trial, then it is worth it. Our faith gives us great hope, but this journey is still filled with a ton of uncertainty which can be a breading ground for fear, so we continue to "take another step" (like the lyrics to another one of our favorite Steven Curtis Chapman songs) and ask for your prayers...

Then the lightning flashed the thunder crashed

And suddenly
It began to rain and everybody ran
Then the sky went black as midnight
And you couldn’t see
Paralyzed by what you just can’t understand
And now here you are
You’re afraid to move
You don’t know where to go
You don’t know what to do

Take another step, take another step
When the road ahead is dark
And you don’t know where to go
Take another step, take another step
Trust God and take another step
And another step and another step
Take another step and another step and another step

We walk by faith and not by sight we know it’s true
We say it and sing it and love the way it sounds
But none of us can even begin to truly understand
What it really means ‘til all the lights go out
And there we are nothing to hold on to
But the promises God’s made to me and you

Take another step, take another step
When the road ahead is dark
And you don’t know where to go
Take another step, take another step
Trust God and take another step

If there’s an ocean in front of you
You know what you’ve gotta do
Take another step and another step
Maybe He’ll turn the water into land
And maybe He’ll take your hand and say
Let’s take a walk on the waves
Will you trust Me either way
And take another step
Take another step

Grace's echo tomorrow or Tuesday is the next big step toward God's will being revealed (another surgery to replace the mitral valve or continue to ride her native valve out and hope it does't cause her to crash again). Will you please pray that the echo results would make God's will abundantly clear to her team of Dr's (especially her Surgeon) and that He would align our (Abby and Andrew included :-) hearts and minds with His will? I know that this prayer request may sound redundant, but it is truly our greatest need at this time. Thank you, sweet Village!!! As always, we continue to pray and praise God for you!!!

OH DEAR!…  How could I almost forget a praise report?!?!  We got to face time with David and Grace today and Grace gave me a number of sympathy smiles (I'll take 'em)!  David said that Grace still isn't back to her old self yet (because she's still being weaned off of sedation meds, etc), so she's not freely giving smiles, but when I was talking to her, she gave me a number of sweet, scrunched nose smiles!  I'm sure she was thinking "I better make it look like I'm smiling because this crazy momma of mine is working way to hard for them!"

Also, Christmas came early for Abigail and Andrew (and me too!)…  A dear friend and the best decorator ever (let me know if you are in need of a decorator and live in the Houston area :-) delivered the sweetest treats to us today.  Do these kids look happy or what?!?!


Saturday, November 23, 2013

I'm fresh out of creative titles, sorry :-)

David here- Nothing but good news for Grace today.  Praise the Lord!  She started off the morning with nasal canulas, but by noon she had them removed!!!  Another bonus, if you are in the mood for hearing this, is that Grace had not pooped since last Saturday and between yesterday afternoon and today she had five dirty diapers, all of which christened her sheets too.  The nurses called it a code brown.  Other than that, there wasn't much new for Grace today.  She is slowly coming out of her sedation haze and becoming a little more like herself.  We are very interested in seeing how Grace's heart looks on the echo on Monday or Tuesday.  The plan has been to keep cutting back on her diuretics, so that a realistic picture of Grace's heart can be seen and not just one that appears good because she is dried out.  Please continue to pray.  I would state specifically what our prayer request might be, but to be honest, I don't really have a clue what I want it to be.  I don't know if it is best for her to get a valve replacement now or if we want her valve to look great and we can go home now.  Whatever is God's will for Grace's life and body is what I desire to happen.  This is a very comforting place to be.

 Sweet Sleepy Doo with no nasal canulas for oxygen!

Sleepy Doo snuggling with her new friend!

Wishing I could get in on some of those snuggles!!!  Look, you can see her oxygen saturation on the monitor in the background, 96%! I'll take it and praise God for it!

My turn- I spent a good part of the day trying to prepare for the holidays…  trying to figure out Andrew's birthday party (which is suppose to take place in 3 days :-/), cleaning out the garage to make room for Christmas decorations that needed to come out of the attic, digging out the Christmas lights, etc and while it felt good to be productive, it also made me miss David in a big way because those are all tasks that he usually does (except planning birthday parties :-).  It got me thinking about what our fun family holiday traditions are going to look like with half of Team Ducks, 2,000 miles away (in the flesh, but not in spirit). It is during those moments of uncertainty that God uses His people to remind us that He sees, hears, cares and He provides, whether it is in the form of a hot meal when you need it most, muscles to get heavy boxes down from the attic, a perfectly worded card, a contribution toward reuniting our family for Christmas, a sweet visit from a neighbor, a last minute dinner gathering with dear friends, etc.  Thank you for being the hands and feet of Jesus, sweet Village!

