3.19.2008

Trial of Faith

Well, it may not be the answer we were praying for or expecting or wanting, but its another decision we have to make none the less.

We met with a set of cardiologists around 1:45 today. They had had a meeting with the other pediatric cardiologists as well as the surgeons earlier in the afternoon and I guess that after meeting together and going over Grace's condition it was determined that she isn't really a strong candidate for the 3 stage surgeries anymore.

The reason for this is because Hypoplastic Left Heart Syndrome is of course meaning that the left side of her heart is underdeveloped, therefore their hope is that the right side will be in perfect working order so it can work hard to support bot sides. However, a very important valve called the Tricuspid valve on the right side of her heart, is also very under developed and malformed.

The surgeons said that they didn't think it would be possible to fix this problem. If they were to continue with the 3 stage surgeries, she would have a 50/50 chance of survival or death. And, even if she survived the first surgery her chances of being a candidate for the other two necessary surgeries would also be very slim.

After the cardiologists explained this to us, they told us that our other 2 options are Comfort Care, which many of you have probably heard about somewhere along the line now. If not, comfort care is just where Topher and I are able to take baby Grace home with us, off of her prostaglandin medication, but we are doing so knowing full well that she may only survive a few days or weeks.

Topher and I have never been a big fan of that option, so, on to the next...

They mentioned that because she is no longer a real candidate for the surgeries anymore, she can be considered for Transplantation.

To get a heart through the Transplant system can take anywhere from a month to longer than 5 or 6 months. Also, there is always the risk of the body rejecting the new heart. The heart would only last 10 or 15 years and she would then need another transplant. She has to take medications throughout her whole life to prevent rejection. And of course, what is especially difficult for me, is the thought that someone else's little baby had to die for our little girl to live.

Well, along with this option is the new practice they have called the "Hybrid". This is where they place a shunt in her heart to temporarily allow blood to flow where it needs to, and sometimes because they do this procedure, the baby can come home while it waits for a heart. Sometimes, taking the baby home can put it lower on the list for a transplant, but that has yet to be confirmed.

Anyway....I know that this is a TON of information. As well as VERY overwhelming and possibly not really making sense. I apologize. I'm a little flustered and overwhelmed as well, so I apologize for any incoherence. Topher and I are very confused and sad and just trying to keep up our faith.

We are praying that Heavenly Father will let us know what he has planned for our little girl. We want so much to keep her in our lives, but don't want to be selfish if Heavenly Father needs her back.

Please pray for us to know which direction Heavenly Father would like us to go. Pray for our little girl and pray for the people that are taking care of her. Pray pray pray. Just like you have been. Thank you thank you for your prayers, love, comments and support. They help Topher and I a lot during this tough time.

love you all

-buggy and topher

32 comments:

Super Daysh said...

Don't really know what to say. We love you guys so much and I am just speechless and so sad for you and the struggles you have to go through. I"m so sorry Buggy. I have nothing comforting to say other than that I love you and will do whatever I can to support you through this. Please call me if you need to talk - I will just listen.

Dallin said...

I know you guys have spent a lot of time studying HLHS. The 3-process surgery was certainly the hope of all of us, but the transplant also has a good success rate. I know it's hard to think of another baby dying to provide life to yours, but what a wonderful gift to leave behind for such a short visit to this earth.

We're all praying for baby Grace, and our prayers will continue as our hope shifts to finding a new heart. We love you, and can't wait to see baby Grace (what a beautiful name).

Thoughtful Runner said...

I guess I can only echo what both Dallin and Dacia said - I am totally at a loss of what to say that might help or provide comfort or assurance - other than to let you know we love you...and we love Gracie. And what people bring into our lives will not be diminished by the amount of time it takes them to give us that gift. I also think that there would hardly be a greater gift that someone could give than a heart that would perhaps give someone else life or a better life - when they could no longer live their own. Just know we will continue to have you in our prayers - just like we have done virtually every day that I can remember - and will for every day in the future. We love you! And I love my little granddaughter - and think she is amazing.

Anonymous said...

