Boston or bust...

Boston called yesterday and we are scheduled for surgery on March 6th (Lord willing of course ;-)!  We have pre-op appointments on Monday the 4th, a sedated echo and MRI on the 5th, and the surgery on the 6th.  It actually feels "real" now, since we have dates!  My sweet prayer warriors, we really need your prayerful support as we embark on this exciting and hairy journey.  At this point, David, myself, and Grace will go out to Boston together on Sunday, March 3rd and I will return home on Saturday, March 9th (while David and Grace stay in Boston).  There is no way to know how long Grace will be in the hospital (it all depends on how quickly she recovers from major open heart surgery, if there are any complications, etc).  She could be there as little as 2 weeks to 6 + weeks.  We are planning and assuming that it will be closer to 6 weeks, just so we are prepared (as much as you can be prepared for something you are clueless about and have no control over :-).  While I know that this journey will not be easy for anyone in our family, God has already shown up in so many ways, reminding us that He is in control and He has got this!  Just one example of that is how he has used a sweet friend and her sweet sister (who I hardly know) to remind us that He sees and He hears us when we call.  I was praying, asking God for peace and wisdom about how we would manage all of the logistics as it relates to our trip to Boston, and on my heart at the time was a deep desire for David and Grace to be able to take a non-stop flight to Boston for safety reasons (there is always a concern with pressure change, so being able to go up and down just once, instead of twice, and the risk of infection as it relates to being on two separate airplanes and in another airport for a layover, etc); however, the only airline miles I was aware of us having were with Southwest (which is certainly our favorite airline, but they don't go to Boston non-stop)...  long story short, God used our sweet friend and her sweet sister to cover that concern by randomly calling us just minutes after I had been praying about this to offer us her miles to get a free, non-stop flight to Boston on Continental (United)!  Thank you Deborah and Stacey for being the hands and feet of God!

We humbly request that you lift us up in prayer as we fight this battle (completely in God's strength) for our little Gracie's life and for the emotional and spiritual strength/maturity of Abigail and Andrew as they continue to learn (along with us) how to rest and trust in God's goodness even when it is scary or lonely.  One of the things I'm most grateful for in life is how much our family LOVES being together.  Ever since David and I began dating (back when we were just 18 years old), we have spent every available moment together.  By God's grace we were never forced to have a long distance relationship, travel a ton for work, etc, so when we have to be apart for even a couple of nights it's painful.  I completely realize how lame and mushy that sounds, but it is truly part of my prayer request.  Will you please pray that we would all do well being apart for such an extended period of time because even as I type this my heart hurts and tears fill my eyes at the mere thought of our family being separated for so many weeks.  The reason that David will be the one to stay with Grace, while I'm home with Abigail and Andrew, is because A and A just do so much better when Momma is there when they go to bed and wake up in the morning (even though they adore their Daddy).  I trust that Grace won't remember this experience much, but A and A most certainly will and the last thing that I want them to feel is abandoned in any way.  I'm also afraid that I'm going to totally disappoint A and A when they realize just how boring I am compared to David (and I think that I can be pretty fun :-).  They are used to having a ton of time with their Daddy who has endless energy and all kinds of crazy ideas for entertainment (making obstacle courses around the house, building crazy forts, dressing up to have serious wrestling matches, etc).  I can't even be in the room while he wrestles the kids because I get too nervous that someone is going to get hurt, so how am I suppose to supply ALL of that physical fun for the kids in David's absence? Can you believe I seriously worry about this stuff?  I don't want to bombard you with prayer requests, so I guess I will leave you with those for now :-).

Please don't forget to pray that this little honey stays healthy leading up to her surgery, that the Dr's in Boston can perform a successful biventricular repair and that there are absolutely no complications!  THANK YOU!!!  (((BIG HUGS))) for each of you!!!

As we wait to hear about dates from Boston...

We are still waiting to hear from Boston with official dates for our trip out there.  The folks in Boston have been exceptional at communicating so far, so the delay has nothing to do with their lack of attention or follow up, but instead it is a matter of coordinating tests, clinic visits, and a surgery date, all within a few days of each other.  We remain overjoyed and grateful for the hope that Boston has provided and can't wait to hear from them, so that we can begin planning all of the details that go into getting there, meeting all of the new Dr's, surgery, etc, while trying to make sure that Abigail and Andrew don't feel abandoned in anyway.  Will you please pray for ALL of the logistics as it relates to our trip to Boston?

In the mean time, here are a couple pictures from our weekend...

