Tuesday, December 11, 2012

Got plans...

I put Grace in this onsie today to serve as a reminder to a powerful truth...and that reminder is exactly what I needed today...

Jeremiah 29:11 says "for I know the plans I have for you, plans to prosper and not to harm you, plans to give to you hope and a future."

Grace's marathon cardiology appointment (it lasted 4 hours) went well...  She was such a trooper as she had to get a blood pressure check on each arm and leg, oxygen levels, weight and height measurement, x-ray, echo, etc.  The praises from the appointment are that her cardiologist was very impressed with her weight gain, her numbers/vitals (blood pleasure and oxygen level), and the way she looked.  The part of the appointment that sort of got me down was hearing that the left side of her heart is still the same size (hasn't grown) and the cardiologist is still pretty convinced that she will be a single ventricle patient. However, last time they presented her case, some of the cardiologist and surgeons were split on how to proceed with Grace (single or double ventricle), so there is always a chance that when the surgeon reviews her recent echo and see's the results from the heart catheter that she will have done in early 2013 (where they put a camera in her heart to get a much more detailed look at what is going on in there), he may have a different opinion.  I asked a ton more questions about all the possible scenario's and I have a lot more peace about the single ventricle route, it is less scary than I previously thought (don't get me wrong, it's still SUPER scary, but maybe not as super duper scary as I thought :-).

Another part of the appointment that I need to give back to the Lord and not chew on it any longer has to do with some of the comments our cardiologist has made, past and present, about kids with "Up's."  When I asked about the mortality risk associated with single ventricle patients with "Up's" she basically summed it up with "well Down's people only live to the age of 30 years old anyway."  That statistic is very different from the one that David and I have researched that said, "Up's" peeps live to an average age of 55 (and I've heard stories of people that have out lived that statistic).  I know that adding her heart complications on top of that may reduce her life expectancy, but our God is not a God of statistics, so worrying and fearing about the future causes me to miss out on the abundant blessings right under my nose.  David and I have had very real conversations of there being a high likelihood that if one or both of us live long and healthy lives (into our 80's), there is a high probability that we may have to bury our little angel.  That makes me cry just typing it, but I know that we were never promised life.  Thankfully, God's grace is sufficient in all circumstances and His plan is not to harm us, but to give us hope and a future.  There are so many more truths that we will continue to hang on to, especially Mathew 6:25-34 (I know that you are busy, but I promise that you will be blessed if you look up these verses and soak them in :-).  I guess we can just pray that Jesus return's before we have to worry about any of the details regarding Grace's future, that way we can all go home together ;-).  Our next cardiology appointment is Jan. 31st and we will have the heart catheter sometime soon after that and then surgery some time after that...  We will keep you posted of course.

Andrew did an awesome job at his 4 year old check up today (so David says, I didn't go because I'm too weak to have to witness him getting 5 shots).  His Dr did still hear the heart murmur and she said that we could either keep an eye on it and see if it's still there at his 5 year old check up or she could refer us to get checked out by the cardiologist (since she knew that would probably ease Mom's concerns- she knows me too well :-).  Therefore, we will take him to the cardiologist sometime in early 2013; it will probably be the same cardiologist that Abigail went to as a newborn because they thought they heard something wrong with her heart when she was born (she turned out to be fine- PTL!). I'm telling you, we can't catch a break when it comes to ticker problems...

Will you please continue to pray us through our journey because I can't begin to express what an intregal part of our journey you are!  When you petition the Lord on our behalf, post sweet comments, or send a personal e-mail, text message, etc, it ministers to us in such a BIG way, I can't even find the words to explain it.  As I was driving today, I was thinking about how much I would love to send each one of you a personal Christmas card this year, detailing the things about you that are special to me and the things that you have said, done, or prayed that have blessed me.  I know it is highly unlikely that I will be able to make that dream a reality, since I can't even get a Christmas card together this year, but I pray that someday I can thank each of you personally.  Even if you just stumbled onto this blog and I have never formally met you, please know that just your interest in reading about our journey is a blessing to me, so I include you in my previous statements.

4 comments:

Diana Karnezis said...

I enjoy reading your blog. I met you once when I dropped off the bassinet and although I dont ” know” you, it seems one doesnt have to ” know” you long to simply see and feel the love you have for your babies, your family and your faith. You are an inspiration to ALL moms! Stay strong. Prayers for Gracie and all of u said!

Catherine Marcum said...

I love reading your blog and the fact that you take time out of your busy life to keep us informed is a blessing to all who read your eloquent words. Thank you so much!! Your lovely family is in my thoughts and prayers often. Merry Christmas to you all, much love Catherine Marcum.

Kathy A. said...

I am so glad to stay informed on little Grace's condition so I can be more specific with prayers. One thing I have learned over the years (especially when Gary was sick) was that it is waste of time to dwell on the "what ifs". Most of them (or perhaps all of them) will never happen! God is sovereign, and we are to trust in Him through all things, big and little. I know that's sometimes easier said than done.

I am thankful for your strong faith because it will pull you through whatever comes your way.

Love to you,
Aunt Kathy

Caryn said...

Your statement, "I guess we can just pray that Jesus return's before we have to worry about any of the details regarding Grace's future, that way we can all go home together ;-)." I can so much relate because that's exactly what I hope for Christian.