For the past 10 days or so, we have watched Gracie turn colors once again. She's pretty blue most of the time, she's throwing up again, she's really clingy to Mom. We had three full months of excellent health, then all of sudden, while we were in Florida actually, she began to turn blue. At first we thought, perhaps she's just not getting enough sleep, maybe it's the climate...talking ourselves into all of these other great options.
This is a tough one to watch, a tough one to swallow. It is taking us a bit by surprise, yet we know it is not taking God by surprise. I don't think any doctor who follows her case is going to be taken by surprise either. Why, oh why, oh why?? When Gracie was still in St. Louis as a young infant, several doctors actually tried to talk us out of adopting her...can you even imagine?? I can't wrap my mind around this because Gracie is our daughter through and through, yet I know they watched us, feeling as if they had to let us know what her life would be like. In reality, they knew nothing. God has revealed an amazing, obvious miracle to us through her, we wouldn't change a day of her sweet little life so far. What I'm getting at is this...Gracie has a very serious heart disease which is and is going to be a constant battle. We enjoyed a little reprieve, praise God for that, but we must continue to trust the ONE who created this being and placed her in our arms.
It's odd because when we go into the uncertainty of what's next for Gracie, it is when my life is seriously most peaceful. I am quiet before the Lord, I know He has us in His grip, I know He knows Gracie's days and His desire for our family is for good. He is good. Many, many days, especially when Gracie was very little, I wanted to watch Him be big. I wanted to witness the miraculous, I wanted her healed perfectly. Although I still desire those things because I love her so much, I really just want to know Him better...I want Him to invade our family...I want us all to trust Him with not only Gracie's life, but with all of our lives.
I don't want anyone to freak out. Gracie is blue, but she's been here before. We're just starting the ride again...she's not in any state of emergency, just in a downward trend. On May 4, we have a long day at Mayo with tests and visits with her cardiologist and cardiac-thorasic surgeon. Then on the 5th, she will have some stents placed in her pulmonary artery. Because of this scheduling long ago, my guess is the doctors already knew this was going to happen. Then we will talk about what is next.
Children with hypoplastic left or right hearts typically have a procedure done called the fontan, which is the third in a series of three surgeries. Gracie has now had the first two typical surgeries--a BT shunt and the Glenn shunt. Now they will decide if she will be a candidate for the fontan. She does have a hypoplastic heart (we don't know which one...not everyone is in agreement because of her heterotaxy syndrome, her organs are all misplaced), but because of her other defects, the fontan may not be an option, it may not be a good option. For heterotaxy patients, it has had some success, but definitely hasn't worked out for many. This is where we just allow the doctors to be the doctors and we are Gracie's parents. I found out early on that I read way too much! For the past year or so, I have completely stopped reading about these things because, for one thing, I am not that smart. And another, Gracie's doctors are amazingly smart! God has given them much, much wisdom and completely has guided their hands...He's the One who is control, the author of her book!
I will try to take some pictures today of Gracie. She's beautiful...blue and all! Her favorite song is still "I'm so blue..." by Madame Blueberry (VeggieTales). If I could figure out how to put a video on here, you would all be blessed to hear her rendition...right, Sara?? Maybe my techie sons could help me...hmmm.
All else is well around here. We spent the weekend in Des Moines because Curtis had a conference there. I never think of our family as being a large one...UNTIL we go our for dinner or shopping!! Five kids shopping for 7 hours--yikes! Actually four of our kids are super easy and lots of fun to shop with. Then we have Gracie. Oh my!!
Have a wonderful day!!