We have a love/hate relationship with ECMO. It is keeping her alive and giving her body a chance to rest but it is also causing her some serious complications with her bleeding. When you have so many tubes in your body, the body naturally want to make clots to fight against the foreign objects. To combat this, they have to 'heparinize' her blood (make it thinner) and in doing so, she bleeds a lot heavier and easier. I took this picture this morning.......like deja vu from our last go around. When babies are on ECMO they give them a paralytic so they cannot move at all. So she is completely out on some heavy drugs. It doesn't feel like I am with my Gracie, not the Gracie I know. She lays there non-responsive in a coma like state. It is really hard to go from holding your baby whenever you want at home, to petting your child on the head and holding their hand or rubbing her foot. They don't have many plans for her today. We are still just watching and waiting. Our nurse said that when she was changing her chest dressings she thought she saw slight movement of the heart which is an improvement from yesterday when there was no movement. Her bleeding has slowed down a little from yesterday due to some special drugs that are helping her with that.
Waiting and watching.......that's what we are doing right now. Thank you for all of your prayers.
96 comments:
Isn't waiting sometimes the hardest? Keep fighting Graice! Many are praying for you!
Hey! It looks like you are in our old PICU room. It's a lucky one so just hang on Gracie, it'll bring you some LUCK!!!
Though we've never met, we want you to know that your sweet little Gracie and your family are in our prayers.
Our heartfelt prayers are being sent to your family! Michele, Tom, Max, Taylor and Callie - How courageous and brave you all are. And Gracie - How strong and resilient. Peace be with you!
Thanks for the update. I just couldn't get home from work fast enough to check your blog. Hang in there. Our love and prayers continue to be with you.
Oh, it breaks my heart to see a photo of Gracie like this again. I am so sorry that you can't hold her and comfort her and snuggle with her, but remember she likes to just be left alone anyway. I'm amazed at the incredible medical technology and the knowledge of the medical teams that are keeping her alive. It takes time for Gracie to work out all the details of her miracles, but it will happen. Her guardian angels are working overtime right now.
Love you guys!
Wow, your counter went up 300 hits in under a half hour! So many people are pulling for you Gracie. Hang in there sweet girl!!
So hard to see her like this again...bless her heart.
Aren't we thankful for doctors and nurses who know what all that "stuff" is and what to do with it!! Brings backs LOTS of memories looking at that picture! Stay strong, many are cheering your sweet family on. I think about you all non-stop...and I've never even met you!
So glad for an update. My heart aches for you to see your baby like this. She will heal, it just takes so long and so much patience, keep going, keep high spirits. I was a pediatric nurse before having children, I have seen miracles, amazing miracles, they ahppen everyday. I am one of your fans. Talk to your sweet baby, sing to her I know she can hear you and it will bring much comfort to her. You are so strong and so is Gracie. I don't know you but it feels as if I have known you forver, angels are so near you and your baby girl.
I've been checking in all day. Thanks so much for the update. Prayers continue.
Bless your hearts! It breaks mine to see you all go through this. Still praying for sweet Gracie and your family! Stay strong, God will protect her.
Many Blessings,Crystal
(another heart mommy)
Michelle, I don't know if you will remember me, I worked with you at Allstate. My sis-in-law Shelli Hatt told me she ran into you a little over a week ago at PMCH and told me of your situation. I have been following your blog ever since. I am truly sorry that your family has had to go through this, I can only imagine what it is like to go through this day after day, month after month, I am glad that you and your family can feels the strength of so many people that are pulling for you. mya you contine to feel the love and prayers from all your friends, even your old lost friends at Allstate. God Bless and may you feel the comfort that our Heavenly Father knows what is best for all.
Oh. To see Gracie like that again is so hard. I am so so sorry. Please know that we are still hoping and praying. And like others have said - bless her heart. I am sure she has angels surrounding her right now . . . and you do as well.
Love you!!
Michele and Tom, It was so nice to hear from you both! Michele, my heart was so heavy for you yesterday - it lifted today to hear from you. We want to help take away your sorrow and help you be stronger, but really I think, well I know, that you two are the strongest ones. I am beginning to gain a much greater appreciation and understanding of the emotion and power of Hope - with the Savior Jesus Christ in our lives, there is always hope! Hoping today brings more hope for tommorrow!
My family (total strangers!) is praying SO hard for Gracie! Even my 2 year old is saying, "God Bless Gracie!" You are in our thoughts....