Friday, November 22, 2013

Never a dull moment...

David again, Grace has had a great day today, not just medically, but socially as well.  Grace had three visitors come by the hospital today, the mother and sisiter-in-law of the VP of Kristi's division at work, Mrs. Sharron and Michelle, and a great friend who was the best man in our wedding, Ian Gruca.  Grace got a new stuffed animal and doll from them and their generosity poured out on to me as well, with some wonderful snacks, books, and a gift card to Au Bon Pain (one of the few food places in the hospital).  It was such a blessing for me to have visitors.  I praise God that most days are not too difficult and lonely for me, but there are certainly times when I feel the separation from the family.  Thankfully, the difficulty was made much less apparent today by being blessed with a visit from our friends.  Thanks, Mrs. Sharron, Michelle, and Ian!

In regards to Grace's day medically, she continues to greatly improve.  Today Grace had her pacing wires, chest tube, and right atrial pressure line removed from inside of her chest, which she handled like a champ.  The nurse today (this was this nurse's first time having Grace) gave her some sedation before the removal, but little did she know that Grace was just going to laugh at the sedation she received, so the nurse gave Grace a little more sedation, to which Grace continued to not be phased by, therefore, she went forward with the procedure and had to have another nurse come in to hold Grace still.  They have also continued to wean the amount of oxygen Grace is receiving, so she is now on only 2 liters.  The plan for the weekend is to lessen the amount of diuretics Grace is getting because she is too dried out right now, which is causing her kidney numbers to be too high, but also it doesn't give an accurate picture of how her heart will look without all of the diuretics.  So, hopefully Grace will do well with the changes over the weekend and then she will have an echo done on Monday to see how the gradient on her mitral valve looks.  Please continue praising God with us and praying for His will to be apparent to the doctors as they continue treating our little Gracie.

Tag…  I'm it-  I am one exhausted momma, so this is going to be a short and sweet post (if I'm actually capable of that :-) ).  Let's just say that there is never a dull moment in the lives of the Ross' as we continue to acquire stamps on our imaginary punch card…  Remember, I'm trying to get someone to buy into my idea of a punch card for the Cardiology Department at TCH because, not only does Grace visit them frequently, but Abigail and Andrew are now both followed by them.  My newest punch card petition is for ER visits.  Andrew has now earned his 3rd stamp for ER visits in the past year or so.  I got a call from my Mother in Love this afternoon while I was at work.  She calmly told me that Andrew was alright, but he hit his forehead on the TV and probably needed stitches, so she asked where I wanted her to take him.

On a side note, I haven't mentioned my Mother in Love too much lately, but she has been my wing woman through the craziness of this journey and has executed her job flawlessly (running car pools, cooking, cleaning, doing laundry, home work with Abby, grocery shopping, and making sure that I don't forget anything).  Let's just say that I would be lost without her!!!

I could hear Andrew crying because he was scared in the background, so I asked to talk to him.  I tried to reassure him that he was going to be just fine and that I was going to meet him at the ER.  He asked me to pray with him (his sweetness and dependence on the Lord during his time of fear brought tears to my eyes), so once again I got to look like a looney toon, walking through the Medical Center (where I work) to my car, praying out loud with tears in my eyes. I knew that he was going to be fine (they are just stitches, not heart surgery :-), I just hated that I couldn't be there sooner to comfort him and the whole stitches/staple thing is usually David's job because I'm weak, so it made me miss my man a whole lot.  I prayed the whole way to the hospital that the laceration wouldn't be that bad, that Andrew would feel God's peace and comfort all around him, and that God would give him  (AND ME) supernatural strength to endure the many stitches that he would likely need.  The answer to those prayers were 2 out of 3!  I'll take it!!!  It WAS that bad…

This is 9 stitches later, but if you are interested in the before picture, you can scroll to the very bottom of this post.  I want to be sensitive to those of you that don't like to look at bloody pictures :-).

