Well, I can't believe that we have gone through all that we have and now we are at a crossroads. Gracie's pressures came back even higher than last time. Dr. Cowley said that they would discuss Gracie in tomorrow morning's meeting but that it is not looking like she is a good candidate for the Glenn surgery.
The Glenn makes the pressures that they measured, even higher which is why it would put Gracie at such a high risk. I asked him if they had ever done the Glenn on a baby with pressures that high and he said he could not think of one.
He said we basically have four options:
1. Take her home and stop doing anything invasive and let her be in peace until she fails.
2. Do an operation (with a really long name) where they put a fistula? in through the arm down to the heart which would only buy her some more time on earth.
3. Do the Glenn even though it is extremely high risk.
4. Heart transplant, which she may not even be a candidate for. (Candidates have to go through a lot of testing to see if they are even eligible.)
So, we are now just waiting for them to call us into the recovery room so we can see her. They are going to keep her overnight for observation.
Thanks to everyone for keeping us in your prayers. I will update when I hear any new information.
49 comments:
Michele,
My heart is breaking for you. These are decisions no one should have to make. I know you will be guided to do the right thing for Gracie. I jsut can't help but feel that she has more to do. Our thoughts are with you.
Mindi
I am friends with Mindi Cox and just happened to look at your blog today. I am so sorry that you are going through this difficult time. I will say a prayer or two for you and that sweet little girl. Amazing how complete strangers can have such an impact on our lives. Stay strong and we will be thinking of you.
Marshelle
We are thinking of your family!
Oh Michelle and Tom.... I'm sorry that you have to be faced with this type of decision. I hope that the doctors can come together and form some strong opinions as to what you should do because nobody should be faced with a decision like this! We'll keep praying for you two and Gracie.
Gracie has made it this far for a reason. She is the miracle girl. She has enough people praying for her, whatever is best will happen. Only one Person knows what that is. Our hearts feel as broken as Gracie's. We will continue to pray and fast for you and little GG.
Oh MIchelle and Tom, I am so so sorry! I can not stop crying right now. I could not believe even the title of your post! I started crying before I even read past the title. I wish I were there to hug you and let you know how much we love you. We will continue to pray for a miracle. May the Doctors be inspired tomorrow to know the best for your sweet, beautiful Gracie. May our dear Heavenly Father comfort you this night.
With Love Sincerely,
Summer, Mason's Mommy
Tom and Michele:
You will do what is right for Gracie, you always have. I am praying for you two and for our Gracie girl.
Gary
This girl has seen miracles before, will will keep hoping and praying for another one! We love you guys and are so sorry that you have to go through this. I'm just so sorry...
Love,
Tiff
I am so very sorry! I know that Heavenly Father will continue to guide you and the doctors. I pray that you may find peace and guidence through the spirit and love of our Father in Heaven. We are thinking of you and will continue our prayers for your family and litte Gracie.
With Hope, Faith and Love,
Shauntelle and Kaidence
My name is Breanne. I have been following Gracie's journey from the beginning. I am friend's with Brytt and Ryan "Teagan's mom and dad". I just wanted to say that I have fallen in love with your little Gracie Girl!! She is such a doll!! And I know that Heavenly Father has big plans for her in this life or the next. She has the most wonderful parents and she is loved so much!! May the Comforter be with you and help guide you with these hard decisions.
Hugs,
Breanne
I am so sorry! My heart just dropped reading this post. I know with the doctor's help and a lot of prayer you will know what is the best thing to do for Gracie and be guided in the best direction. We are sending lots of prayers and love your way!
We are so sorry to hear about Gracie...she has been such a little trooper! Our thoughts and prayers are with you and your family during this difficult time. We echo what everyone else has said...you have some very wise and wonderful family and friends. We love you all! Dave, Lisa and fam
This is such a hard choice to be placed with. I hate to be given choices like this. They truly are choices that should never be placed before parents. We know it is hard, and we really just want you to know how amazing little Gracie is (it must be the name!) We pray that her story ends happily, and that the doctors will be inspired to know what to do.
Heart hugs and prayers,
Emily
Sure don't know what to say! Please know that we are thinking of you and praying for Gracie, your family, and the doctors.