You don't know me, but I found your blog through baby Mia's...and they don't know me either, but I have a certain pull towards these little 'fighter babies'. I lost my first-born 5 years ago (due to completely different circumstances that you and your family are in) and as I read your posts, it all comes back to me. I only read down 4 or 5 of them, but already I am amazed. Amazed at the way Gracie is holding on, but more amazed at the strength You & your husband are showing through all of this. I pray that Gracie gets to stay on this earth with you, but if it doesn't work out that way, and she is called home, what a special girl! I hope that doesn't sound terrible...but one of my greatest strengths in living without my child for a bit, is knowing that he was too wonderful to stay here. You are all in my prayers, Gracie is beautiful!
Your daughter is beautiful! I can't imagine your pain watching her like this but we know (and boy has she proven it) that she is a fighter and she can overcome this! We are praying fervently for her full recovery...with this heart or a new one. Your baby girl is touching our hearts.
Love to you~ Rebecca
God is good and gracious. May He bless you with peace as you wait for your Gracie girl to heal.
JT in SC
Please sing "You are my sunshine to Gracie from all of us.
She truly is "Amazing Grace".
I found your blog through Bethany Keisler as she asked her readers to pray for your family. She is a dear friend of mine so I clicked on Gracie's picture and immediately my heart ached for your situation. I was even more drawn to you as I scrolled down and saw a picture of the temple. My baby was born with problems too and we spent 5 weeks in the NICU, all the time leaning on support from all over the place. Tomorrow is our ward temple night-please know that Gracie's name will be in the Birmingham Alabama temple and I will think of her specifically as I am there. May you feel the tender mercies of the Lord.
Hang in there! Gracie is such a strong little spirit and if anyone can make it through all of this it is her! Keep praying and we will be doing the same! I hope that you and your family can feel all the many prayers that are being sent in your direction and that they give you some measure of peace.
Praying, Praying, Praying! Go Gracie Girl!
So I know I've already commented today....BUT, can you believe that Gracie song on Paul Cardall's blog. WOW....I think that should be your new main song for Gracie's blog! Amazing! Im praying for both Gracie and him...I too played Paul's music at my son's bedside 24/7 during his 3 open heart surgeries. I think I drove the nurses crazy making sure it was ALWAYS on. AMAZING how it calmed him during his roughest days/nights. He had heard it all during my pregancy,so it was something familiar to him. I have loved Paul's music since before I was even married and had kids, I never dreamed how it would affect my life!!
That's a hard picture to see. I hope and pray things continue to get better for Gracie - either with this heart or a new one. I hope you and Tom can feel all of the love and prayers coming your way. I'm sure this cruel waiting game is incredibly stressful - Hang in there!!!
Still praying!!!
Nat, Alan and kids
Waiting is okay because it means there is still hope and we are all still pulling for little Gracie. It is so hard to see the picture with all those machines but also know that it is worth it if it provides her the chance to heal and allow her miracle to happen. May you and Tom have peace and hope as you continue to wait.
I too hated ECMO and everything that came with it but thankfully it's there! I think of you and your girlie constantly. Wishing for only the best, God speed!!
praying for you.. I know you dont know us, but my little one was on ECMo for 2 weeks before she got her heart..I know how horrible it is.
http://liliachristinemiraclechild.blogspot.com/
I was lead to your blog through a prayer chain. I was curious to see who I was praying for. Sorry for being so noisy!!. Your daughter is so beautiful.
Our family has been dealing with HLHS for quite some time. Our foster son has it and recently had the Fontane procedure. He had the Glenn about 2 1/2 yrs ago. His surgeries have gone fairly well but there are still some problems. Due to the lack of care from his bio mom (not following up with meds) Johnathans heart has become enlarged and is slowly hardening.
We have been through so much with this little guy and we recently found out that he will be in need of a heart transplant but due to his other medical issues we cannot get him on the list. Its hard to watch him deteriorate. We love him so much. We struggle with anger that this mother put him through more than just a broken heart.
I pray that your daughter will be the miracle that we all hope and pray for. Your love for her will be the healing she needs
To see pictures of our little guy click on the link below.
With love
Jenny
http://nelsonfamilykids.blogspot.com/2008/12/johnathans-surgery.html
Hi!
You don't know me, but I'm in Tiffany's Ward, and have been following your story and praying my heart out for sweet little Gracie! I know what you're going through with ECMO. My daughter was on ECMO 15 1/2 years ago, though her situation was very different from Gracie's. Looking at the pictures of all the tubes brings back so many memories. Mackenzy survived but that's a whole other story! My heart breaks for you and what you're going through! Hang in there! Here's a quote that has given me a lot of strength and comfort:
"No pain that we suffer is wasted. It ministers to our education, to the development of patience, faith, fortitude and humility. All that we suffer, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of God, and it is through sorrow and suffering, toil and tribulation, that we gain the education that we came here to acquire and which will make us more like our Father and Mother in heaven."-Orson F. Whitney
God bless you!!!
and so, friends and strangers a like, unite to wait with you... in thoughts, prayers and expressions.