God said "yes" to the two requests that matter most…  I know that Andrew felt God's peace and comfort because he was his sweet self when I arrived to the ER and not upset about what he knew was to come.  God also provided him with supernatural strength, in that even the Dr that sewed him up said that he was honestly the toughest patient she has ever had.  They were blown away by how peaceful he was (after getting the numbing shot injected directly into and all around the wound that is :-) .  I must not have done too bad myself because when I was putting Andrew to bed tonight, we were reflecting on how God answered our prayers and I told him how proud I am of him for being so tough and he said "you were tough too Mommy!  I'm proud of you!"

 Now for the bad news…  Andrew was suppose to have his 5th birthday party this Tuesday evening (on his actual birthday) at a bounce house type place ( it has obstacle courses, boxing with giant gloves, huge basket ball and net, etc) and the Dr said that he could not do any bouncing (because it always includes kids running into each other and lots of falling down) or anything else that would put him at risk for busting his sutures.  That means that I have to find an alternate birthday party solution ASAP and try to convince the bounce house place not to keep our deposit….  So, the craziness continues, but the good news is that God is still on His throne and His mercies are new every morning!  Just a friendly reminder, not to scroll any further if you don't want to see Andrew's gash.

WE LOVE AND APPRECIATE YOU, SWEET VILLAGE!!!  Please keep the prayer coming :-)

GRACIE STRONG (in God's strength)!!!

This picture really doesn't even do it justice because the blood doesn't allow you to see just how deep the gash really was...

Thursday, November 21, 2013

I'm really liking this tag team thing...

This is David- We hope that everyone had a great day today, at least we know that Grace did.  Grace had the nasal canulas put on last night, which she is able to tolerate much better.  She got pretty feisty and twitchy last night from her withdrawals, so they went back up on some of the sedation that they had tried to wean her on, but they started over again this morning and she has been able to come off of more sedation with less agitation (she is still getting regular doses of adivan and methadone).  She began the morning with being on 7 liters of oxygen in the hi-flow nasal canulas and is now on only 4 liters, so they will probably be able to transition to low-flow canulas in the morning.  Even though there has been a lot of changes for Grace, all of her numbers (blood pressure, heart rate, oxygen saturations, atrial pressures) are still doing well.  The only negative development for Grace is that she has developed a fever of 102 that has stayed the same all day, even though they are giving her tylenol pretty regularly.  They took blood and urine cultures on her today to see if there is any infections brewing.  Please pray that the fever is just related to withdrawals or a non-issue and not due to an infection.  Thank you for always praying for us.  We can't imagine going through this experience without all of the thoughts and prayers of everyone!

"Look Village, no mask!!!  I'm just trying to ditch these heavy narcotics that I've been on and it's rough, but I'm tough!!!"

I (Kristi) am fighting the temptation to edit David's above post because it sounds so "optimistic" and that makes me a little anxious.  We know all to well that "the wheels can fall off" in a matter of seconds, so the fact that things are going well right now, doesn't guarantee that by the time I hit "publish," the situation will not have take a drastic turn.  I will fight the temptation to think that things can't possibly go good (especially for a couple days in a row) and instead choose to praise God for the blessings and answer to prayer that is right before my eyes.  After all the bible says "Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble." Even more convicting and applicable, the bible also says "And which of you by being anxious can add a single hour to his span of life?"… and I would add, or add a single hour to sweet Gracie Doo's span of life? So instead, I will focus on

I have a sort of funny story for you…  There have been times that I have cried out to the Lord, while soaking the arm of David's shirt with my tears during a tight embrace, because the uncertainty and fear of losing Grace was almost too much to bear and I couldn't understand why we "couldn't catch a break."  It is during those times that God has used David to remind me of some powerful verses that were spoken to Job as he walked through a storm of suffering that is hard to even fathom…  

Now, I know this is a long quote, but please at least read the first paragraph or two, so that you get the picture (it will be very helpful in the story that follows :-).

