The day was successful. They transported Gracie to another floor and had to put her on her tummy to get the PICC line in. Our nurse said they got a little donut pillow for her head and her leg area so that her chest would not be compressed. The nurse said she rubbed her back the whole time even though I think Gracie was asleep throughout the whole procedure. The nurse said that her back looked good, no bedsores or anything.
Dr. Burch had to take Gracie's chest tubes out because the large one of the three required stitches. So, they came and removed all three---she looks much better!!! Yay! After they put her PICC line in her leg, they were able to remove the IV's out of her neck too.
It sounds like the next step is to start weaning her off the ventilator and to eventually get that breathing tube out of her throat! To answer the question of when we will be able to hold her, she still has a couple of lines going directly into her right atrium. They are administering certain drugs through those lines still and don't have any immediate plans to remove them. They will not remove them until they have to because there is no way of putting them back now that her chest is closed. So, it sounds like even if they get her off the ventilator, if she still has those RA lines then they won't let us hold her!! This could be another week or longer. I have to admit, the better she gets, the shorter my patience is in getting to hold her. But again, we truly are grateful that she is even here and alive, so we will try to continue to exercise our patience!
We have witnessed a modern day miracle in our lives these past 10 days with Gracie coming off the ECMO machine and closing her chest with no big complications. I am extremely grateful and humbled by our Heavenly Father's love for us and for our Gracie. Thanks for all of your support. We have received hundreds of emails and comments on our blog, many from strangers saying that Gracie has impacted their lives for good. She is such a special spirit and we hope to have many more days with her, however many days it may be. We happen to have the advantage of not knowing how long we will have with our baby. This knowledge will help us live every day with her to the fullest. Some don't have the advantage of knowing their time is limited with their children and loved ones. It is my desire that Gracie will teach all of us that life is fragile and temporary. We need to appreciate the ones we love while we can. That may be her greatest gift to us. Thank you my Gracie Girl, we love you.
26 comments:
Wow... it is hard to read through my tears. What you wrote at the end about the lesson Gracie is here to teach your family (and all of us) is beautiful. What a powerful message for everyone. Thank you again.
Michele, that was so sweet! You strengthen all of us with your strong testimony and faith. I am so lucky to be a part of your/her family! I'm so glad she had a good day and hope for many more good days to come. I can't wait for Saturday for some well deserved pampering! Then hopefully it won't be too much longer before we can hold that sweet baby in our arms! I'm getting anxious too!
Love,
Tiff
Dear Michele,
You are right that Gracie has touch many lives during her short time on earth but so have you. Your faith and courage is truly an inspiration. I probably will never have the privilege of meeting you but I will always remember you. Thank you for the example you are setting for all of us. I will continue praying for Gracie and your family. I will also continue putting her name in the Reddland's temple when I go to work there each week. I hope she has a good night tonight. God Bless!
Michele,
That was such a sweet post! I too, spent Saturday in the Bountiful temple praying for Gracie, and put her name in that temple too. I know that Heavenly Father hears our prayers and knows your sweet family. I will continue to pray for her health and strength.
In the meantime, what a strength you and your family have been in my life. Life is precious. I have spent much more quality time with my children, and held them a little tighter since knowing little Gracie. Thank You for being a blessing in my life...
Tami
I talked them into letting me hold Ryker, breathing tube and RA lines and all. Sadly, this was the last time I held Ryker before he passed. I did not understand why they did not want me to hold him until I help him then. He was happy for about 30 seconds and then was just really upset. It took a lot out of him, and they then had to wait a day to trial him off his ventilator again. You can request to be there when they change her bedding and for them to hold off on her bath until you can be there and you can help do it! You could also be the one who lifts her when they do the linen change. I do not know if you are comfortable doing any of these or if you already do. I agree that it is a neat experience (and stressful) to live each day like it could be your baby's last. She is just so strong and truly a miracle!We are coming up on the 29th of this month to an appt. with the geneticist and we were wondering if we could just stop by and meet you guys and your amazing Gracie,(or just bring Gracie a gift!) Let me know, my feelings will not be hurt if not! Gracie really has touched all of our lives!
Our hugs and prayers,
Emily and Mike
We are Teagan Pettits family and have been checking on your little Gracie everyday. When we thought she wouldnt make it we prayed for a miracle and made a blanket to comfort her. We are so overcome with joy that she is doing so well. Its funny that such special spirits can change your view on life so instantly. Thanks for sharing your sweet little girl with us. love Eric and Allana
My Dearest Daughter,
You have inspired us all with your beautifully written words. I have stood by you side this past month watching you, sometimes in agony, at what you have had to experience. You have great courage, strength, faith and wisdom. Gracie is so fortunate to have you for a mother. With bent knees I am also thankful to our Heavenly Father for the renewed life of this sweet child. May the sun continue to shine on her.
With love,
Mom
YAY!!!!!!! I cried when I read your post. I am so happy for your family. I am so glad Gracie is doing so well. You're right, she has impacted so many people. I appreciate my boys a lot more and cherish every day with them!
Ok, I can't read through the tears . . . first of all that Gracie is doing so well. She is such a sweet miracle. I am so grateful for her beautiful little spirit that has touched so many! And secondly, Michele, your perspective on having Gracie in your life is amazing. You have inspired me so much through all of this. I've always know you are strong, but you've proven to be much more than anyone could imagine having to be through all you have faced so far. Thank you for your example in my life.