God will continue to bless you precious Gracie and family...
Dear Gledhill Family,
You don't know me either (seems there are a lot of us!) My husband was in Michelle's ward Freshman year at the Y and, having gotten back in touch with several friends from that time (gotta love Facebook), he was told of Gracie's blog, shared it with me and we have been reading it regularly since. I just wanted to let you know, as others have done before me, that more people than you even realize are praying for you and for Gracie - people you don't even know. We wish you the best and will keep Gracie in our prayers.
-Amy Nielson
What can I say? I dont know your family. I got an email from a friend of a friend who asked to check out your blog and pray for your baby and family. I am sitting here bawling as I type this. My heart is aching for all your Gracies suffering, for the pulling down this must be doing on your family and friends as well. It touches me deeply as a have children of my own. 3 year old boy, 1 year old girl and any day a new one to join our lives. I will pray for you, I am silently praying now. Keep up the faith, as the Lord will give you the ultimate strength. Love from my way. : ) P.S Is there any thing your family needs? Is there a way to send a little gift to Gracie? My email is luvsandlife@gmail.com
I linked over to Paul Cardall's blog and listened to the Gracie Girl song...Wow!!! All of his songs for Gracie were beautiful and inspired. What an amazing man he is! It makes me smile to think Gracie is listening to that Gracie Girl song. A tender mercy!!!
Oh sweet girl! I too am glad for the amazing technology. Praying, Praying, Praying for another miracle. Hang in there. You guys are seriously so AMAZING!!
You don't know me; I found the link to your blog on another blog where there was a request for prayers for Gracie. I just want you to know that Gracie and your family are in our prayers. Gracie is just beautiful :)
I found your blog through Lindsay Dean's blog. I just wanted you to know that my family is praying for your little girl. Our little girl Lindsay was on ECMO for 33 days at Boston Children's hospital. She was on the heart transplant list as well. The day before she was to get the Berlin Heart in the Lord took her home. We know all to well the feelings you are all going through. To see your baby like this is a hard thing to do. But hang on to Jesus and He will get you through this. If we didn't know Him we would have never made it through our time in the hospital. Stay strong and hold on to each and hold on to Jesus. Again we will be lifting Gracie up before the throne. This is our Lindsay's blog;http://lindsaykeswick.blogspot.com.
Love,
Laura Groen
Nothing to say but we love you and Gracie and are still fighting, hoping, and praying right along with you.
ECMO...ECMO...ECMO...WHY?.WHY?..WHY? It's so difficult to answer that question. I don't think there is an answer. At least that we know of yet. We do know that Gracie is one special baby. She pulls a rabbit out the hat when you least expect it. If anyone can make that heart beat, it's Gracie! It is giving me so much hope that the nurse may have seen it beating. Her chances of survival were about 0% last time. So 10% is awesome. She can totally work with that! There is always hope with the Geeg.
I felt very inspired today to put your sweet families name in the Idaho Falls Temple, there is no better place for your names to be. We are still praying for you ♥
I can not imagine what you are going through. I look at that picture through tears. We are saying lots of prayers for Gracie and your family..
I love her name on her bed..it is a personal touch and shows everyone who she is!!
Hugs
The waiting is so difficult and I know it is a struggle. Michele I am sending huge hugs for you this day-another day of waiting and wondering. I am so sorry for the things you are having to endure-still praying for you and Gracie every minute of the day:) Much love to you!!!
Well, it is comforting to know that the Dr's are able to relax little Gracie. I can't help but think that she is being comforted through sight and ears by her angels from the other side. I am sure this is a special time for Gracie to be able to communicate with the many friends she has that we can't see. Our prayers are with you!
Hang on Gracie... we are all pulling for you... and praying with all of our hearts.
Hi this jaxson smith and I hope she feels better!!!!! our family is praying for her!!! I know she and your family are going throw this hard prossece.I know she will
survive throw this and will be with your family forever on!!!
I know she has lots of friends right now at this moment!!!!
love jaxson!!
Just discovered your blog! I will pray for little Gracie! I read about your daughter teething and had to laugh. My son got his 1st tooth at 13 months. He is now 8 1/2 and has only lost 1 tooth so far!
Dear New Heart of Gracie~ Pump baby Pump!!!!!!!!! We are praying so hard for all of you. Holding you so close to our hearts......