***this is from the Message Bible (I just love this interpretation)...

Where were you when I created the earth?
    Tell me, since you know so much!
Who decided on its size? Certainly you’ll know that!
    Who came up with the blueprints and measurements?
How was its foundation poured,
    and who set the cornerstone,
While the morning stars sang in chorus
    and all the angels shouted praise?
And who took charge of the ocean
    when it gushed forth like a baby from the womb?
That was me! I wrapped it in soft clouds,
    and tucked it in safely at night.
Then I made a playpen for it,
    a strong playpen so it couldn’t run loose,
And said, ‘Stay here, this is your place.
    Your wild tantrums are confined to this place.’
12-15 “And have you ever ordered Morning, ‘Get up!’
    told Dawn, ‘Get to work!’
So you could seize Earth like a blanket
    and shake out the wicked like cockroaches?
As the sun brings everything to light,
    brings out all the colors and shapes,
The cover of darkness is snatched from the wicked—
    they’re caught in the very act!
16-18 “Have you ever gotten to the true bottom of things,
    explored the labyrinthine caves of deep ocean?
Do you know the first thing about death?
    Do you have one clue regarding death’s dark mysteries?
And do you have any idea how large this earth is?
    Speak up if you have even the beginning of an answer.
19-21 “Do you know where Light comes from
    and where Darkness lives
So you can take them by the hand
    and lead them home when they get lost?
Why, of course you know that.
    You’ve known them all your life,
    grown up in the same neighborhood with them!
22-30 “Have you ever traveled to where snow is made,
    seen the vault where hail is stockpiled,
The arsenals of hail and snow that I keep in readiness
    for times of trouble and battle and war?
Can you find your way to where lightning is launched,
    or to the place from which the wind blows?
Who do you suppose carves canyons
    for the downpours of rain, and charts
    the route of thunderstorms
That bring water to unvisited fields,
    deserts no one ever lays eyes on,
Drenching the useless wastelands
    so they’re carpeted with wildflowers and grass?
And who do you think is the father of rain and dew,
    the mother of ice and frost?
You don’t for a minute imagine
    these marvels of weather just happen, do you?
31-33 “Can you catch the eye of the beautiful Pleiades sisters,
    or distract Orion from his hunt?
Can you get Venus to look your way,
    or get the Great Bear and her cubs to come out and play?
Do you know the first thing about the sky’s constellations
    and how they affect things on Earth?
34-35 “Can you get the attention of the clouds,
    and commission a shower of rain?
Can you take charge of the lightning bolts
    and have them report to you for orders?

The last time that David reminded me of this verse was last week (when I was with him and Grace in Boston) and it seemed like once AGAIN "the wheels were falling off."  We were already suffering from extreme sleep deprivation and it was now the middle of the night, as we we stood by Grace's crib in the ICU.  She had electrodes all over her head, her numbers were all out of whack, I could barely find a bare area of skin for me to kiss her, when I turned to David and said "WHY is God allowing all of this?  Haven't we suffered enough?"  It was at that moment that David with great peace, but exuding sheer exhaustion said " God wants to ask you…  Were you there when I created the world?… Where you there when I created the… whales and gave them their fins… or created the ocean and… gave it bubbles?"  Cue, hysterical laughter!!!  The poor guy was so exhausted that he couldn't finish the verse, so he just made it up and it was perfect!  David met my need of being reminded that we don't always understand what God is up to (after all how could we comprehend the ways of an all powerful, all knowing God), but one thing we do know is that He is good.  God also used David in that moment by causing extreme laughter, which is one of my favorite things to do in life! 

Please keep the prayers coming sweet Village!  You can trust that they are being heard or felt!

Wednesday, November 20, 2013

Tag team, back again...

David again- Good evening, Village!  Grace has had a great day, which was very surprising after her having a not so great night.  Last night (after we published the blog post), Grace's blood pressure was really low and her heart rate was really high.  They attempted to transition Grace from Bipap to Cpap, but her respiratory rate increased a lot and her oxygen saturations went down, so they had to put her back on Bipap.  Grace decided that it would be a good night to spike a fever of 102 and she also decided to stop peeing very much, even though they have her on the maximum dose of lasiks.  However, by mid morning Grace was acting like nothing had happened at all and she began peeing a lot, she was weaned onto Cpap again and has done great on it all day long and will potentially be able to get her big scuba mask off tonight (or tomorrow) and transition to the nasal canulas.  She has also done a great job of coming off of some of her sedations, to where she really has minimal sedation right now (minimal for Grace that is).  This child perplexes us, but praise God that she has done so well today.  Last night I fell asleep around 2:00 am thinking that Grace was certainly demonstrating to the ICU team that she is not going to be able to make it without a valve replacement and today she decides to blow everyone away and do awesome.  Only God can make things this exciting!

