Thank you to all of our friends around the world for the outpouring of love and prayers over these past few weeks for Ivy to be home for her Birthday!
She was!!
It was a magical day.. HOT, but magical and every bit of the perfect day I dreamt she would have on her miracle day!
It is so hard to believe our little tiny dynamo is 3!
I have lots of pictures to post from her special day and I will do so as soon as I can, but today, I wanted to fill you all in on our trip to Lucile Packard for Ivy's transplant consultation.
We met with every person one could imagine. Social workers, child life, nutritionists, doctors, nurses, and the transplant surgeon. She had test after test and was an absolute angel the entire time. We have been seeing a great change in her since starting some of these new heart failure drugs and can certainly tell that she feels so much better. We will continue increasing her dose and using oxygen 24/7 as a medicine for her hypertension.
Anyway, this morning the transplant team all met to discuss Ivy's history and the path they believe is best for our daughter. And after much consideration they have decided to decline listing Ivy for a transplant. I know this sounds like grim news but Dr Kaufman assured me that this does not mean she will never be listed, it just means that they feel there is still hope for Ivy's heart to get a little better with time. They feel that with some bypass arteries growing around her coronary and some hopefully positive response to the oxygen, and new medications, Ivy's heart may still be able to give her a good quality of life. The right side of her heart has terrible function, but they believe it could just need more time. It has only been 4 months since her 5th open heart. They want to give it a full shot at recovering before they say it is absolutely incapable of sustaining life. I appreciate their optimism. I call it hope. I know that every part of Ivy's life and miracle holds true to Matthew 19:26
But Jesus looked at them and said, "with man this is impossible, but with God, all things are possible."
And so the plan is to wait and see. She will continue with her new meds and oxygen. She will have a heart Cath at Lucile Packard on August 4th. And if she stays stable up until then, and shows a trend for the better in her heart Cath, then we will stay off the transplant list and with our faith of a mustard seed, wait with anticipation for God to continue sketching out the plan for Ivy joy. He no doubt loves this little girl bigger than anyone could ever comprehend. And while this story may not seem like much of a fairytale to most, we give thanks every day that we have the 2 sweetest little princesses in our lives because He trusted us!
I don't know about you, but I think this is going to be the best mothers day weekend ever!!!
Ivy's Birthday Carriage!
Worn out from the party and being comforted by her big sister.
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10 comments:
What a special relationship those two little princesses have!
The prayers for all of you continue...and I do pray that they are headed in the right direction with Ivy's treatment and not only is this a good next step, but that the 'reprieve' of sorts will be healing for your family, too.
Prayers and love from CA!
Thank you for the update. I see there is much cause for hope, and wish you all a joyous summer.
Yes. This really is good news. I am praying Ivy will continue to heal.
Continued prayers for Ivy and all if you ! Thanks for the update and I HOPE for only good things for your little girl.
I'm a lurker, but today have to say that I am in tears over your positive news. I'm thinking your little girlie is America's sweetheart--at least those that know of her!! I'm also thinking her sister is an extra special little girlie!
May I add that I hope you are back to bloggng again. I just love the pictures you share of those little girls. They always warm my heart, for I too, adopted a little Aisian girl from Korea many many years ago. (She is 53 now!) She was tiny and beautiful, as your girls are and I so enjoyed dressing her!!
Thank you for sharing this special news. Looking forward to seeing the birthday pictures!
I'm so happy y'all were able to celebrate her birthday (in style it seems- love the carriage!) together. And it sounds like hope is a great plan!
Are you staying in the hospital or are you able to do this outpatient?
Can't wait to see the birthday pics.
KK
www.preppypinkcrocodile.com
Happy Mother's day Mary. God gave you amazing hope. Love you and love you Ivy....Happy Birthday sweet girl.
Happy Mothers Day, and Happy birthday Ivy! (And their Jiwon Kim looks great, bt
Oh how lovely to hear from you guys ! What a beautiful family! I read so many blogs and this one definitely stays in my mind most! I just am really pulling for your family! I know God must have a great plans for Ivy!
I am so glad they have faith that her heart can get stronger and stronger. Love the photo of Lexi and Ivy Joy - big sister is so protective - wonderful. It was such an amazing party!
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