Your Grandpa and I just spoke. We are very sorry that the original option is no longer available. But, God still has His hand upon Gracey and you all! He is giving other options! Praise God! We are praying for God's wisdom, peace, knowledge, and strength to Gracey, you, the family, and all the surgeons and doctors.

We know it is always hard knowing that a loss of life is necessary for transplantations...but I echo what has already been said about what a beautiful gift to leave before going to spend eternity in Heaven with Jesus and God!!!
God is in control!

The only questions your Grandpa and I had that we are sure you've already asked the surgeons is 1) Is there any data on a ratio of young babies who die and which a heart could be harvested? And, 2) What is the risk factor or ratio on babies for the Hybrid? Is there data on this?

Your Grandpa wishes he could offer more information, but unfortunately, this is so out of his expertise. He is just so proud and honored with both of you through this in making these very hard decisions. Whatever can be done to buy as much time with the excellent care you have there at Primary is ideal, of course. He wants you to know that he is at a conference today and tmro. but if you ever want to talk to him, just call his cell phone....253-576-7870

We will continue to pray for definitive answers, facts, information to all your questions; and guidance from God with a strong peace about all decisions.

We love you all and wish we could be there with you through this.

Words from God to reflect on...
God IS in control! And, He tells us not to worry about things that are out of our control. He WILL open and close doors as He sees fit. Seek Him in all things and He will direct thy path. God loves you!


We love you all!!
xoxoxo

Grandpa Chuck & Donna

Kalani said...

I just want you to know how amazing we think you are. This blog has been great. I hope and pray that you will find comfort in the Lord and know that he loves you and so does everyone else. You are a beautiful family and Heavenly Father will take care of you. I have seen great miracles and experienced them so I am praying that you will get one too.

I am in awe at how very strong you two are and your baby seems amazingly strong. She looks like a fighter. Let me know if I can do anything at all for you.
Kalani

Mythreesons said...

OH little Bug and Toph... I wish I had some words of wisdoms, but there are none. All I know is that I love you three, am praying continually and know that Heavenly Father will guide you to make the right choices for your family. I know He will lift you, calm you, give you assurance, and speak directly to your heart so you will know, without a shadow of a doubt, what you should do. That is the one thing I DO know. I also know that you and Topher and Gracie must be very special for Heavenly Father to think you'll be able to handle this. I know he'll lead you and guide you, even if it is after a trial of your faith (and ours too...). I love you guys so much and hope you know all you need to do is ask and we'll be there for you. And we are always, always praying for you. I love you guys so much and know that there is a light at the end of the tunnel and know that Heavenly Father will guide you there. I just wish it didn't seem so far away sometimes... But I know that Buggy is a fighter and know that Gracie is one, too (you too, Topher... you're just sweeter about it;)) I love you guys.

AJ Finnegan said...

Dear Toph and Buggie and baby Grace,

Like everyone else has said, the only words to be offered right now are that of faith and support. Our prayers will increase, espcially so you two will be guided by the Spirit to know which path to take.

I truly can't imagine what you are feeling right now. I agree with Dallin about the option of another baby's heart. That could be the only solace for a grieving mother, to know that the loss of her own baby could give another child the gift of life.

We have absolute faith that the Lord will guide you in your decisions. And I pray so much that little Grace will grow stronger and stronger. She is absolutely precious. I love my sweet little great-neice.

Love Amy

Misty Sanchez said...

Tohper and Alysia--

I start out by apologizing for the length of this post. I haven't told anyone how I feel about anything in a long time and it is something that I need to do.

I have found Gracey's birth an especially trying experience for me. I haven't wanted to post any comments until now because--quite frankly I didn't want anyone else to see how I was feeling. I choose to post now because I hope to express my emotions in a way that might bring a little peace to both of you as well as myself.

Before Helaman was born I was very worried about how I should act around you when it came time for Grace to be born. I wasn't sure how you would react to me giving birth to a beautiful healthy baby and you with the possibility of never bringing your baby home. After Helaman died a large portion of my worries were turned towards how I would react to Grace's birth.

