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| Chilling in our bouncy seat for the first time! :) |
Dear Family and Friends…….
It is amazing how much can change in just a few short hours. We are constantly updated on Emma’s care plan and needs. Today is no exception to that. Today, during surgical rounds, we found out that perhaps, Emma’s heart/lungs are not performing exactly how they should. Yesterday during the cath they found that the pressure in Emma’s ventricle when it relaxes is a 13. Today, Dr. Forbess informed us that ideally that pressure would be a 6 or 7. We also found out that Emma’s right lung did receive quite a bit of damage from the restricted atrial septum. While this damage should not be unconquerable, it is hard to overcome when your heart is not quite functioning as it should. While Emma’s heart is “fixed” like it should be, it is not relaxing as it should. In a baby without lung issues, this would not be a huge problem, but with a baby like Emma, it can be. So, what does this mean? Well, basically this means that it is in Emma’s best interest at this point to be put on the heart transplant list. This was somewhat shocking to us today. We have known from the day we met Dr. Forbess that this was a possibility for us, but we really wanted to Emma to do well with the three-surgery process. As we are reminded daily, what WE want is not always what happens. The doctors are working hard to understand what will be best for Emma. We are supposed to meet with the transplant team, cardiologists, and the cath lab doctors sometime this week to discuss this further. Emma is stable and that is a good thing. They will continue to monitor Emma and see what will be best for her, but at this point, all signs seem to point towards transplant. Please keep us in your prayers as we take this next step. Emma is such a fighter, but it is hard to know how to pray because getting Emma on a transplant list means that our potential gain is someone else’s loss. Please keep the prayers coming.
I have been reading your blog since before Emma was born and have been praying daily for you. I will be saying extra prayers for you. I know that you guys will make the right decision for her.
ReplyDeleteDearest Scott and Sarah, We will continue to keep your precious baby in our prayers. We so much appreciate the updates so we can know what to pray for. We love you guys. Kendall and Darla
ReplyDeleteSo sorry, Sarah, that you were alone to receive this news. I am glad that God was, as always, right there beside you. He loves Emma, too, and He will continue to lead and love the three of you! I love you three as only a Mom/Nana can love!
ReplyDeleteNana Jana
Sarah and Scott, I have been following all of your posts since Emma was born and have kept you and your precious child in my prayers. I will continue to do so and hope the best for your and your family. God bless you.
ReplyDeleteByron and Melissa (Burden) Church
What an emotional roller-coaster you are on. Prayers are being said to our Father in Heaven. You all have shown such strength through this journey. Just know that we all love you and are praying for everything to work out. I just imagine that everyone following this journey has had a change in their daily prayer life. Sweet little precious Emma, we are praying for you.
ReplyDeleteForgot to mention in the comment I just sent.........Just love the "sweet feet" in the picture.
ReplyDeleteSarah, Scott and Emma,
ReplyDeleteWe are praying hard for you all daily. Emma keep fighting and we know Who is in control. Praying for the doctors to make the right decisions. You are such a fighter and so strong. Sarah you are in our prayers during the times that you and Scott are apart. God continue to watch over you all and have His arms wrapped around Emma.
She is so cute in her bouncer seat!! What a big girl.
Love,
The Rogers Family
We haven't stopped praying for you all and will pray even harder! Love Brooke
ReplyDeleteYou are in our prayers!
ReplyDeleteThe Garvin's
We will continue praying for all of you. Your roller coaster ride is taking so many turns and my heart breaks for you with each new one.
ReplyDeleteSo sorry to hear this news! I can't imagine how difficult this has been for you but I truly admire you and Scott for constantly showing your faith in God. Emma is so cute!
ReplyDeleteYou are in our prayers!
Martha Thomason
Scott and Sarah-
ReplyDeleteYou have been in my prayers since before Emma was born. I will continue to pray for you. I wish I knew the words to say to be a comfort to you. I pray that God surrounds you with comfort and Emma with healing that only He can give.
We will be praying for your whole family... There is light at the end of the tunnel.
ReplyDeleteHazel mom to Elijah HLHS/heart transplant
We are continually keeping all of you in our prayers and our hearts. Dear friends of mine have a little girl who had a heart transplant a little over a year ago. She is doing great. (If you would like me to put you in contact with them, just send me an email: cdhmhoward@gmail.com) Emma is so blessed to have such wonderful parents and family/friends. It sounds like you have a wonderful medical team. Most of all, you have God, the great comforter and giver of strength in these times. May HE continue to watch over you and answer all of our prayers for baby Emma.
ReplyDeleteSarah and Scott,
ReplyDeleteWe are praying any for you, the doctors and precious Emma! the Terrell's
Praying for a Christmas Miracle for sweet Emma. My heart aches for you having to watch her go through this. Hoping a heart will come to her soon.
ReplyDeleteKim, MN
Sarah & Scott... hi there... you don't know me, but I have been reading your blog since before your precious little girl was born. You and baby Emma have been in my prayers since I first read about you and you will continue to be. I am nervous for you and scared for you and yet hopeful for you. Our great Father has a plan for all of us, and it is certainly difficult to follow that plan at times. He likes to throw us for a loop every now and then! He is blessing every moment of your days with Emma... I am sure for a long, long time to come. We will be praying extra hard tonight for your sweet girl.
