That little face deserves a second chance... and even a third!
The cardiology appointment went much as we expected yesterday. Our local cardio agrees with the one that did the cath and says that the surgery could likely be fatal for Emma. She said she sees the things that were discussed with us and agrees with all the findings. She then stopped and LOOKED at Emma. Didn't examine, didn't feel, didn't do anything medical. She just LOOKED. And Emma was sitting up on my lap looking right back.
Then she started to talk. And it wasn't about her heart. She said that the little girl we brought in there a month ago was spacey. She didn't flinch at the doctor's touch or react much to anything. Then the cardio leaned forward and Emma followed her in with her eyes. They met.
Our cardio is of Indian (India-Indian) heritage and has been doing this for 30 years. She has a lot of experience and is good at what she does. She sees past the condition and sees the child. Next she looked at me and said that God saved this child. Emma's been through so much already and deserves a chance. Let's talk about what happens if she doesn't have the repair.
She went on to describe the process of dying that would transpire. I won't go into detail here but it wasn't a pleasant picture. No picture of death is pretty, but still...
Our cardiologist has known us for 2 years now. She's walked us through pre-op and post-op with Brianna. She encouraged our needs and wants, she advised us, and she treated Brianna well. Now she was looking at me and telling me the sweet things that many who have followed Emma's journey have said- she's a miracle, she's a blessing, let's get her fixed.
Although the risks related to the surgery are VERY high, there is no 'risk' in the alternative. It is definitely an ending, a painful and long one that will begin soon. If Emma is that small percent, if her strong will and God's hand pull her through, she can have a long, happy, healthy life.
We will meet with the surgeon during his next clinic in Orlando. He's the hand that held Brianna's heart. We'll hear his opinion before we go any further. I don't know what we will do after that. So much depends on each doctor's input and outlook on her prognosis. But we continue to stand on the HOPE that He gives us. Not only that the surgery will happen and be a success, but that God's grace will surround us and will protect Emma no matter what decision is ultimately made for her.
Pray for our girl, pray for Mike and I as we continue to search through everything and know the way God is leading for Emma.
Oh my, can you pass a tissue please? Look at her sweet face. She is truly an angel. Praying hard that there is something they can do and that she sails through. Keep us posted ... I'm on the edge of my seat here.
ReplyDeleteI have been following yoru family for some time now. I first "met" you on downsyn as my DD was diagnosed w. down syndrome in utero. She was born still on 3/2/05. I watch you in awe of the things you have done & continue to do for these children. I will pray for Emma & Micah. They are very blessed to have you & your family in their lives. The change since they came home until now is nothing short of amazing! The first pic Emma seemed so far away & the last, you can can see she is thriving. God has watched over her so far & I know he will continue to do so. Your family is on my mind everyday!
ReplyDeletePrayers from NJ
I need a tissue too. I've been through this. Had doctor's telling me my son was not going to live. He did. We pushed for surgery and had a wonderful surgeon and all is well with our son. I do not know the outcome of Emma's surgery. Only God does. But my heart breaks for you and what you are going through. It's a tough journey. But like you, I feel you have to give her a chance. So peace be with you in your coming decisions. It's a tough journey. follow what God puts in your heart. We'll be praying for you and your whole family.
ReplyDeleteJan
Thank you so much for sharing so honestly, Meredith. Regardless of your decision, it is the God who made the universe who will be holding Emma tightly close to Him. We will be praying for you, for confident faith and belief that Jesus will be right there in the midst of everything you are experiencing.
ReplyDeleteKaren S. RR
Emma is such a blessing. Thanks for being the best mama to her!
ReplyDeleteI have no wise things to say, but we will continue to pray and pray and pray; beyond that, we'll try to wait and trust.
ReplyDeleteOh Meredith....I have never had to face a heart condition with Reece. He was born healthy as a horse (outside of the DS). I can't even fathom going through it twice....you continue to amaze me with your peace and faith and strength....just inspirational. Love to all of you! ---Andrea Roberts, Reece's Rainbow Down Syndrome Adoption Ministry
ReplyDeleteContinuing to pray for you and your precious children.
ReplyDeleteGina
Wow Meredith. My heart is breaking for you and all of the difficult decisions you are faced with. . .but at the same time I am filled with such an overwhelmingly powerful feeling of hope. There is no doubt in my mind that the Lord has held her in His arms throughout the course of her life. I know that He continues to do so now. May the Lord bear you up during this difficult time. We are praying with all of our might for sweet Emma and your whole family.
ReplyDeleteWe are sending you many prayers for your sweet angel from South Florida.
ReplyDeleteHUGS!
We have no doubt that God will give you the ability and wisdom to make these difficult decisions. Emma is in wonderful hands...both yours and God's. We are very inspired by your decision to consider surgery for Emma.
ReplyDeleteWe will be praying for you as you walk this journey with Emma Hope.
Love,
The DeAngelis Family
I am praying for Emma.
ReplyDeleteMeredith,
ReplyDeleteWhen I first read the initial results of Emma's cath appointment, my first thought was that she has survived this long, she has grown and developed so very much in the month since you have had her home, my wish and prayer was that there could be a second opinion you could get that might give some hope. That prayer was answered. As I read what your doctor did, the connection she made to really see EMMA, not the DS, not the cardiac problems, just EMMA, and to declare SHE deserved the chance to live, I was praising God! I will continue to pray for you, for Micah in the hospital, for Brianna and Kristopher, for your husband, and most of all, for Emma and her doctors. I can't believe that God saved her for you to bring here, to abandon her now!
Mary Stolz RR mom
Praying with you.
ReplyDeleteYou and your precious Emma are in my prayers.
ReplyDeleteShe is a sweet angel who deserves a chance for a long life, my heart aches when I see her sweet face. Praying.
ReplyDeleteI am praying for all of you. I know the decisions you are facing are very difficult. It surely will be awesome to watch what God can do in this little girls life. I pray that you will find the right answer for all of you.
ReplyDeleteKayla
I think I LOVE that Doctor. :) I agree, Emma's a FIGHTER. She needs the chance to try to win this round. Im sure it is going to be a tough decision, and that SO much love and care will go into it. It will be right, no matter what you decide. I think she is a little miracle, already, shes got angels on her side.
ReplyDeleteYou must love that doctor!! I do! I agree, Emma deserves a chance. Look how hard she has fought for this long....Thanks for sharing your heart and Emma's progress.
ReplyDeleteI look at those pictures and I DO see hope...I see the miracles that has already happened for Emma. I am thrilled that the doctor took the time to really look at Emma and that someone is willing to give her a chance to fight. I am continuing to pray for Emma and your family every single day. I can not imagine what an incredibly difficult decision you are faced with. We are covering you in prayer and hanging on to the Hope that the Great Physician can and will heal Miss Emma's heart.
ReplyDeleteMeredith!! I don't have any words, other than we're praying!
ReplyDeletePrayers coming from us in Canada. Your little girl is a true miracle. God has a very special purpose for her.
ReplyDeleteAnjie (mom to Adam)
Meredith and family,
ReplyDeleteMy heart is heavy as I read your news about Emma. God is in control. There is a reason you are hers and she is yours. Keep the faith! Keep loving her and holding on to Him!
You all remain in our prayers.
Christina in Kiev