Many nights I have layed awake wishing that Helaman would have been able to look at me--just once before he died--that I could have held him in my arms just once and have him look at me and know that I was his mother. He never saw me before he died and the fact that he will have no memory from him earthly life of my face has been very difficult for me to deal with.

I have been strangly jealous of the experiences you have had so far with Grace. You have heard her cry--you have held her in your arms--and you have been able to tell her you love her while she can actually hear you.

Everyone that has experienced the loss of a child will say that their particular experience was the most difficult way to lose a child but I strongly believe that there are 2 truths to losing a child: the first is that the more time you have with a child the harder it is to let them go; the second is that the more happy memories you have with your child the easier the healing process will be. I hope and pray with every once of my being that you two will not have to experience the loss of a child. With God all things are possible and I (along with 100's of others) are begging Him to allow Grace to stay here with you. But if in the end her mission is not here--I pray that the Lord will bless you both with the ability to cherish every moment you have with her...though it will undoubtly make it much more difficult in the end to let her go--I pray that you will not let yourselves be afraid to open your entire heart to her and become attached to her and love her WITHOUT RESERVATION of soon losing her.

As for feeling pain for the loss of another parent's child to provide a heart transplant for Gracey--don't. Coming from a mother who has recently lost her baby I can promise you that giving your baby's heart so another might live is a huge blessing. Knowing that somewhere a mother will be able to hold her baby and watch it take it's first steps because of your baby's selfless act is a way of finding peace with your own precious baby's death.

Alysia and Topher, I love you both and though I know our situations are very different I hope that you will be open to sharing your experiences--good or bad--with me and allow me to share mine with you.

I love Grace. She is the closest that I have to a child of me own and I plead with the Lord to allow her to stay here with us. He is watching over Gracie and loves her--as He loves you. I know that whatever situation a child is in the Lord will never take a child away from it's parents unless there is no other person who can fill their mission in heaven. The Lord will make it possible for Grace to live no matter how small her heart is.

With love and the tender feeling of a new mother...

Misty Sanchez

princess jen said...

Misty,
That touched my heart so deeply. Thank you for sharing your thoughts and emotions so freely.

AJ Finnegan said...

Sweet Misty,

You are a very loving, Christlike person to have shared those feelings.

Our hearts are still very much aching for you and Jose, and your counsel is very wise - to hold on, have faith, and cherish every moment. This is how a mother should feel even when her children are much older than infants.

I was with your parents today, and I want to tell both you and Topher how blessed you are to have them in your lives. I know you already know this. I knew by looking at them today, as well as when you lost your sweet Helaman, that they would do anything including giving Grace their OWN heart, or Helaman their own breath, if they could only take this pain away from their children.

Their is no explaining the trials your family has faced, and continues to face. Only Our Heavenly Father, the Savior, and those who love us can offer comfort.

What a wonderful sister you are to Topher, to go so far out of your comfort zone and speak so freely about your own pain - for the sole purpose of benefitting your brother and his dear wife.

Love,
Auntie Amy

Carl & Karen said...

Thank you so much,Misty,for sharing your thoughts. It's hard to know what to say during this time, and yet you managed to do just that. We are praying, as is everyone.

Joan Koplin said...

I am a friend of Marti's...I just had a baby boy five months ago and so reading your story and looking at the pictures of your sweet Grace just makes my heart ache...really and truly. She will be in my prayers...All My Best,
Joan

Anonymous said...

Dearest Misty and Jose, I just read the add'l comments. I had to express to you how special, loved, and honored you are by God and all your family & friends!

Please do not think that precious Helaman does not see your beautiful face!!! He DOES!!! Although he was unable to spend time with you, he was a "spirit" and angel.....so I know he felt you, saw you, and loves you. He is looking down from Heaven to you and the whole family, but he is in God's loving arms through it all. He WILL know your face when he sees you join him Heaven one day; and his heart is filled with love for you and Jose!!! Just hold on to him in your heart and remember that he does know you!!!

Your grandpa and I have not wanted to brooch this subject with you, but we now want you to know that we have been holding you in our thoughts and prayers for a very long time, and are continuing to do so through these times. We love you and geatly respect your strength, honesty, unconditional love, and sacrifice!!