ReplyDelete~Casey, James & Baby Eli
Dear Sarah, Scott and sweet beautiful Emma
ReplyDeleteI have been following your story here in Calgary, Canada, and Emma is in my prayers everyday. Ive also had a baby in the hospital for a long time (a 1 pound, 25 weeker preemie who dealt with a lot of problems and a big bowel surgery) and even though it wasn`t anything like Emma's, I do understand how painful it is for a parent to see their baby hurt.
So today, when this big news came your way, I decided to stop and send you a message. A message of love and hope, to let you know that you have a lot of friends walking with you through this difficult time. Friends from far away that stop by your blog everyday to read your words and see Emma's pictures. Friends who are praying non stop for this little angel to heal fast and to go home fast with mom and dad.You are not alone, Emma is in our prayers everyday.
With all our love
Rita and Baby Bella, from Canada
Praying for you and what the future holds...only God knows. He will direct you and keep you in His arms. Praying Gods peace surrounds you and overflows. Praying for guidance for the doctors, healing for Emma and mercy for mom and dad.
ReplyDeleteI am always excited to see a new post because it means an update on precious Emma, but when I check in I am always just a little apprehensive, knowing that the news could be not so good. Today was no different. I wish your news could be better, but God is still in control. He is on the throne and He is NEVER caught off guard by the doctors report. I continue to pray for sweet Emma and for her mom and dad. You guys are so strong. I pray that you and the doctors will have God's wisdom as you make decisions about the next step for Emma.
ReplyDeleteI lift your little family before the throne of grace and mercy every day and will continue to so.
Joy/Chandler, OK
Oh, I'm so sorry to read your news. Know that I am praying for the drs and staff, for you both, for your families and for sweet little Emma. I pray often for your marriage - that the Lord will use this time to draw you closer to each other and to him. May the Lord Jesus Christ surround you with his comfort as only he can.
ReplyDeleteu dont know me but iam praying for u and baby emma every day.i hope every thing works out for the best and she can go home soon.only god knows the rest. may god bless yall.
ReplyDeleteThe doctors will make the right decisions for Emma. They are wonderful and know exactly what to do for her. Her future will be bright. Love to each and every one of you. Our prayers continue.
ReplyDeleteI can't imagine how hard this is for you all. I know we serve an awesome God who is able to do great things. You are all constantly in my prayers. Pam O'Rorke
ReplyDeleteheard about Emma's blog through the Burk's blog. I pray for her daily. Sad to hear of the most recent change of plans....heart transpplant. Years ago when I was in high school my Dad received a heart transplant. I too remember the struggle that he faced...at the expense of someone else's life his would be given a second chance. As I got older I began to understand this struggle. As a result of his transplant I was given many more years to spend with my Dad. I will pray for a speedy match and a successful take. God bless your family and thanks for sharing your journey.
ReplyDeleteSarah
Scott and Sarah,
ReplyDeleteAfter reading these posts, even from people who don't even know you, it really amazes me. Everyone is rooting for you and your family. But most and best of all, God is on your side! I know at times it seems so tough and hard to handle, but I am praying for you all, especially precious Baby Emma. Nothing is more awesome than the power of prayer. :)
Continue to be in my prayers, and I know in so many others..
-Charlsey Foster (church)
The Chitwood's and Agee's are praying for you all unceasingly! We love you all so much! I love the feet in the pic too!!!
ReplyDeleteI know the idea of your gain being someone else's loss is hard to overcome. I just read a quote from a preacher to a mother who was waiting for her son as he received a transplant. I thought it made sense and thought I would share it with you.
ReplyDelete“You were not waiting for someone to die. You were waiting for someone who loves someone who dies to make a purely charitable choice at one of life’s hardest moments."
I hope that helps as you face the days ahead. I continue to pray for Emma and you many times each day. God is still in control. He has a perfect plan for your lives and He will walk with you and carry you through each mile of this journey.
Joy/Chandler, OK
It will all work out for miss Emma. The doctors will do what they know how to do best. The right decisions is part of their knowledge. Keep up the faith. We are all out here!!!
ReplyDeleteYou don't know me, but I pray for you all the time and your faith has made a huge difference in my life. Emma is a precious child of God and her story is one of great faith.
ReplyDeleteWhen thinking of the loss that must take place in order for your sweet Emma to receive a new heart, think of this...You will be giving that family a chance for their baby to live on in your Emma. It will be a tremendous gift to ALL involved. There will be pain and tears and sadness, but healing, hope and peace will flow from it. Praying that you find peace and feel all the love sent your way.
Jessica Scranton
I read on another heart momma's blog on how to pray for a transplant. She always said "I pray that in another parent's time of loss, they will open their hearts and be generous." You aren't ever praying that somebody else die, that is in God's hands. You, and everybody else praying with your family are praying for a family whose precious child's will has already been decided, to reach open and touch the lives of others in their time of darkness.
ReplyDeleteWow! Listening to a sermon reminding me: "My thoughts are not your thoughts...." How to figure out God's thoughts? Daniel is 3 years old and shouldn't have made it past a few months old, but his numerous heart/lung defects are working together to keep him alive. We have had him a year and a half now as a blessed part of our family and he is doing better, not worse! So, is God healing him? It this God's mercy in giving us time to find medical care for him? Mexican care is not adequate. His case is so complicated that we have not been able to find a U.S. doctor even willing to see him! God's thoughts? I don't know! We just do what we can do TODAY - enjoy each precious moment TODAY - follow God's leading TODAY - and trust that He will only lead to places that are for our eternal good (not always earthly good). Praying for you and wish I could give you a big hug!
ReplyDelete