Celebrated Abigail's first lost tooth...

Cheered for Andrew at his 3rd week of t-ball!  Only in Texas is it 75 degrees in the middle of Winter...

Spent lots of family time playing, family movie night, baking cookies, snuggling and laughing A LOT!

...and finally, Abigail and I began preparations to properly cheer on the Niners in the Super Bowl next weekend...  GOOOOOO NINERS!!!

Boston said...

So, the way that I last left you, Grace was in the process of having her heart catheter procedure...  The procedure lasted just over 4 hours and the Dr said that she did great and even gave us some of the pictures of Grace's heart.  She said that they did not see anything new of which they were not already aware, except that her pulmonary pressures looked good (which is certainly praiseworthy)!

Since the heart catheter, the things that have transpired have been like one hug after another from our Lord and Savior...

After Grace was taken to recovery her oxygen levels remained low (her normal is 82%, but they remained around 71%-75%), so they decided to keep her overnight just to keep an eye on her.  She just didn't look like herself that night so I was a little concerned, but I had to leave the hospital around 6:00 p.m. to get home in time to put Abigail and Andrew down (they do so much better when momma is there when they go to sleep and wake up).  When Grace woke up the next day, David sent me a picture of the monitor which showed that Grace's oxygen levels were at 90%; her oxygen levels have not been that high since before her first surgery!

By God's grace, while we were at the hospital we were able to get DVD's made of Grace's heart catheter results, from that day, and of an echo they did last month, which I didn't think I would be able to get that fast, to send to Boston.  I found out that there was a Fed Ex office not too far away from the hospital that had a 7:30 p.m. pick up time.  The hugs from God just kept coming...  David and I agreed that paying the small fortune (about $80+ dollars) to overnight the DVD's to Boston was worth it because Monday, being a holiday, might slow down the process of finding out the options for Grace's heart.   I remembered one of my sweet counterparts telling me about a Fed Ex discount card that she got when she first started with Pfizer, so I texted her to see if she was anywhere nearby so that I could borrow her card.  She offered to turn around and come to meet me, but when I told her that I didn't want to inconvenience her like that, she said to just give them her 9 digit number and that should work.  I honestly didn't think there was a chance it would work because I didn't have the card in hand, it was in her name, and attached to her credit card.  To my astonishment, when I asked the lady who worked at Fed Ex if I could use the Fed Ex account number to get the corporate discount, she entered it and her eyes got really big.  She said "Wow! You get a really good discount!" The cost went from $80 + dollars to..... $14!!!!!  That is shipping it from Houston (at 7:30 p.m.) to Boston (arriving at 9:00 a.m.)!  Can you believe it??????

As I was sitting in bumper to bumper traffic in the Medical Center, trying to get to the Fed Ex office, I was praying and begging God for His peace and reassurance that this was all worth it and just then I noticed that the bright yellow car I was sitting behind (for what seemed like an eternity) had a license plate frame that said Boston Red Sox.  Now, don't get me wrong, I'm not saying that God always gives us signs nor should we require that of Him, but it was one thing along with many others that just blessed my socks off as I felt and so appreciated His personal and generous hugs!

I went home and loved on Abigail and Andrew some before putting them to bed and then as I went to bed alone missing David and Gracie, I received an encouraging series of texts from a sweet friend and amazing decorator who ended her texts with a few simple words that are so true and so what I needed to be reminded of at that moment... she said that I can get some rest and have peace because "God's got this."  I know that truth and believe it, but those words are what I held on to that night, all day yesterday, and this morning, as I waited with peace and patience (well, my form of earthly patience :-) that can ONLY come from God (I believe your prayers unleashed His power to provide me with that type of peace and patience).

Then, this morning I got an e-mail from the Surgeon in Boston that literally made me hyperventilate as I read it.  He said "we see nothing prohibitive with regards to a biventricular repair."  He said that he would like two additional studies done (an MRI and 3D echo) to confirm their opinion and he recommended not moving forward with the Glenn procedure (which is what TCH was planning to do in late February early March).  There really aren't words to express the level of joy and gratitude that I felt when reading his e-mail, so I forwarded it to David to make sure I wasn't hallucinating and then I cried and praised the Lord.  Before I allowed myself to move on to what our next steps were, David and I agreed to just soak in the blessing we had just received and spend time thanking the Lord for His sovereignty and goodness!  We are well aware that we have a long and bumpy road ahead of us, but we trust that God has got it!  