May God continue to richly bless you all!!!

Love,
Grandpa Chuck & Donna

kristen said...

Dearest Alysia, Topher, Misty and Jose.
None of us can imagine what all of you have been asked to go through. You guys have so much courage and faith. We have always looked up to you for that, and strive to become better people because of your examples. Find comfort in knowing that both of your precious babies have taught our family so much. I think twice when I feel like getting frustrated or angry with my own kids because I'm reminded that none of us are guaranteed the time we have together and we have to cherish each moment, no matter what that moment may be. I try to be a little kinder and speak a little softer because I think of the four of you and how I'm sure you would give up everything to be able to have the opportunnity to make one more memory and spend one more moment with your own child. Your trials have been so hard to bear, but I also know that our Heavenly Father gives us trials that He knows we can overcome, and we have to go through them to learn the lessons He has for us that we could not learn any other way. You will make it through this. No matter what the outcome is.
Thank you so much for sharing your feelings. We love this wonderful family so much. We wish we could be there. Know that we are always in our thoughts and prayers and will continue to be.
All our love,
Tyler, Kristen, Halle and Vinny

Kalani said...

Sweet Misty,

Thanks so much for your words of wisdom. I am not great with words but would like to say how much your words touched me. I have had a hard time with the loss of your baby since mine is so healthy. It does my heart good to read how you are doing. I am always praying for you and thinking of you. I would love to spend more time with you. You are very loved by me and my family.

To Toph and Buggy,

I know without a doubt that the Lord hears and answers prayers because if he didn't I wouldn't be here typing to you right now. I am praying with every fiber of my being that you will get to raise your baby here and now. Our kids are praying for your baby and they say she is sooo pretty. Kalea loves to touch her face on the screen. I love all three of you so much.
Kalani

atkinsonam said...

Toph and Buggy,
It was such a bitter/sweet experience at the hospital today.
Sweet, because we were able to see how strong and mature you both are.
Sweet, because we were able to put our hands on baby Grace and talk to her. She is indeed very beautiful and we could tell she has a fighting , powerful spirit.
Bitter, because of all the pain, sorrow and shock that she could not undergo the surgery.
Our prayers continue to be with the three of you.
Much Love,
Grandma and Grandpa Atkinson

Anonymous said...

Topher and Alysia
Just wanted to let you know that you are in our thoughts and prayers. Thanks for having your mom call and update us on what is going on. Your blog is AWESOME and we will keep checking back to stay caught up on what is going on. It is so fun to see little Grace. She really is so beautiful. We will pray, pray, pray for you. I know that you will be blessed. Please call if you need anything at all.
Love
Jesse and Cami Bell

Anonymous said...

Your daughter is so beautiful - she obviously takes after both of you! I am so sorry and so sad that you must endure this trial. My prayers are with you and I hope that the Lord will comfort you and open a path before you in which you will be able to keep little Grace on this earth for a long time. I love you both so much and want only the best for little Grace. If there is anything I can do please let me know.
Love,
Kayla

VAC Andersen Family said...

Topher and Buggy and
Misty and Jose'

I feel soooo honored and blessed to be your Mother...and so honored and blessed to have two such amazing Grandchildren--Helaman and Grace!!!!
I love you all so very much!
Mom

VAC Andersen Family said...
This comment has been removed by the author.
AJ Finnegan said...

Hi again,

Toph and Buggy, I don't want to intrude upon your decisions in any way, but I did find a article about a "hybrid" surgery performed on a little baby girl in Arizona just this past week, and she has responded well to the surgery. Here is the link:

http://www.eastvalleytribune.com/story/111682

Sara & Company said...

I am absolutely broken hearted....although I know that this is not the end, how hard it must be to not have her be able to go through the surgeries. I love you all so much and am truly so sorry. My sweet Will saw me cry after reading your message and he was so upset. I told him what was going on and he wanted to badly to help baby Grace to make her feel better. Together we kneeled down to say another prayer and throughout the rest of the night he kept looking at sweet Grace's picture and talking about praying for her to make her feel better. She is truly so sweet and beautiful.

