Wednesday, January 16, 2013

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!!!

3 comments:

The Keierleber Family said...

Boston Children's hosptial in #1 in the country, period. Philadelphia is #2 and TCH is #3. You're in good hands, but def worth looking into the #1! I would if we needed to! praying for y'all!

Julie Wigle said...

Hope today went well Kristi! Thanks for explaining all of this with the heart.....and we will be continually be praying for Grace and God's will for the Boston plan. My kids said, "She has to go to the hospital again?" Miss you all!

Elsa said...

Kristi, thank you for sharing your journey with us. It is an honor to pray for your family. I've been keeping up with your posts and I'm always SO deeply moved by your faith and how God is working in your lives. It is inspiring to see how you are able to see this tough journey through His eyes. Grace is such a blessing to us all! We love you all and are lifting you up in prayer everyday!