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...
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?!?!
1 comment:
We talked tonight in our small group about the sermon today at church - how life's music wouldn't be nearly as meaningful if it just consisted of "white keys" (you could only play chopsticks!). Instead, the black keys are necessary to make our life the masterpiece that it is - drawing us into a closer and closer relationship with God. We commented tonight that your family's life has consisted of MANY black keys lately (you can stop now, God!) but I'm sure your faith has grown in a way it never would have otherwise. Why shouldn't we trust Him, after all he is Creator of the Universe, Holy and Sovereign! Our human brains cannot comprehend it.
Love to you,
Aunt Kathy
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