And to both you and Misty and your sweet husbands, I know without a shadow of a doubt that your sweet babies knew you as spirits before they were even brought into this world and that their love for you and your willingness to give everything for them is and will forever be valued and treasured. They are your babies and always will be. We love you so much!

Lauren K said...

Ally I LOVE YOU so much! I'm so sorry I haven't let you know sooner, I just had the chance to read your blog.
Gracie is beautiful Ally and my heart is breaking for you and Topher. You guys are so strong and so amazing and I don't even know what to say except that your Heavenly Father loves you so much, he loves Gracie and he won't leave you or her comfortless.
I know you know that, I know you guys must be praying so hard to be able to get through this, I'll be praying for you too.
I love you Ally, hang in there.

AJ Finnegan said...
This comment has been removed by the author.
AJ Finnegan said...

I've been checking the blog all through the night . . . Grace has been a constant thought on my mind. I love her so very much. We all do :)

Anonymous said...

Bug & Toph-
All I can say is that many prayers are with you! I'm sorry to hear about the troubles with your little girl. If there's anyone I know of who can stand up to that kind of pressure, it's you - you're one tough cookie! And I know your hubby is as well.
Anyway ... know that prayers are being said on your behalf more than you could possibly know or imagine. You are loved!
-josher

Bill said...

I do pray for Grace, and have every day of her life.

To help give you hope, a friend and neighbor family, who share your faith, have a son, now a young adult, who received his first heart transplant as a young teen. He is now on his second transplant and living a life that is happy and very close to normal.

I DO pray that you will keep your faith and let it grow stronger. It will be a great help to you.

Oh, PLEASE don't worry about the one who gives Grace the gift of life with a heart. That child will dwell in heaven with the joy that she or he has given such a powerful gift to Grace! I am a donor and will rejoice in giving someone else my life, their hope, my love and their life!

Finally, please believe in miracles. They really, truely do happen. Grace is a miracle and I believe a miracle will happen for her.

May God be with you,

GICK said...

Buggy, Topher, and Baby Grace, my prayers are with you. I am amazed by your faith, and your compassion for others. I am sad that the options have changed so drastically, but continue to pray that you will be comforted, and that you will be able to make the decisions necessary. I am sorry that you must go through this difficult time, but your family will be strengthed by it. My prayers and hopes are with you. Love, Christi

Anonymous said...

Dear Tohper, Alysia and Grace,
From the entire Sweet Family we send you our thoughts and prayers. You and your family have been through so much this year. We wish you the strength, love and foresight you need to weather this storm.

Grace is a beautiful little girl! She is lucky to have such caring parents.

All our best.
The Sweets

Hollie said...

Topher& Buggy,

I want you to know that you guys are in our prayers. I work with a teacher at the seminary that his son had this exact same thing. They also thought they were going to be able to do the tree step surgery, but found out the exact thing you did.

Their baby had to have a transplant and now he is a healthy 14 year old boy.

He says if you have any quesions he would love to talk to you guys.

Get the number from Venice and call me, I will give you his number.

I wish you all the best.

Luv
Hollie

Peter and Julia said...

Topher and Buggy... This is Julia Burdych your cousin...Your baby is so beautiful and I just wanted to let you know that mine and Peter's prayers are with you.

Anonymous said...

Dear Toad and Buggy,
To begin with, is it natural
for you, Toad to marry a BUG? LOL
I love you both and Grace. What a wonderful name for her.
I am praying for you and asking our Father In Heaven to please bless you in your decisions that you must make and also to bless Grace. I ask that she not feel pain and that your pain will not be to hard to bear. Bless you.
I am also praying for your families. I know some of the pain they are feeling. I pray that God will bless them and give them the strengh they will need. Venice and Curtis, I love you, both and all your children.
Toad and Buggy and little Grace, Remember our Father In Heaven loves you. He will guild you with his love and your faith. I love you.
Please let me know if I can do any thing for you or your family.
I love you all. Aunt ReNae