It sounds like our next steps will include going to Boston to have the two studies done and they will tentatively schedule a surgery date to coincide with that trip.  If the Dr's feel, based on the studies, that it is a good time for surgery they will do it then or if they want to hold off on doing the surgery at that time, then we will come home and return at a later date(s).  We don't know how many surgeries are in Grace's future, but we will certainly keep you posted.  Will you please pray for all of the logistics that go into traveling to Boston, being apart as a family, how it will affect Abigail and Andrew, that the two additional studies are just further confirmation that Grace is a great candidate for a biventricular repair, and, of course, that there are no complications to surgery, etc?

THANK YOU ALL FOR YOUR PRAYERFUL SUPPORT!!!  

Roller coaster ride...

I wish that there was a way to have a computer type for you as you are thinking because God has taught me and brought through so much over the past couple of weeks and when I sit down to write it, I stare blankly at the page not even knowing where to begin...  so please stay with me as I take you on my journey over the past couple weeks...

So, I've told you about Grace's Cardiologist who is sweet and I trust means well, but she has a way of saying something at every appointment (beginning back when she did my fetal ultrasounds) that breaks my heart and doesn't sit right with me (if you look at a few posts back I think that you will find some examples).  The Cardiologist has been convinced, from the day we met her, that Grace would need to be a single ventricle despite my deepest desire to find a way for her to be biventricular (2 pumping chambers instead of one).  I have always known/heard the Dr's mention that being a single ventricle isn't ideal for a child with "Up's" (because of pulmonary hypertension that is common in "Up's" children, etc), but even when I inquired about the prognosis, I never received any concrete information.  In fact, when I asked about the mortality rate of patients like Grace she told us that she doesn't really have any patients that have "Up's" and a single ventricle, but that she knows her colleagues have HAD some...  She said that she does have one patient like Grace who is 7 years old and they are considering doing her 3rd surgery that will officially make her a single ventricle, but that her parents want to hold off as long as possible.  When I shared with her my fears about a single ventricle she made it sound as though it wasn't nearly as bad as I had envisioned, so I left having a little more peace about going the single ventricle route.

Well,  a couple of weeks ago I found myself searching the internet for information about patients like Grace.  The crazy thing is that I don't even really know what I was looking for, I just randomly typed "unbalanced AV canal defect with Down's Syndrome" and I stumbled upon information that literally knocked the wind out of me...  I learned that the combination of "Up's" and an unbalanced AV canal defect is actually pretty rare and I also learned that the life expectancy for these children is 7-12 years...WHAT?!?!?!?!?!?!?  Nobody ever mentioned anything of the sort to us and in hind sight I think that I understand why; the reason that our Cardiologist doesn't have any patients like Grace and her colleagues may have HAD a couple of patients like Grace in the past is because they don't live into their teens!  At first I didn't believe this statistic, but the more I read I learned that the parents of children like Grace were told (or not told) the same information as us.  Out of all of the blog posts/comments that I read there was one consistent theme...these parents were all told by their local hospital that a single ventricle was their only option (some were not even given that option) and after some convincing by other parents (that had braved the road before them), they got a second opinion from Boston.  The Cardiology team in Boston gave them hope and life by doing a biventricular repair (in essence giving them a whole heart instead of half a heart).  I mentioned this interesting trend of people going to Boston to David, but all of the information didn't totally sink in until I found a You Tube video of  "Gabe's story."   As I watched it, I had tears streaming down my face because I felt like they were telling the beginning of our story and then all of a sudden I saw that they too went to Boston!  It hit me like a ton of bricks that there is something special about Boston and maybe just maybe God was aligning our steps to go to Boston.  I still don't know if that is His will yet for our sweet Grace, but we are most certainly getting a second opinion from Boston and trusting that He will align our steps according to His perfect will.

