Gracie is now officially listed on the heart transplant list in 1A status (highest you can be). So I say, game on!! I am just going to tell myself right now that it is going to take months so that I will be pleasantly surprised if it isn't!!
Gracie came off C-Pap today too!!! It has been a good day. She is on high flow oxygen and has just been chillin all day. She has hardly made a peep. She has been alert and awake and has barely slept all day. She is moving her left leg a little more but her left arm hasn't shown as much improvement as her leg.
The BIGGEST difference that I have seen since we've been here is that she has not thrown up her milk ONCE because she is being fed with an NJ tube that goes straight through her stomach into her intestines. I think she has been so good here because she has finally had a break from throwing up 4-5 times a day. What relief she must be feeling. At least I'm happy for that part of her stay here.
I talked to the transplant team today and they think she will be in the PICU for a couple more days and then move to the third floor. There are things I like and don't like about the third floor. The thing I dislike the most is that she does not have a nurse watching her at night when we leave. She is in her own room by herself and they just don't watch them at all like they watch them here in the PICU. But, we will just have to make the best of the situation we have.
Gracie has had the hardest road to recovery of any baby that I have read about that has lived. We are hoping that this time, she will catch a break and maybe get a heart soon? I don't think that is too much to ask, do you? So we will pray that she receives a heart before it's too late. Thanks again for all of the love and support you have shown our family and our 'GG'.
30 comments:
Not too much to ask at all! It is time Gracie girl got a decent break. Maybe she was saving up to cash in all her good karma for now? She is the toughest, sweetest fighter on the planet. Good luck with the third floor. I know exactly what you mean about having the one on one though...Just create a schedule and I'm sure you'll have legions volunteer to watch over her. Sign me up! :)
My name is Dayna, you don't know me but I just started following Gracie's story about a week ago and can't help but love her! I pray for her and your family every night. She is a beautiful baby girl! Miracles happen every day!
That is wonderful news! One step closer, I guess we should be grateful for sweet little babysteps. At least she is heading in the right direction. Yippee!
Wow! I am so happy she is finally on the transplant list. Now we just wait...I can't imagine how you must feel right now. I really want to come visit you and bring up some lunch. I'll call ya and see what we can work out. Keep up the fight Miss Gracie - our little miracle girl!
Sending lots of love and prayer!!
Nat
I am so glad to hear this reassuring news. Its been a long time coming.
I pray for peace to continue to be with your family. Heavenly Father knows what is going on. He has a plan, sometimes it takes the faith of others to bring to pass the blessings that are ours. They are on their way!
Debbie
Can't wait for the call!!!!!!!
Happy Listing day!! What a relief to be officially on the list. We will pray that she will be ready when her special heart comes. Much love, Hilary
WOW...that all happened so fast! My husband and I used to say the day our HLHS son was born, our lives changed forever....isn't it amazing what one day, even second can bring? Goodluck during the "WAIT"...enjoy the days and months ahead (even if it is in the hospital)!
I am so happy to hear that Gracie is on the transplant list. She has been through so much and really deserves to have a chance for good things to come her way.
Yay! It is so nice to get some good news, eh? You have such a great attitude about everything right now - thanks for being such an amazing example to all of us. And I'm sure you will gladly take any victories you can get - like not throwing up! That is a big one!!
And, I'm with Natalie. We want to come up and see you and bring you lunch or something. It is hard to know what to do to help right now - but I am up for anything you need.
Here's to a good day for Gracie!
Wow! Way to go Gracie Girl, Congratulations on being on the heart transplant list, I bet you guys are glad that part is over.
So glad insurance and everything worked out. Our prayers are with you
for a heart soon.
Oh my goodness...finally some great news! She is most worthy - we will pray she receives a healthy heart soon!!!!!
That is fabulous news!!! Maybe she will have a brand new heart for her birthday?! That would be great wouldn't it? So glad she is doing better and that she has not thrown up. We like good news posts. And yes, she for sure deserves a break. :)
No it is not too much to ask!
My prayers are with you.
Yeah for you guys. I'm so happy for you guys.
Our family will be praying for yours and the prayers will be far reaching... God bless you...
Tom and Michele- Tom this is your distant cousin Staci Sannar Gee (daughter of Rhenon and Steve Sannar, grandaughter of Thaine (Nola's brother) and Patra Taylor). I have been following your blog since Gracie was born and have to say I have been so touched by your experience and by Gracie. It has been a very "heart" wrenching but amazing story to follow. My children Emma 8, Ethan 5 and Hannah 2 have also been very touched by Gracie and we have all prayed for her and kept her in our daily thoughts and prayers. We know Gracie is a fighter and that she has a reason to be on this earth at this time. She has taught us so much and she truly is a special daughter of God. We pray for you and your family to be strong and to keep the faith through these next few months of very difficult times. We know you have been amazingly strong and have had so much faith thus far. If there is ANYTHING we can do for you ever we would love to, PLEASE let us know. I know you have lots of family, friends, neighbors and support but we would love to be of an help we can. I am a nurse and use to take care of transplants at LDS Hospital until I chose to do Labor and Delivery, a much happier place. I have to say though, working with the transplants was also very rewarding and so much fun to see their lives change from so much sickness and sadness to as close to "normal" as you can get. We love you all so much and love to follow your blog. Thank you for taking the time out of your busy lives to let us be a part of this special and difficult experience for you. All of our prayers and faith are with you. Keep the Faith and best wishes while waiting for this "heart" to come. Love ya lots, The Gee Family
I'm Kadience's Nanna and my heart breaks for you and your family. As i read a few posting it took me back to the many months Kaidence was in the hospital. I feel you pain and pray the Lord will continue to bless little Gracie with a new heart and bless your family with comfort and peace.
Kaidence's Nanna
We're praying for her heart to come SOON! We're going in for our second round of iVIG today. I can't even being to tell you how excited I am to hear that Gracie doesn't have an anitbody issue. It appears that Owen's are crazy high and so without his treatments... he most likely wouldn't get a heart.
Gracie is a little miracle and her new heart will make it.. I just know it!!
I have been following Gracie's blog for quite some time now. She is so darling and I wish you the best of luck! You are often in my thoughts and prayers. You are a great example of faith and hope
GAME ON!!! We are all rooting for her!!!
Bless your heart! I hope all goes well!!!
This is fabulous news and I hope that she'll receive a new fabulous heart any day! I think of your family every day and haven't even met you. I will continue to send positive thoughts and prayers your way. Maybe one day we can meet and I can see this miracle baby! Go Gracie-you are the true meaning of heart and soul!
Best wishes,
Marshelle (Mindi Cox's friend)
Having been on the other side of the organ donation process, it is exactly that, a process. One of the things that will help the donor family get through their trial is knowing that they were able to help another family. My thoughts and prayers are with your darling little Gracie and your family.
Such great news! Our thoughts and prayers are with Gracie and your family. She's a fighter!
We will pray specifically for a heart for baby Gracie!!! Stay strong and know that you have so many who love you and pray daily for your little fighter. Last night I was at my parents for dinner and my dad said the prayer-he prayed for Gracie too!!! She has touched so many and we just hope and pray that our many prayers will be answered!!!!! Love you guys!
We will pray specifically for a heart for baby Gracie!!! Stay strong and know that you have so many who love you and pray daily for your little fighter. Last night I was at my parents for dinner and my dad said the prayer-he prayed for Gracie too!!! She has touched so many and we just hope and pray that our many prayers will be answered!!!!! Love you guys!
Michelle-we are keeping Gracie in our prayers. Good luck to you and your family! Hopefully Gracie will receive a heart soon
What great news. We are praying for a heart.
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