Since Grace didn't really get to dress up for Halloween this year (it came and went while she was knocked out and intubated), she decided to be a fire fighter with her new mask today!  

This is Kristi- We've embraced the reality that David and Grace will most likely still be in Boston for Christmas, so we are planning to have Christmas as a family in Boston this year (Lord willing of course).  I don't have a clue how it is all going to work out, but one thing is for sure, TEAM DUCKS needs a reunion in a big way!  I can't think of a better way to celebrate the birth of our Lord and Savior, the Hope of the world and the source of where we draw every ounce of strength, hope, peace, and joy!  Will you please continue to pray for the healing of Grace's heart and lungs (many more great days), God's will to be clear to her team of Dr's, and the alignment of our hearts and minds with His will? We are quickly learning that being split up as a family is hard, but being split up during the holidays (our favorite time of the year) is that much harder, so we covet your prayers during this time!  We praise God for each of you, today and everyday, sweet Village!  Thank you!!!

GRACIE STRONG (in God' strength)!

Tuesday, November 19, 2013

Tag team post...

This is David, I realized that I gave Kristi the wrong information yesterday. Grace is currently on bipap, not cpap.  The goal for Grace today was to continue weaning her on her oxygen and pressure support for her lungs, with the hopes of transitioning her to cpap today. However, Grace's lungs looked a little wet on her X-ray this morning, so they did another one this afternoon and they were the same, if not even a little more wet; therefore, they want to hold off on going down on her pressure support until they see if they can get some more fluid off of her.  Otherwise, if they wean her too quickly from the pressure support, while she has extra fluid on her lungs, then she will end up "failing" and need to be reintubated, which they don't want to happen because they tried to move her along too quickly.

Daddy did a great job making that bipap machine look fashionable!

This is a tag team blog post :-).  I (Kristi) just have to share a couple of things that I'm grateful for today…

-We are so very grateful for the nursing staff at BCH!!!  Their level of professionalism, knowledge, and genuine care for their patients (and their family) is unbelievable!  Here is one small example of their incredible competence: Yesterday Grace's blood pressure dropped to 40/20 (yep, you read that right… super scary), David said that the nurse calmly and proficiently began snapping open about 6 larger syringes of fluid, one after another, infusing them as quickly as possible in an effort to get her blood pressure back up by giving her fluid back (since they had dried her out so much, trying to get as much fluid off of her lungs as possible), while simultaneously calling the attending and fellow (on the phone/walky talky thing) to get them to come to the bedside so they could come up with a plan on how to proceed.  David said that unless he was watching the monitor and knew what her numbers looked like, he never would have known that they were in what could be a crisis situation.  These same amazingly competent nurses are also the ones that will go through so much trouble to make sure that Grace gets the hospitals version of a spa treatment (washed hair and style, lip exfoliation and lip balm, new bedding, etc) and lots of extra loves (hugs, encouraging words, etc).  As if that's not enough, they are our biggest advocates, always working to make sure that all of our needs and concerns are heard and addressed (even if it means pestering Dr's, etc).  All I can say is that pediatric nurses and Dr.'s have such a special calling in life!  I love them and praise God for them!!!

-The grace and forgiveness that children extend so freely!  I almost had to turn in my tooth fairy wings this morning…  Abigail lost her tooth yesterday at school, so she put it under her pillow and due to extreme air traffic and high winds the tooth fairy wasn't able to make her delivery.  Therefore, my heart crumbled when Abigail walked into my room this morning with her tooth still in the bag she had put under her pillow and tears in her eyes. Now for the good news, Abigail already knew who the real tooth fairy is (her mommy) and so it was a chance for her to be reminded that we all make mistakes (even mommy's and daddy's) and practice extending her mommy grace and forgiveness (as I practice trying to forgive myself).  I love that she went on to speak truth to me tonight when I shared that my "worst" was being a bad tooth fairy and letting her down.  She giggled and said  "it's ok Mommy, just remember what you always tell me, God's mercies are new every morning, so we get to start over fresh each day."  The second part to the good news, is that our new rule is that if the tooth fairy doesn't show up on the first night, then you get double the treasure on the second night :-).  Here is what the tooth fairy brought Abigail, along with money and super cute nail decals (thank you Summer!)…

Please keep praying, sweet Village!  Will you please pray for what ever God puts on your heart ?!?!
(((BIG GIANT HUGES))) and thanks!