I decided to email one of the mom's that had a son like Grace and she shared with me about the tight knit group of families (that consist of about 7 children like Grace) who all went to Boston and how blessed they have been by the way the surgeons and cardiologists in Boston have a heart for "Up's" children and are willing to do cutting edge surgery to give them the best chance at an abundant life.  She asked if she could share my story with the other mom's in this tight knit group and within the next 24 hours I heard from 2 other mom's that had nothing but love, prayers, and encouragement to offer us.  Long story short, I have been reminded of my littlest angel's mortality and the hope that may exist in getting a second opinion from Boston.  While I hope beyond hope that I get a call from Boston that says, "YES!  We can do a biventricular repair on Grace," I know and trust that God's got this and even if we get a "No" from Boston and we are forced to proceed the single ventricle route, and worse case scenario, we lose Grace before her teen years (which would really suck- I know that is not a very godly way to describe it, but sometimes it seems like the best descriptor that I can come up with) I was reminded as I drove to the Medical Center this morning, singing worship songs at the top of my lungs and with eyes full of tears (tears of joy, hope, sadness, etc) for Grace's heart catheter, the words of one of my favorite worship songs reminded me of the hope that we have in Christ!  As I belted out the words, "Oh death where is your sting? Oh hell, where is your victory? Oh church, come stand in the light, the glory of God has defeated the night!"  I felt a peace sweep over me that even if God calls us to give Grace back to Him much earlier than we would prefer, we can celebrate that she will go home to be with her Heavenly Father, where her heart will be made new and perfect, she won't need another needle stick, and best of all (by God's grace) we will get to see her again as we spend eternity praising the Lord alongside of her!

This job of being a parent is seriously risky business!  We spend our life trying to protect ourselves from heart ache and pain (especially those of us who have grown up in divorced families, with an alcoholic parent, etc) and when you become a parent you can't help but fall madly and deeply in love with this little person who will forever hold keys to the deepest part of your heart (therefore, exposing you to the potential for serious heartbreak, as well as immense joy).  When I find myself riddled with the fear of losing this little girl that I didn't even know I wanted so badly, I find great comfort in knowing that God see's and knows our pain.  He is a parent and He witnessed firsthand His son being crucified for the very people who He came to love and save.  The bible says that "while we were yet sinners, Christ died for us."  He has had His heart broken watching His innocent Son die a sinners death and I'm sure His heart breaks as we (His children) sin against Him day after day as we make our earthly idols more important than Him.  Here is how I pray that I can spend my day today (and every day)...

There have been so many little "hugs from God" lately, but one that just happened right now is that I checked my e-mail and there was a message from the surgeon in Boston, who is going to give us a second opinion (as soon as I'm able to get all of Grace's records sent to him), simply stating that he looks forward to reviewing Grace's case, etc.  I spoke with his administrative assistant on Monday, to make sure I knew what I needed to send and where, so I wasn't expecting a personal e-mail from the surgeon himself.  I responded back to him thanking him for the e-mail and for his willingness to give us his opinion (of course I attached a picture of Grace, just so that he could have a visual of the little sweetie that we are talking about :-) and here is the response that I just got back...

Kristi

Thank you for the picture! She looks like such a happy girl!

We will look forward to reviewing her studies.

Good luck today (He said good luck because I told him in my e-mail that Grace was in for her heart catheter right now).

Thank you for staying with me through this long explanation... here is where you come in, sweet friend and family: Will you please pray that (per her heart catheter today), Grace's heart looks healthier than any of the Dr's ever imagined possible, that there are no complications from the heart catheter today, that we are able to get the results from today and her echo quickly and sent off to Boston, and the biggest prayer request being that Boston gets back to us quickly with a YES! (that they can do a biventricular repair on Grace)?

Here is G-dog before going into her heart catheter this morning...

Here is one of the lucky charms from the 49er game last weekend...  Grace and I sat like this for the whole 3rd and 4th quarter, the whole family had their Niner's shirts on, Abigail even slept in her shirt (she didn't get to finish watching the game because it was way past her bed time).  Since it worked last weekend, maybe we need to do a repeat this weekend...  "it's only weird if it doesn't work, right?" :-)

Thank you for your faithful prayers and friendship!  I'm praying that you will feel loved and appreciated today because you most certainly are by the Ross Family!!!

4 month old check up and a little more...