I remember reading your blog last year when there were times that it didn't seem like Gracie would be here another day, but she proved everyone wrong. She is so strong. She's already had an amazing journey and touched more people than most do in a life time. We'll be praying for you all!!!
Oh Michele,
I can't believe it. I've been gone all day and have had nothing but Gracie on my mind the whole time. She has gone through so much already and defied all odds. She can do it again. I too will be praying for inspiration to flow through the doctor's minds and that you and Tom will be strengthened and feel at peace with whatever decision you make. We love you all so much---hope you can feel a big hug from us.
Brendan and Leslie
Hi, I'm mom to Mary Clare (HLHS baby girl, 20 months old) I remember reading and crying and following Gracie's blog when she was born. I have since been checking in on her and your sweet family. My heart aches for you now. She will be in my constant thoughts and prayers.
I am so sorry. You are both in my prayers. So...so...sorry.... but don't give up. Gracie is a strong little fighter and many are praying for your little darling.
I am SO sorry!! I know first hand how aweful it is to get that kind of news. We are praying for you and the dr.'s tomorrow as they make a decision. Hopefully she will qualify for transplant and not have sensitized antibody issues. I don't know if you read Lindsay's blog or not... but they had the exact same issue with the GLenn... tried it and then had to take it down and list her for a heart.
Thinking of you tonight!!
Andrea
I will be praying for guidance for the doctors and your family as you are faced with these incredibly tough decisions. I am sure you will guided to the best choice for your sweet Gracie Girl.
Hugs & Prayers,
Christina
Tom and Michele
So, so, sorry to hear your news. Our hearts go out to you and your family. May the Lord bless you with inspiration and peace in the up coming days as you are faced with such a difficult decision. We love you and wish there was more we could do...Please know that we are praying for you.
Love,
The Blackhams
We'll be thinking and praying for your family and your sweet sweet Gracie.
I was so surprised to read this - what a turn of events. So much has already been said, but I wanted you to know how much we love you and are thinking about you right now. We know you will make the decision that is right for Gracie. You are such amazing parents, and she is as blessed to have you and you are her. Love you!!
We are so sorry about this sad news. We will be praying for your family and the doctors in the upcoming days and weeks. We know you will be led by the Lord. You guys are amazing. All our love.
I am SO SO sorry that you received only bad and scary news. I am praying for another, better option for Gracie.
Oh what an awful decision to be placed with! Our hearts break for you and Gracie is in our prayers and in our minds tonight. We will also pray that you and Tom can be at peace to consult with doctors who will be guided in their decisions. Heart hugs to you guys!
Alli (soon to be mom to Grant- HLHS)
I've got chills thinking of all the times Gracie beat the odds and did things that were medically impossible. That girl is amazing, and it is very obvious that she has been in Heavenly Father's hands. No doubt that he is mindful of her now; he has preserved her life for this long. We will pray for you and the doctors that you will be able to make the best decision for little Gracie.
Love, Robbie (Trey's mom)
What a difficult decision you and Tom have to make. Gracie has brought so much joy to you and your other children. Natalie has often told me the loving spirit she felt from her time with precious Gracie. Know that you are in my thoughts. Beautiful Gracie and your family have inspired me with your strength, faith, and resilance. An experience like you have gone through during the last year definitely puts into perspective what matters in this life. So many things in our lives are trivial and not worthy of the time we give to them. Your friends and family have given so freely of their time and means by doing acts of goodness to help lift the heavy burden in your family.
Oh man, I am sorry. This news is very hard. I am hoping for you!
I was almost too scared to read on after I read the title. I am not sure what to say but I can assure you that Gracie is in MANY prayers tonight. Like (I think it is your sister) said, she has made it this far for a reason. She is a fighter. We will also be praying for the doctors to have wisdom to know what to do. My heart sunk when I read it first but then I quickly realized that I need to have faith and I do! Hang in there and kiss Gracie girl for us all.
Tom and Michele,
This is the first time I have commented on Gracie's blog, but I feel prompted to write now. I have been following Gracie since she and this blog were born. I "watched" with baited breath in the very beginning when you were so afraid you would lose her, and knowing exactly what you were going through, was absolutely overjoyed when she pulled through and came home!