Love, Suzie and Lindsay
I have been following your story since it all began (I stumbled across your blog from a friend's blog). Anyway, I am in awe of your strength right now. I don't know how you all do it. Reading what you are going through each day makes me appreciate my children all the more and makes me appreciate all the small things in life. Please know that you are in our thoughts and prayers. We hope you feel a sense of peace as you wait to see what the Lord has in store for your sweet baby. We are pulling for her. Thank you for allowing her to touch so many lives by sharing her journey.
You don't know me but I have been following Gracie's story for quite a while. I just wanted to let you know that I was in the Salt Lake Temple tonight and put everyone in your family on the prayer roll. I hope and pray that everything goes well with your beautiful Gracie.
We're watching and waiting too. Hoping and praying for a miracle. That ECMO machine is a miracle in itself.
Oh miss Gracie we pray! With all our might we pray! Love, hugs, and powerful heart prayers, and a few tears of course..., Sundie (Sydnie's mommy - hrhs)
My prayers are with you and your entire family, most especially your precious Gracie. May Our Heavenly Father sustain you all.
from,
another graci
Continuing to pray for Gracie and your family. I tell you until I got started blogging I never knew that someone I had never met could touch my heart. Your little girl is precious and I pray that her existing heart will begin working for her the way it needs to!
Gracie is weighing so heavily on my mind. I pray the morning sun will bring good news.
Sleep well in God's trust.
You don't know me, I just want you to know that you have been in my thoughts and prayers all day! May the Lord bless your sweet gracie and your family as well! Lots of love and prayers, Kelsi
I just came across your blog via Twitter. I'm crying. But amazed by your strength, faith and composure. I will keep you and your 'sweet heart' in my prayers tonight and always.
Sorry that I haven't ever posted. We follow your blog religiously and pray even more fervently for your family. Our boys do not miss a chance to pray for "Baby Gracie". May the Lord continue to bless your family with comfort and strength. You are quite the amazing family. We are blessed by your strength and testimonies. We will continue to pray and have faith as you do!! We love you!!
Bryce and Holly Doman Family
Continually in my thoughts and prayers. My kids and I watch several times a day for updates. WE love your family so much, and know that Heavenly Father is watching over you.
More prayers coming your way.....
I came to your blog through A Daily Scoop. I have no understanding about what you are going through but I will keep you in my thoughts. You have a beautiful family and your adorable little Gracie and your family are in my prayers. Colleen
I came to your blog through A Daily Scoop. I have no understanding about what you are going through but I will keep you in my thoughts. You have a beautiful family and your adorable little Gracie and your family are in my prayers. Colleen
While I am no stranger to seeing these machines, I have never seen so many at one time. Honestly, it looks like something out of a sci-fi movie. Know that she is in our hearts and prayers. Our family it rooting for Gracie Girl!!!!
So the music on Gracie’s blog did me in. I can’t keep from crying & I can’t keep from writing this. I just want you to know what an inspiration Gracie’s story has been to me. And what an inspiration your love & Tom’s love for your daughter has been to me. I hope you can see what truly AMAZING AMAZING people you all are. Each time I live a moment in your story – I can’t explain it, it feels like a small piece of Heaven on Earth. Your faith, your love, your commitment to this precious baby that God has entrusted in your care is astounding. It all gives ME strength. I know that when I go through trials in my life in the future, I will think of Gracie’s story. I will draw upon the faith & the strength that I see in you, in Tom & especially in your beautiful daughter. It has changed me as a person. I’m pulling for you all, I pray for you all & I think about you often.
-- Lisa Stucki
What happened to the Angel Tree post? I thought it was a great idea! If you're still doing it let me know. We continue to pray for all of you!
Sweet baby girl. My boy will be one on March 5th, so it sounds like they are about the same age. You are in my prayers. Love to you.
We are praying for Gracie. Even in times of such great adversity it never ceases to amaze me how strong these sweet little HLHS babies are. She is a darling little girl with a powerful spirit that has touched countless lives.
All the best for your little angel.
Sending our thoughts, prayers, and hugs your way...
Love,
Katie, Maddie & boys
I just heard of your family's challenge and it breaks my heart.. while I know we have a loving, merciful, all-knowing Heavenly Father, it is hard to see a little one going through this.. my baby just turned one. My prayers are with her, you and your family, and her doctors and nurses. We are so blessed to have Primary's!!
We are thinking of you baby girl. You are in our prayers everyday. Keep fighting!
