Wednesday, November 27, 2013

Mascara or no mascara?!?!

Today was pretty uneventful for Grace...up until this afternoon.  For most of the day, Grace slept, ate, vomitted half of what she ate, played, and went back to sleep.  She was doing pretty good on just half a liter of oxygen, so the nurse got a new attachment for the oxygen and weaned Grace down to a quarter of a liter.  Grace fell asleep and within 15 minutes Grace's oxygen saturations were in the 70's (the goal is 100%).  At one point, Grace decided to desat, which means her saturations were in the 60's.  The nurse gave Grace some physical therapy, which means that she beats on her back to try and loosen anything up in her lungs, but that did not help to bring it up.  She raised the amount of oxygen she was on to two liters, but still nothing changed.  The nurse practitioner had us go down to get an X-Ray, to see if Grace's lungs were filled with fluid, but her X-Ray looked great (even better than yesterday).  We get back to the room and hook Grace back up to the monitors and her saturations were still in the 70's.  The nurse called in the charge nurse to have her help troubleshoot.  The charge nurse recommended for the nurse to make sure the oxygen from the wall was flowing properly....well, problem solved.  It turns out the oxygen was not tightened all the way to the wall, so once the oxygen was working properly, Grace was back to 95-100%.  Well, I guess one thing we learned from this is that Grace needs oxygen, even if it is just half a liter.  Hopefully, this is just one more piece of information for the doctors to get closer to making a decision.  Grace is scheduled to get another echo on Tuesday, so until then Grace and I will just be partying on the step-down unit.  I hope and pray that everyone has a great Thanksgiving tomorrow!

I'm back - So, I start each morning, by asking myself a very important question as I'm getting ready…  "Is it safe to put mascara on today?" Some day's I'm wise and make a good choice, but others not so much. Yesterday, I made a bad call and put on mascara, but boo hoo'd it right off (in the beginning of the day) because I so badly wanted to make Andrew's birthday so great that he wouldn't have even known that his daddy and baby sissy were missing.  Wouldn't you know that he had a GREAT day (praise the Lord) and it was me that was overwhelmed with my "to do list" and missing the other half of Team Duck's terribly.  I've learned that I'm like the kids, FaceTime always sounds like a great idea, but it is more painful than we could have imagined.  I love seeing Grace on FaceTime because it helps so much to see her preciousness in person.  It serves as a reminder that she is still alive and well (… "well" being a relative term :-)…

Check out this sweetness!  One of the nurses gave Grace a Cinderella balloon, that I love seeing her play with, however, my favorite part of this video is that she let go of the balloon to wave to her Mommy.  Be still my heart, be still...

but on the other hand, seeing David on FaceTime… takes me days to recover from :-(.  I assumed that today would be a no mascara kind of day because I decided that this evening the kids and I would go get a small Christmas tree and some new decorations (for our little tree) to put up this weekend.  Our normal family tradition is to put up our Christmas tree and decorate the house the weekend after Thanksgiving.  It just doesn't feel right to pull out our huge Christmas tree and zillion ornaments because this Christmas is not "normal," and it is also a major operation to make all of that happen without David here.  However, it doesn't feel right to start a new tradition, by getting a new small Christmas tree with some new ornaments either... After some prayer and talking to the kids about it, we were all on board and excited about getting a new "special tree" that we decided to decorate in "Up's" colors (blue and yellow are the Downs Syndrome awareness colors) to celebrate our Gracie Doo!!!  I will let you know how it turns out :-).

We have SO VERY MUCH to be grateful for this Thanksgiving, it's hard to even know where to start! I think I'm going to have to copy my 6 year old as to the top 4 things that I'm thankful for because she nailed it :-).

This sheet of paper came home in Abigail's school folder yesterday…
I know it's kind of hard to read because of the glare, so I will translate and add Abigail (and Andrew's) description behind what she wrote (per our discussion last night):

1) God-  "that God is always with us no matter what and we can trust Him"
2) Jesus- "that Jesus died on the cross for our sins and that we will get to live with God in heaven, forever"
3) Family- "that God gave me the best family ever and I love them so much"
4) My little sister, Gracie- "that God made her so strong and I love her so much.  I'm also grateful for the Dr's and nurses in Boston that know how to take care of our Gracie"

And I would have to add, I'm thankful for the most phenomenal Village in the World!!! 

Abigail's list captured much of my thanks, however, there are so many life giving/life changing lessons that have come out of (and continue to be refined in) this HOT, HOT, HOT fire in which we are currently living.  There is no question that these lessons can only be learned in the fire, so we are thankful for the fire, but even more thankful that we can walk through this fire and trust that we won't be burned because no matter how hot this earthly fire gets, our ultimate fate is sealed.  Like Abby and Andrew said, "we will get to live in heaven with God FOREVER" because we know that we are sinners in need of a Savior and have therefore accepted His free gift of salvation.  Clearly, our Gracie Doo hasn't made this profession of faith and she may or may not have the ability to do so, but we believe based on various verses in scripture that Gracie will also spend eternity in Heaven, for which we rejoice. It is the hope of eternity that gets us through each day, with or without mascara :-).  I selfishly pray this Thanksgiving that we get to spend decades with our Gracie Doo before she departs for her heavenly destination, but the truth is that tomorrow isn't promised for any of us (not just those fighting for their lives in the hospital), so despite how we may feel, let's "give thanks in all circumstances; for this is God’s will for you in Christ Jesus." 1 Thessalonians 5:18

I pray that each of you has a HAPPY THANKSGIVING tomorrow!!! XOXO

1 comment:

Caryn said...

Beautiful Post! We missed seeing your sweet family on our recent visit to TX, but we enjoyed sitting next to your parents at church.