My daughter Tera was also born with severe congenital heart defects, similar to HLHS, and after her first stage surgery and subsequent cardiac cath, she passed away at 2 weeks old. I fully understand your crushing disappointment and heartwrenching pain and am so very sorry for this turn of events.
However, almost 8 years later, I can't even express how much faith I have that Gracie's plan on this earth, as well as yours and Max's and Taylor's and Callie's, are all in the Lord's hands. I fully realize that this FEELS like little comfort when you're faced with the prospect of losing your time on this earth with one of your children... we have such limited vision and no matter how faithful we may be, it is impossible to not feel utter despair... but from the other end of this trial, I have such an overwhelming need now to convey my testimony that everything will be according to the Lord's plan.
I often pray for Gracie, for your family, and for you especially, Michele... and I will fast and pray with added fervor that you will get your miracle.
With much love,
Leslie
Michele, this is the first time I've posted, but I have been reading for a while. Mindi Cox also sent me here and my own heart baby Luna (DORV, dextro) is just about the same exact age as Gracie-she'll be one on March 11th.
I'm so sorry to read this. I'm in shock as well. I'm sure the docs know best, but is there no medicine that can lower the pressures?? Should maybe you get a second opinion? sorry...I'm sure you've explored these avenues...
sending you and your family BIG prayers, and hey, miracles DO happen each and every day!
Sabrina
Please know that even strangers from St. Louis are praying for your little Gracie. I came upon your blog by chance, or maybe it was fate. There are prayers being sent your way from both near and far. We're praying for Gracie and your family!
Gracie is an amazing baby. She has made such an impact on everyone's lives. We hope she continues to make many more miracles.
Just want you to know that we will be adding our faith and prayers to those of many, many others. May you be guided and comforted in these coming days.
I have tears and I don't know what to say. Gracie is already a miracle and there is a plan for her and your family. You'll be in our thoughts and prayers as you make this difficult choice.
Love, Kim
I haven't had time to sit down and look at blogs lately but I have been thinking a lot about you and Gracie and have been wanting to give you a call! Now I know why! We will keep Gracie and your family in our prayers!
Love, Kristin
Michelle and Tom, many tears and prayers are flowing for you at this time. May the Lord comfort you and carry you through this difficult process. Lovingly, Teri Nickel
I know that with the power of prayer and the blessings of the priesthood you will know what to do.
Prayers & Hugs
Praying for you all today...What difficult news to hear. I'm keeping you in my thoughts and Miss Gracie is close to my heart.
Love and hugs,
Katie (Maddie's mom)
There's GOT to be another miracle in store for Gracie...just has to be. We'll be praying for her...
Tami
Gracie is constantly in our thoughts and prayers. Our kids even know who she is even though they have never met her. Please let us know if we can do anything to help.
My prayers are with you, my son Braeden had very high pressures before his Hemi-fontan(Glen)and although it was quite rocky after his surgery, he came through it alright. I realize ofcourse that every case is different. We will continue to lift Gracie up in our prayers.
~Stephanie(mommy to Braeden HLHS)
http://braedensheartjourney.blogspot.com/
I just want you to know that my thoughts and prayers are with your family at this incredible hard time and crossroads.
Heart Hugs,
Carolyn Quigley
President, IHH
I'm at a loss of words. I'm so sorry you have this difficult decision in front of you.
Like many others, I feel that The Lord has guided you and watched over you. I know that He will continue to do so. Gracie is a special soul and she has proven to be a fighter and to go against the odds.
We love you all. Our prayers are with you.
Miller family
It is all I can do not to cry. We will be keeping Gracie in our prayers. Tonight we are picking up blankets made by the local HS soccer team for the babies at the Heart Center. We will be thinking of Gracie Girl. Hopefully her pressures will go down.
I have just learned of your little Gracie. I will keep her in my prayers.
Love from mother to mother,
Wendy
I am so sorry Michele that you are faced with this type of decision. I know first hand how very difficult it is and I am sorry. I pray that the Lord will comfort you at this time and that He will guide Gracie's surgical team as they chart her course.
I am thinking of you daily and will continue to pray for you, Gracie and your family.
Love, Keisa
So sorry to hear the bad news. I've been following the blog through your journey and I'll continue to pray for everything to turn out ok.
Michelle Christensen
(Used to work with Tom at Axiom)
Post a Comment