Still praying hard for you all! We love your little Gracie too :)
What can I say that hasn't already been said? You don't know me. I am Stephanie Adair's sister and I am so emotionally involved in Gracie's fight. I couldn't help myself but to get on here and tell you that I think she will make it. I feel it so strongly. the prayers on her behalf are endless and so strong. You are amazing. Gracie will pull through and be the bright light she was always meant to be.
Hi guys, it's been a few days since I've checked the blog - we've still been praying for a new heart for Gracie and it looks like in a roundabout way that's what she may need again. I can't believe the ups and downs in only a few days...and that MACHINE again. I can only read when my little one is sleeping b/c I bawl so much reading what Gracie and your family are going through, and yet, I have no clue what you must be going through, and what the kids are going through. Our family prays for Gracie every night and we will continue to do so. We love you guys, and hope for the best outcome. Hang in there Gracie, keep fighting baby girl!
Glod Bless your precious baby girl. You are all in my prayers.
Praying for Gracie at our house:) We pray for your family as well..
Love the P. family
Hi, I came across your blog from Maddie Allred's and Steve Catoe's blogs. Our son, Colby, has Tricuspid Atresia and Hypoplastic Right Heart. I want you to know that your sweet precious Gracie and your entire family are in our prayers during this extremely diffiult time. It looks like you have a lot of people praying, which is wonderful!!! Prayer is the best medicine at this point...God is with her and you always!! Hang in there.
Our prayers are with you. I've been following little Gracie from Tiffany's blog. May you feel comfort and strength during these uncertain times.
You are in our prayers! What a trying time. I know that Heavenly Father and all the angels that can are watching over your sweet little girl and your other children! We put all our faith and prayers in your behalf!
I am just another person that you don't know, but I have thought about you for several weeks since coming across Gracie's blog. I have said many prayers for her and your family's behalf. One of the blessings of the gospel is knowing that even though we may not know each other or others that have posted comments for your family in this life, we did in our pre-earth life. So we are like one huge family all praying for your little angel. I came across two scriptures this morning that made me think of Gracie and your family that I wanted to share. It is 2 Nephi 4:20. It says "My God hath been my support; he hath led me through mine afflictions..." Also, 1 Nephi 11:17. To me, it means that even though we don't understand why, we can know He ALWAYS loves us. May God continue giving you strength and comfort and I will continue to pray.
Stephanie
I too have been following your story thru my cousins blog (Matt and Mindi Cox, with baby McKay) and I am amazed and touched by your faith. You are a testimony to me. Makes me realize how blessed we all are. Thanks for sharing this story. I check for updates often, and find it so great that so many people you don't even know are watching and praying for all of you daily. Including me. That baby girl is so beautiful. You are all in my prayers.
I heard about your blog from another and wanted to let you know I am praying for all of you!
I'm Trey Andersen's (HLHS link on your sidbar) aunt and I started following your blog a while back. I have never prayed so hard for a family I have never met...but how can I not! You're little Gracie melts my heart. You are all in my thought and prayers!
There is a family in St. Louis praying for Gracie! We check the blog often and celebrate the steps forward and mourn the setbacks. I hope you can find comfort knowing so many prayers are being offered in so many places and in so many temples!
found your blog through A Daily Scoop. I am praying for Gracie and your family. She is so beautiful.
We are still praying for Gracie and your family. May you feel the arms of God around you and know that Gracie does.
It is amazing how many lives this precious little baby has touched. We will continue praying for Gracie Girl and your family.
Found your blog through the Waite's "A Daily Scoop". I am in tears reading about the last few days and listening to the beautiful music on your blog. Gracie is such a precious little girl, and I will be praying for her and your family. I know Heavenly Father is watching over you all.
Bless your darling family! We have been checking your blog everyday and keeping you all in our prayers!
The Pepper Family
(friends of the Cox family)
All our prayers. Your family and little Gracie is such an example to all!!
There are so many people praying for your family. I just wanted to add my well wishes. I know the Lord is watching over you and will help you through this hard time. thank you for sharing this part of your lives with us. Hang in there!
Hi Michele- I have had a few people email me and ask if there is anything they can do for your family. Please know that there are so many people praying for Gracie girl. All the feelings of desperation come rushing back when I see that picture of her. I am thinking about you and Gracie nonstop. She is fighter- this we know!
I have been touched by your story and am praying for precious Gracie.
I am thinking of you today and you and your sweet baby Gracie are in my prayers.
Just checking back to see if there is any good news to celebrate... still hoping and praying.... I am amazed (but not surprised) by how many fans Gracie has. What a girl.
In the midst of all the exuipment is a little tiny Princess!
You are in our prayers...
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