And thank you, Gracie! You really have taught me to appreciate my loved ones even more each day. That gift is priceless!
Thank you guys for the opportunity to share in this journey with your family. I have been strengthened by reading your words and seeing the miracles that have surrounded sweet baby Gracie. I have come to better understand prayer and strength in numbers. I have been so grateful for your feeling the strengthening power of the spirit when things are so difficult. I know that is what made the difference for us as we watched and waited worrying over our little Jacob. I hope you get to hold Gracie soon!
hugs and prayers,
Christina
Michele,
I have to say that you are exactly right. I seem to have more patience with my children, love them a little more, enjoy the "process" a bit more of their care because of Gracie. Thank you for sharing all of this with us, and for you strength and testimony. You have made a lasting impression.
Hope you have a good day!
I'm not sure how I came accross Grace's site, but I have been following her journey for quite awhile now. What a blessing it has been to share in her life, and see the miracles that God has performed. I also have a son with HLHS, he is 3 1/2 now, and has had all three of his surgeries. We will continue to keep your family in our prayers.
Stephanie Husted(mommy to Braeden HLHS)www.carepages.com: babyhusted
So glad to hear the good news!! We will keep her in our prayers.
Congratulations on getting the chest tubes out, this puts her just one step closer to getting out of the PICU. About the RA lines, Sydney's came out about a day or two after she was off the ventilator, but the nurses let me hold her even when the RA lines where in her heart, we had to be extra careful when we held her but there may be hope that you can hold your little Gracie sooner then you think! There is nothing like the feeling of holding your baby for the first time after she has gone through something so scary, I am sure that you will treasure every second of it! Good luck and stay strong! -Caralee
Thank you for sharing your journey with us. Gracie is such a precious little girl. She has taught me so much and I have never even met her. You are all such an amazing family and an example of faith. I am so glad she is doing so well. We will keep her in our prayers. Best wishes in the days to come.
Jenny ( Brynn Homers cousin)
As I read the last part of your post I just had the feeling that that was spoken from a true mother. We all feel like we love our kids but your love for Gracie and Heavenly Father's plan is awe inspiring. What an amazing example you are! Thank you so much for sharing your journey with so many strangers. It is so true that Gracie has touched so many lives. My husband and I anxiously check the blog each day and triumph with your triumphs and cry with you. I'm honored to be a privy to this amazing sweet girl. Thank you.
Couldnt be any better said. I feel blessed that Tyler came to our family to make me treasure every day we have with our children and the value of a eternal family. You are so very blessed that Gracie chose your family. I just love your little girl even though I have never met her. Hopefully one day we can meet.
the earlier post was posted by me, not danny. woops.
I know you already know this...but this is a MIRACLE. We have all witnessed a MIRACLE unfold before our eyes. I am sure that every person that has viewed your story or knows about Gracie has had an increasing of faith in their lives. I would be interested to know the Dr.'s perspective on her recovery??? Are they as amazed as the rest of us? It sounds like Gracie has pretty much beaten all odds against her!
Well said, Michele. I am so happy for baby Gracie and how well she's doing. Hang in there...love ya! Lisa Loeffler
We feel so blessed to have been able to peek into your lives and this amazing miracle. Thank you for sharing your inspired thoughts and your beautiful baby girl with so many of us who have grown to love her. We will continue to pray for her continued recovery.
Ben and Robbie Andersen
(Trey's mom- HLHS)
Your attitude is so amazing and such an example to us all! I can't even imagine how hard it must be for you to not be able to hold your sweet little baby girl!
I remember posting a week and a half ago that 'I believe in miracles.' At that time I wasn't too sure what that miracle would be for little Gracie. With all my heart I wanted her to be on this earth to spend more time with her family. I'm so grateful all of our prayers have been answered in this way. I hope you have many more happy special days with your beautiful sweet baby girl. Each day with all of our children is truly a gift! Thanks Gracie for the reminder!
Love, Kim
Tom and Michele
Go forward this day and enjoy every minute you are with Gracie Jean. She is a sweet angel sent here on earth to teach all of us many lessons.
We Love our Gracie
Grandpa Gledhill
When my daughter and Tom first heard the heartbreaking news about their yet to be born little girl they stopped, took a painful breath, and began researching everything they could find on this subject, which helped established their blog for which we all are so grateful. They were prepared for just about everything except a successful operation that crashed eight hours later turning the odds of survival against them. Through discouragement and a natural loss of hope they shared with us the tender feelings that were overwhelming them. In my 65 years I’ve never read anything where such pure love of a child came through with so much feeling. Their messages were gifted and inspired to the point where all of us, to include total strangers, couldn’t escape this struggle for life once we were exposed to it. Gracie, your struggle for survival has brought renewed life to hundreds you may never know. Whether we haven’t prayed in years or pray each day, this one valiant little fighter has united us in ways difficult to express but probably understood by all. You are a gift to us all Gracie and your parents are painting a loving picture none of us will ever forget. Love, Grandpa Snow
I don't think anyone could have said it any better! Wow, how true. I am one of the strangers whose live your sweet baby has permanently touched.Thanks!
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