I pray that 2013 has been good to y'all so far!  I had every intention of posting tonight with an update on Gracie's 4 month check, as well as a good bit of the emotions that I've been dealing with the past week or so; however, this evening has sucked every bit of energy out of me (more on that in a minute), so this will be short and sweet, but I promise that there is a post in my heart that I want to share with you (when I have a little more energy and brain power).  So... the reason for our increased exhaustion tonight is thanks to our littlest angel Grace!  She has to be the sweetest and most laid back baby that I have ever known.  She hardly fusses and when she does it is for a definite reason, like I'm starving, I have gas, or I'm ready to do something else because the novelty of this swing has worn off :-).  Her fussing starts out as little meow's (hence her nickname Kitty) and as long as you respond to her meow's within a reasonable time, she is happy.  HOWEVER, if she is over due to eat and overly hungry, she will have what we call a FUSS BOMB!  Now this has only happened a hand full of times, but tonight was the absolute worst we have ever experienced.  She went longer than normal between feedings tonight and we really didn't get any meow warnings because she would sleep and then wake up and want to hang out and then go back to sleep, so we messed up by not just feeding her and waiting for her cue....  Well her cue was, bypass all meow's and drop a 40 minute fuss bomb out of nowhere that was full of inconsolable screaming with a blue face!  That's one way to scare the life out of your Mommy and Daddy!  I forgot to mention that on top of being hungry, she had her 4 month old check up today, so she got 2 shots that the Dr warned us would be painful, so to give her Tylenol on a schedule.  Well, we tried to do Tylenol on a schedule, but little miss social was too busy smiling, cooing, and pushing the medicine out of the sides of her mouth (this isn't due to a mommy and daddy that don't know creative medicine giving techniques because after all we give her medicine 6 times a day :-).  Needless to say, she wasn't getting full doses of Tylenol and she was starving, so she brought us to our knees, begging God for wisdom and favor since we were debating taking her to the ER.  By God's grace, after about 40 minutes she calmed down, being bounced and patted on her back by Daddy and watching Tinkerbell up close (literally inches away from the tv).  What ever works, right?

Now for the 4 month old stats!  Drum roll please...  on the "typical" chart she is exactly what Abigail was at this age, 10th% weight and 5th% height.  Now on the "Up's" chart (remember they have a separate chart because they tend to be smaller) she is in the 80th% for weight and 50th% for height (so basically she is a big circle- short and round :-).  I'm so proud of her weight because I always worry if she doesn't finish her whole bottle, while her Daddy takes it all in stride (like everything else).  They have said from the beginning that weight gain is very important in heart babies because lack of gaining weight is a sign of a sick heart and when it comes to surgery, the more tissue they have to work with the better.  Well,  Grace certainly got that memo!  Praise be to God!!!  

Here is the big 4 month old...

Here are some of my favorite pictures from Christmas break (for those that have seen some of these on Facebook, I apologize :-)!

This is one of our new family traditions (as long as Grace can be sold on being the elf), it's called "Gracie Elf" (instead of Elf on the Shelf), we hide Grace somewhere in the house and the kids have to find her and when they do they get the present that she's holding.  We did this on Christmas Adam (the night before Christmas Eve:) and Christmas Eve.  The first night we hid her in one of the baby strollers in the play room and she was holding the game Jenga (I wish I thought to take a picture of her in the stroller, it was precious)...

 The second bight she tried to blend in with the stuffed animals on Abby's bed and she was holding this bird house thing that the kids wanted...

We cheered on the Niners with Lu Lu...

We had a reenactment of the Christmas story with all of the Cousins.  Grace was on her best behavior since she was cast as the star of the show (I guess their wasn't a lot of competition, but she took her role very seriously).  Abigail was thrilled to get to be Mary because she thought it was so special to get to play Grace/baby Jesus' Mommy and then there is Andrew...  He was given the choice to be Joseph, a Wise Man or a Shepard and in typical Andrew fashion he said he wanted to be a sheep.  He also took his part very serious as he allowed his Grandpa to tape cotton balls on his face (this is the same kid that is all kinds of drama when it comes to pulling bandaids off).  All that being said it was a sweet time!

Here is our Daddy's girl with her world class Daddy, just hanging out...

This is one of my favorite pictures because I can't tell who is more excited about Partysaurus Rex...  Andrew or his Grandpa sitting right behind him.  Also, Abigail has learned she needs to have cat like reflexes around her crazy (but so sweet) brother...

 Here are my middle and big angel with their favorite Christmas gift...

We did a lot of snuggling...

 Just being cute...

And snuggling some more...

Abigail had a sleep over with her best friend Ju Ju... 

Last night we had a family movie night and slumber party in the living room to kick off the end of Christmas break and going back to school (of course we didn't know that the paparazzi was taking this picture, but glad he did :-)...

Well, now you're caught up on what we have been up to for the past few weeks.  I look forward to catching you up on some lows and lows (just kidding, there were a few highs) that I have had this past week, as I have been contemplating God's plan for Grace's future (as well as the rest of our family).  The high is simple and unchanging, God is soverign and can only do good (good being defined as what He knows is best case scenario for our sanctification), so what ever His plan is, it will be good! Not easy (because easy doesn't = good) or without pain (because pain draws us to the thrown of grace), but GOOD (in a way that only God can do)!